COMMUNITY SUPPORT PAGE

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The difference between a helping hand and an outstretched palm is a twist of the wrist.

~Laurence Leamer, King of the Night

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So it all started when I wrote THIS. Which, if you’re interested, was part one of THIS.

And you all spoke up. And asked how you could help. And while I hadn’t realized that the post had read as a cry for help, once I read your comments, I went back and re-read my post and I then I couldn’t really deny that I obviously needed help, which I wrote about HERE.

And then, because you are all sorts of brilliant, you came up with the idea of creating a place to help one another — A place where those with questions could ask them and those with wisdom could share it.

And then, because I am just smart enough to recognize a really good idea, I said, “Um, that’s a really good idea.”

So here’s how this works, my friends — If you have a question, you leave it for other readers in the comments. If you have ideas or suggestions that can help, you leave them in a comment replying directly to the person asking the question.

I will not be officially moderating the comments on this page, so …

PLEASE NOTE THAT THE COMMENTS ON THIS PAGE ARE NOT NECESSARILY REFLECTIVE OF MY VIEWS, AND ARE NEVER, EVER TO BE TAKEN AS GOSPEL. INSTEAD, THE THOUGHTS THAT YOU FIND HERE ARE INTENDED TO PROVIDE A STARTING POINT.
ALL OF US ARE DIFFERENT. ALL PEOPLE WITH AUTISM ARE DIFFERENT. NO TWO  PEOPLE WILL RESPOND THE SAME WAY TO THE SAME THERAPY, TREATMENT, MEDICATION, ENVIRONMENT, INTERVENTION OR STRATEGY.
I URGE YOU TO THOROUGHLY RESEARCH ANYTHING YOU READ ABOUT HERE AND TO CONSULT WITH  PROFESSIONALS TO DETERMINE APPROPRIATENESS BEFORE BEGINNING ANYTHING NEW.

Now, just because I won’t necessarily be a part of the conversation here, my absence does NOT mean that Diary’s Comment Policy will not be in effect on this page. It will be, just as it is everywhere else on the blog. It reads as follows.

My greatest hope is that the discourse on this blog and its accompanying Facebook page can serve as examples of environments in which compassion, understanding and mutual respect are paramount.

That said, I publish nearly all comments, but there are rare exceptions.

I have long been frustrated and deeply saddened by the chasms in the autism community. I will not allow diary’s comment section to become a megaphone for the anger that serves to keep us divided.

I will not abide personal attacks, either on me or my readers. While I actively welcome constructive disagreement and respectful discourse, this is not a forum for unproductive anger, particularly that which is directed at one another.

While I am happy to respect anonymity, please note that I also do not publish comments without a name (or consistent pseudonym) and a valid e-mail address.

From the bottom of my heart, I thank you – not just for sharing in our family’s journey, but for joining the conversation. And in so doing, respecting each other, supporting one another, and finding ways to bridge the space between us.

BOTTOM LINE, THE COMMUNITY SUPPORT PAGE IS A JUDGEMENT-FREE ZONE. IF YOU DISAGREE, PLEASE DO SO CIVILLY AND REMEMBER THAT WE ALL HAVE DIFFERENT PATHS AND DIFFERENT PERSPECTIVES. FEEL FREE TO OFFER YOURS WITH RESPECT AND COURTESY FOR OTHERS.

Lastly, I reserve the right to remove any and all comments that do not comply with the policy above or for any other reason at any time.

Thank you so much for supporting each another. It’s everything.

Ed Note: It seems that WordPress limits the number of replies to a comment. If you find yourself unable to reply directly to someone’s question, please reply instead to the last person who replied to the same question. That way your response will still show up in that thread. Thank you!

700 thoughts on “COMMUNITY SUPPORT PAGE

    • Yes. I have done EMDR. I had a wonderful therapist who specializes in EMDR. It was probably the single best thing I’ve done for myself. If done correctly it will transform the trauma from something that pulls you down into the hell of reliving it whenever it is remembered, to just being a story that you know is part of your past, but will not necessarily pull you down into the horrors of it every time you think about it. It’s almost like having a scrim unfurled between you and the traumatic experience.

  1. OK so this is supposed to be where we can help each other, right? I’ll just put it out there then. I have a son on the severe end of the spectrum who is a sensory seeker. I need to put a behavioral plan in place for home but am at a loss as to where to start. I have tried professional after professional and they have turned us away, saying he is “too violent” for their programs. Funny, he isn’t too violent to live at home… and the violence isn’t intentional on his part, he just needs to find a better way to express things. At this point hospitalization has been mentioned. We are on waiting lists we have been on for months for specialists, but those lists don’t help me work on things TODAY and it’s rough. Does anyone know of a good how-to website or book for behavioral plans? I am on my own here, floundering, trying to do the right thing by my child… any information would be helpful. Thanks.

    • Kim, I’m so sorry you’re having such a hard time finding support for your son locally. :-( If you can answer a couple questions we might be able to help find some good resources.

      How old is your son? What types of behaviors are you you most concerned about? Is he ablet o speak? If he is not, does he have any kind of communication system in place (sign language, picture exchange, pointing, speech generating device)? So many children have SIBs (self injurious behaviors) either from pain or frustration at not being understood (or a combination of those things). A behavior plan will only go so far to help if your son doesn’t have a way of making himself understood.

      Is he in school? Is he in an early intervention program (if he’s 3 or younger)?

      All that being said, a basic behavior plan involves identifying the things which cause your child to escalate his behaviors and then “trouble-shooting” in advance. For example, if he has trouble transitioning from one activity to another, you could try giving him a 2-minute (or whatever time works) warning and tell him that when the time is up, you will move on to (name of activity). Also, picture schedules or lists (if he can read) really help lots of kids feel some control by knowing what to expect next.

      If you google “create a behavior plan” you can find lots of resources which may be helpful. Ter Mauro wrote an article about BH’s here: http://specialchildren.about.com/od/specialeducation/qt/behaviorplan.htm

      I hope any of this helps. Best wishes!

      If you want to email instead of answering here, you can reach me at niksmother (at) gmail (dot) com.

      • Wow, sorting through all of this… this is great, by the way, a place to give and take from! Ok so to answer your questions, my son is 6 years old and he is in an Autism program at school. The school hasn’t helped me any either… not sure if I mentioned that. They would like me to do things “exactly like we do it at school”, HOWEVER when I visit I see things like them allowing him to crawl on the floor and bark or things going on with other kids I don’t think is supposed to be going on, things they don’t tell me about. His school behavioral plan has him doing puzzles or hooking up connecting toys, which is all they tell me, however that isn’t the truth either. One time when I went they brought him up from the ‘quiet room’ where they said he was ‘readjusting’… no further explanation. He is in Kindergarten… well he was… last day was today… and has been in Autism programming for 3 years now.
        As far as communication, we do some PECs, he isn’t very verbal. But the school requested I do nothing further because they said if I do it would go against what they have working at school. I was going to get him an ipad and they said if I do he will have no incentives to TALK for what he wants and so he might never be fully verbal. I also feel I need an Advocate, but the only one I have found was through our area education agency and she gave me some phone numbers and basically said have a great day. I have called every help organization in my area, and what it comes to is it’s all me. I made an appt. in Iowa City at behavioral health but that won’t be until November, they are really backed up, and it’s a two hour drive every trip up there, so I would like to make that trip as little as possible. A normal car trip involves my being punched in the back of the head, kicked in the back (he broke my seat), screaming… you name it he does it, no matter what toys or games I supply him with.

    • Hi Kim-
      I was reading what your school said about PECS possibly removing your son’s incentive to talk. There is a lot of evidence to the contrary. My daughter is moderately deaf, autistic, nonverbal. We are using sign language and PECS with her. If and when she is ready to speak, she will,but until then, at least she has another avenue of communicating with us. I would question your son’s team more closely on why they feel PECS would interfere with speech, when there is a lot of evidence to show that it (like ASL) helps develop language in children, and in that way may actually encourage speech. Also, there is a book called The Out of Sync Child that may also help with many of the sensory issues. My suggestion would be to find a speech language pathologist who specializes in PECS. This doesn’t have to be an autism specialist. They could at least get you started. Perhaps some of the frustration would be eliminated if he had another way of communicating. I am so sorry that you are going through all of this. Feel free to email me if you need anything.

      • I’m trying to reply to Kim…. but it won’t let me! Kim… my son will be 6 this fall. We also just finally got an appt down at U of I Child Health Specialty clinics… took nearly a year. We go in late June. I’m running into some of the very same AEA/school issues you have mentioned and we really have to fight for anything and everything and in the end wind up doing it all ourselves. I feel for you and am right there with you. I will say this… PECS and the iPad were miracles for my son. He was never non-verbal, but now he is so much better able to express himself than he was before and he is using his words a lot more and just screaming at the top of his lungs a lot less. The iPad also is a savior for us on car trips… I guess I have no real advice other than do not totally discount PECS or iPad… and know you are absolutely NOT alone in this struggle.

      • oh, and I wanted to add, my son is also a sensory seeker with aggressive tendencies especially at school. OT was another godsend for us. Difficult, time consuming, and absolutely necessary. We also saw some progress with a system called Integrated Listening Systems, which they did at our OT appts when all of the other therapeutic listening things failed. These headphones vibrate and he really liked that input I think. The book the other poster mentioned The Out of Sync Child was really good and helpful too. There was something else but I can’t think of it right now…. will try to remember it. Also, I don’t know which direction you are from Iowa City but there are some awesome autism clinic resources in Dubuque at Mercy hospital there (we can’t get over there, but everyone I’ve met who went there had only good things to say). Of course U of I is supposed to be top notch as well (guess we’ll find out in June…)

    • Anytime a “professional” tells you that their way is the only way and that you should not try other approaches, this is a BIG, GIANT, RED FLAG. Ideally, you could confront them and remind them that this is your child, and they are only there to help you. YOU are in charge. It is an unfortunate reality that there are certain “professionals” who use their status to bully people. In this case, they use your concern and confusion over your child to try and take control of things that should not be controlled by them.

      The appropriate attitude for a provider in this situation is one of collaborative effort. Good providers are overjoyed to find parents who are concerned and active in the care of their kids, because there are parents who are uninvolved the neglectful that they see all the time.

      Now, I could be reading the situation wrong, but it sounds to me like they are using scare tactics to keep you from using other methods and other tools other than the ones they provide. This is completely inappropriate. It sounds like you really do need an advocate to help you. I wish I lived near. I would be happy to help, but this is a really hard one. The only thing I can offer at a distance is my support and a listening ear.

      Feel free to contact me at scintor@aol.com or I can give you my phone number if you would rather talk over the phone. You were dealing with a very difficult situation and it never helps when you find you’re being bullied.

      John Mark McDonald

    • I know that I’m really past the activity on this thread, but, I am wondering how things are for you and your son. What changes have you all made and which have ‘worked’?

      I am asking because the reply thread includes some very helpful information, and there is more, as you know!

      Please give an update, if you are still following this site! My son has violent outbursts at home, school, wherever, and I have come across some very helpful techniques in the last year, but would like to also know what has worked for you and others!

      For us, utilizing Dr. Ross Greene’s model found in his book “The Explosive Child” has been extremely helpful. This model is well-described in his website: http://www.livesinthebalance.org/ where there are links to a weekly call-in online radio show for both parents and educators.

      I hope all is well and look forward to a reply!

      Thank you.

  2. Thank you Jess. I woke up this morning thinking to myself…I could really use that community support page right about now…and here it was.
    I NEED HELP…or at the very least some support Please…
    My daughter is 4 and a half. She was doing amazing and making tons of progress up until a couple of months ago. She started making requests, was potty trained, communicating in her way, happy, and regulated.
    Now…NOW…she is so bad. She is screaming at every little thing. ALL day. Screaming, crying. The behavior is off the charts. She’s also having more accidents, when she was doing really well. She is screaming in private therapy. We are loosing it over here.
    We’ve racked our brains trying to figure out what’s wrong…allergies? 5 YO molars coming in? Both? Is something going on at school? Is she eating something she shouldn’t be? (she’s gf/cf)
    ARe we doing enough? Are we doing too much?
    I’m setting her up with therapeutic horse back riding. She went last year and it really helping. I’m hoping and praying my insurance company will cover some ABA therapy….working on that now.
    I just can’t take much more of this. My heart is breaking. I can’t sleep. My marriage is stressed (though we talk a lot) and I’m crying pretty much every day.
    What can we do?? What am i missing? Has anyone else had something like this happen? ANY idea at all what might be causing it, or what I can do to help?
    It’s KILLING me to see her like this…and I’m desperate for some answers. Thank you all.Barb

    • Hi Barb. I’m sorry things are so hard right now. I totally get this. Sometimes it seems like these behavior changes come out of nowhere for my son too and I play detective to figure it out. Then three days later, it comes clear (sick, school anxiety, etc.) Best advice I ever got was to try to track everything, from hours slept to toileting changes to food. And ask if there’s something new happening at school. I know my 6 yr old has been anxiety-riddled over the end of the years school play and the constant talk of first grade.
      If Jess is okay with this, I’m also linking to a post written by a friend of mine called “It isn’t Regression”. http://www.spdbloggernetwork.com/2012/04/26/it-isnt-regression-2/ This time of year is really hard for our kids sometimes, and we may have to give them a little more space to breathe to help them through.
      Good luck. You sound like an awesome mom and your daughter is lucky to have you.

      • That blog was AWESOME!! And I think that it’s helped me. And it’s right…this is a tough time of year for her. This was also her first full year of school. There could be so much going on she is just too stressed. Thank you so much for that.

    • My 6 yr old daughter (who is not autistic) has gone through SO many phases of emotional stresses in her life, that I often wonder if there IS more to it all (we’re in therapy with her for some issues currently). My point being, that even without the challenge of autism, girls can be tough! Have you considered problems with her ears at all? I know it sounds crazy, but we have had so many issues with my 2 yr old’s (he is PDD NOS) ears over his life so far, and it has caused him a lot of pain (we’re off to the ENT today to have his tubes checked). When he was an infant, he would scream for no reason and we had no idea why…at 6 mos old, we found out he had a dandelion seed stuck in his ear…had floated in there in the fall! He had to go through surgery to have it removed, it was so far lodged into his ear canal/on his ear drum. While this may not be helpful, it’s something you might want to consider…I know ear pain has caused him some pretty extreme discomfort and made him inconsolable at times. Hang in there and I hope you find some solutions!

      • It could be something like that going on. I’m planning to take her to the doctor, dentist…to get her checked. It could just be end of the year stress…it could be something more. Thank you so much for your support, it means a lot

    • Hi Barb! My son had a few potty accidents after a year of being potty trained and we discovered it was from anxiety and that he was being picked on by kids in preschool. They are all the same age but he’s little for his age and wasn’t speaking up for himself if they took a toy or something. After we brought up the problem the teachers and bus driver started watching for it and moved the kid to another area that was being mean to him. Try asking the teacher or anybody who would know because maybe that is happening but it’s not being caught.

    • As an Adult with Autism who is raising two autistic kids, I can sympathize. Since I am not there, I can only guess, but it really sounds like sensory issues. From my own experience, autistics tend to need a small amount of sensory stimulation of the right type and shielding from stimulation of the wrong type or overwhelming amounts of any type. Unfortunately, what kind of sensory stimulation is bad and what is good is different for each autistic person.
      Because she is still little, the only way to figure this out is by observation. If she screams every time it gets quiet, it may be that she needs sound stimulation. Some low background music like classical or ambient could make a great deal of difference. On the other hand, if she screams every time there is a noise, this could mean she’s being overwhelmed by sound. A pair of headphones that completely cover the ears could be an amazing help to her.
      If she likes to hide in dark places, or seems reluctant to go out into the sunlight, she may have light sensitivity. A pair of sunglasses, even indoors, can be a real help. If she is drawn to the light and things that are brightly colored, she made need more visual stimulation. Shimmering and iridescent things could be very comforting to her.
      She’s constantly rubbing herself she may need more tactile stimulation. A stim brush such as occupational therapist use could be very helpful. On the other hand, it is not uncommon to be overwhelmed by things like clothing touching her skin. Warning signs here are things like constantly taking off her clothes or rejecting rough blankets or towels. In this case removing clothing tags and making sure the inside lining of the clothing is smooth and not scratchy can be very important. Another thing to watch out for here is sensitive skin. If she is constantly scratching at her skin until it’s red and raw, she may be sensitive to things like the chemicals in fabric softeners or the scents in laundry soaps.
      Smell can also be the big sensory trigger. If she is constantly burying her nose and things she may be smelling them. In this case scented candles or Glade plugs might be useful. Conversely, she may be overwhelmed by smell. If she avoids the kitchen or rooms that have just been cleaned or any other strong smells, scents may be overwhelming to her. In this case Frabreeze becomes your friend.
      In any case, sensory triggers tend to be a big deal for autistics of any age. Being overwhelmed by their senses makes all the other tasks in their life much more difficult. This can lead to her being unable to deal with things that she previously mastered. I really hope that this can be of use to you or others.

      John Mark McDonald

    • totally get what your saying. I am so sorry your dealing with this. It is hard when we can’t seem to figure it out. We have been through times like this with Sammy too. What we found it was for us was often a developmental leap about to happen. It gets sooo bad before he gains a new skill I just want to run away…or drink heavily
      we do find that trying to isolate the skill and working on it can help. being really careful about sleep and water/hydration because those are huge triggers for my guy. Anything with Dyes, artificial flavor, or BHT make him CRAZY! I hope it’s better for you by now
      Cheers;
      Annemarie

  3. What a wonderful idea!!! I’ve been trying to link up to some sort of support group (mostly under NEARC) but have had little luck, and not very much time to meet up face-to-face. While my concerns are not as trying ast those mentioned above…I do need help…
    One thing–any ideas how to stop a child from chewing on their shirt? My 2-yr old son is ENDLESSLY CHEWING the collar of all his shirts (or the wrist area)…looking for ideas on how to stop this as we’re running out of shirts and he’s walking around with wet/smelly shirts all day. I’ve tried the vibrating teethers, but he’s chewed through them and they’re not ideal to carry around the house.

    • Valmae, have you tried behavioural type rewarding ie in the most simplistic terms – say, yay, you didn’t chew for 1 minute, have 5 minutes on a rewarding activity, then once the 1 minute is happening successfully, update it to 2 minutes – yay, you haven’t chewed for 2 minutes, have 5 minutes on the reward until you can get the time up – I know that sounds simplistic but you might have to start at a really short time interval and/big reward and gradually increase the demand/reduce the reward or maintain the reaward – you don’t need to keep increasing the reward if it is done slowly.

      • Am def going to give this a try, as I feel he finally understands. He has his favorite toys now, so I can certainly use those as “reward”. thanks!

    • At 2 yrs old, many children are still exploring their world through ALL of their senses. If the behavior is constant, you could try either a behavioral approach (not always successful with kids that young as they don’t have as much control over some impulses) or you could find something more suitable such as a chewy tube or “chewelry.” Both of them can be found online at various sites for various costs. Here are some links: http://www.mayer-johnson.com/nsearch/?keywords=chewelry&s_kwcid=TC|16135|chewelry||S|p|11413471264&gclid=CJ7utpjwk7ACFUdN4AodXkbMpg

      and http://chewytubes.com/ The chewy tubes come in different thicknesses and textures, even letter shapes.

      Also, I find that my son is less likely to chew when he is fully engaged in another activity. The chewing usually ramps up more with boredom, anxiety, or (when he was younger) teething. (Is your son getting his 2 yr molars?) Hope this helps!

      • Thanks so much for the links, I will have to check it out. I had made one myself, by braiding together teeshirt fabric, but that got pretty gross, pretty fast! I do feel he chews ALL the time, but it is certainly less when he is engrossed in an activity. Going to check out those links now, thanks!

    • I also turned up the heat in the house and took his shirt off him. He had to “deal” without the use of chewing on his shirt. He gets LOTS of therapy and I tried to up his stimulation on other things b/c his shirt chewing was mostly from computer stimulation. After a while it phased out and now we only see this on a hard day. I REALLY liked Wattle’s advice as well. A lot of autistic kids work well on the “first – then” way of thinking. First you don’t chew on your shirt for “x” minutes THEN you get a treat . Make sure it is a treat he really wants and GOOD LUCK :) ps a good behaviorist has been a serious plus in our lives.

      • Thanks, this is on my list for the summer…no shirt…no pants :-) Hoping to start potty training…or at least awareness of the potty (he seems to have NONE) given that he will be 3 at the end of August. He is starting pre-k this fall to continue getting services that he outgrows through EI & Building Bocks, so I feel I need to nip this chewing in the bud…or at least provide some alternative. Thank you!

    • We also went through this phase when my son was 4. His OT bought him some really cool foam-like teethers (but stronger than foam, so he could really bite down hard on them but they didn’t fall apart in his mouth), and they were easy to carry around with him. The key was that we would give him the teether RIGHT when we saw him start to chew on his shirt, so eventually he started just going for the teether instead of the shirt. And, one day, out of nowhere when he had been obsessed with it the day before, he just stopped doing it — so maybe that will be your solution.

      • Thank you for the input…very good idea. I just have to have the patience/time to intervene when it happens. We did try the vibrating teethers and it worked for a bit…but he really did chew those up fast. We’ll give it another try!

    • As a 42-year-old autistic adult, I remember doing that very thing as a child. It sounds like a form of sensory stimulation to me. It might even be useful to try and use behavior rather than curb it. Beef jerky, chewing gum or other chewy foods can be used as rewards to help shape his behavior. I remember being given a rawhide dog chew toy as a child because I was doing this very thing. I took it as a challenge and chewed the thing completely to pieces within a day or two.

      John Mark McDonald

  4. This is awesome! Our 3 year old son was diagnosed with high functioning autism. The whole process of getting the appropriate services him is really quite daunting! However, that’s not my question. We are having a really really hard time potty training him. We have tried the 3 day method twice. The second time we thought he had it but when he went to daycare, he did not have the same success as at home and he basically reverted back to having accidents all day. Plus, he would yell “NO! NO! NO!” when his teacher told him or asked him to go to the potty. They definitely did not force the issue. Do you have any recommendations for books or websites or advice? Thanks! I am SO glad I found this place!!!

    • Hi! We used a method with my daughter that is for children with developmental delays. It’s called Foxx/Asner. It WORKED. It’s not easy, and you have to be consistent…in school and at home. It took my daughter 2 weeks and she had the idea. If you want the info email me at mommylovescymbie@gmail.com, and let me know your from the page. I can email you over a copy of what we did with her…the hand out I got from school. If you’re interested. Good luck

    • Hi Anheerah, my high functioning boy took quite a while. My “typical” boy wasn’t really using the toilet regularly until 3.5, either–boys can just sometimes take quite a while. When we were having good success, and then not so much, my wonderful pediatrician suggested just backing off completely for a few months and starting again slowly. We did that when he was 4 and it all went smoothly–by that point he was really physically ready as well as emotionally ready. Hope this helps! Karin

      • I agree. My boy was about 3.5 when it became his decision. Until then, if we tried, he just didn’t care. But once it was his decision, it happened pretty quickly. However, not at night. It was really until he was almost 9 (yes, 9) until nighttime became dry. And that was when he decided to try an alarm that would wake him up. His typical sister went late, too, as far as the nighttime…so probably a family thing, as well!!

  5. Love this idea Jess! Thanks so much for starting this. I just have a gripe with my son’s school I wanted to share in case any of you have ideas for me.

    Yesterday my son’s (HFA/adhd/spd/anxiety, age 8, 2nd grade)speech session was changed from am to pm because of a meeting conflict. He was told about it in the morning but refused to go at 1:30 when it was time. His para brought him to the office where he was put into the conference room to calm down. He crawled under the table to hide and picked up a paper clip from the floor. The determination was made that the paper clip was unsafe so they wrestled it away from him and did not give him time/space to chill out. He was removed from under the table and staring out the window when he wet his pants. He was told he needed to clean up his mess. He stripped and threw a wet sock at an adult which they took as an act of aggression and restrained him. After the restraint he got dressed and punched his restrainer in the stomach which resulted in a second restraint. Is it just me or could this entire scene have been avoided by letting him stay under the table until he was ready to talk?

    • Ugh . That sounds awful! I’m so sorry your son had to go through that. Yes, it does seem like the whole situation could have been avoided if they’d left him alone. The making him clean up his mess part bothers me. He likely wouldn’t have had an accident if he hadn’t been in that situation in the first place. It’s not his fault that he couldn’t go to the bathroom because he was locked in a conference room! They should have known that changing his schedule with such short notice would throw him off. It seems that they could have been more prepared than that.

    • Yes, this sounds like he was overwhelmed by the change in his schedule. The reaction by the teachers and paras simply escalated the situation until he had a meltdown. His para especially needs to learn to see these kinds of indications and take the initiative to cancel such appointments.it sounds like neither of these people were autism experts and they got confused and overwhelmed by him becoming confused and overwhelmed.
      I would ask for a meeting with them, and try to explain what happened without making accusations. Let them know we would’ve been much better to cancel the appointment or simply let him isolate until he calmed down. They need to know that he was not being bad, he was simply being overwhelmed by his disability at that time. Helping them learn will help your son in the future. If they don’t learn this kind of thing could be repeated and possibly get worse.

      John Mark McDonald

    • I agree. I’d say their responses really escalated the situation. Also, the school needs to make sure that the calm-down area is kept clean and safe so your child can have time to regroup.

    • Sounds like you have my daughter in male form (she hit her principal after stating “I know tai kwon do and I’m not afraid to use it”). The “professionals” absolutely escalated the situation. They could have let him have the paperclip and had someone watch over him instead.

      You may want to talk the people at school after you have thought about ways that you have handled similar situations. As also, be as calm as possible and use a non-accusatory tone (even though I found that very hard in our situation I mentioned above).

  6. Thank you SO much Jess. My 3 year old with high functioning autism holds her urine for as long as she can…hours or even all day. She doesn’t want to pee. She will get extremely agitated until she finally goes and then she feels better. She fights me to sit on a training potty and is terrified of a regular toilet. I’m not pushing her to potty-train. I would love it if she just went in her diaper, but she won’t. She does her little dance, holds herself, even digs into her “girly parts” and gets really upset. I began to wonder if urinating actually hurts her, so I took her to the pediatrician. A test for a UTI came back normal. On several occasions when she is holding it and getting agitated, I put her in the bathtub and turn on the water and she will go in the tub. In the last couple of days I’ve tried sitting her on the training potty and putting her feet in little bowls of warm water (old slumber party trick). She will go immediately! I’m glad to have found something to help her, but where do I go from here? I still think it hurts her to go. I think I should have her seen by a doctor, but her pediatrician doesn’t seem to know what is going on. What type of doctor should we see? Urologist? We are beginning ABA in August and I’m hoping they can help, but I don’t think we can do this for 2 more months. I would love some advice!

    • Amy, my daughter (now 8) did everything you describe when she was younger. I was convinced that it was painful for her to pee but it turned out to be just one of her behaviors. We did potty training boot camp over the course of 5 days with our ABA provider and a group of special education graduate students who needed some therapy experience. It basically involved taking her to the bathroom every 10-15 minutes, lots of positive reinforcement and then extending the times. I had my husband take our son away to visit friends for a few days and I took time off work. The grad students came in shifts so I would not lose my mind and would stick to the program. It was exhausting but it worked for us. Once she was potty trained the behaviors mostly went away although we still need to reimd her from time to time to use the bathroom.

      • It sounds like this is a sensory issue, rather than a pain one. Giving her something she likes to do while sitting on the training potty might be helpful. a mild pleasant sensory stimulation can often help with other sensory issues.

        John Mark McDonald

      • Thank you so much. It is so nice to know that someone else has gone through the same thing. Everyone else I’ve talked to has been baffled about this one. I appreciate the advice and support!

    • My daughter struggled with potty training as well. She wore pull ups to bed until she was 7. I still struggle with getting her to go on a regular basis. For her, she doesn’t want to stop what she’s doing, to go. I have explained to her that tv and movies can be paused, as well as games, and that her teachers won’t mind if she gets up to go to the bathroom. But she waits, and then when the urge hits, it hits hard. She will drop to the floor, with her legs in the ‘W’ and she’ll wiggle until she ‘gets a hold of it.’ I do my best to remind her to go, but have learned that I have to be very specific with what I tell her. She would say that she didn’t need to go anymore so I would tell her just to go sit on the potty and see…..well, she sat on it, clothes and all. Now I am careful to explain that her pants should be pulled down before she tries to ‘sit on the potty’. lol

    • Hi Amy, Our 4-year old son was also trained using the method Dawn described. He is in an Autistic program at school, so his teacher and Para started him there first. They asked us to send in super-high reinforcers that he would do ANYTHING for – in our case, mini-m&ms. They started taking him every 10-15 minutes, and told us not to worry about following up at home just yet. Then after he was up to going every 30 minutes with a good success rate, we took over at home as well. There were lots of accidents in the beginning, he got bored of the m&ms (swedish fish was next), but eventually he did get the idea of it. Pooping was a different story. That took a full six weeks longer – but just when I thought I couldn’t clean up one more poopy mess – he got the hang of it. Believe me when I tell you that one year ago I looked at him and thought, “this kiddo will never get the hang of the whole potty thing” – and in just a few months – TAH-DAH! I have a book at home that describes the method step by step. I can scan the pages and email them to you if you’d like. Let me know via email at nickysmomma@yahoo.com

    • Hi Amy-
      I am having problems training my five year old daughter. One thing that was helping for a while was this thing called the “potty watch.” You can google it. It’s about $10. It is basically a timer that goes off every 30, 60, or 90 minutes to remind her to go, and then it resets itself. If you had something positive (this thing lights up and plays a little song) to remind her to try, and then you could do your warm bowls of water? The trick with ABA is not that they typcially come in and wave a magic wand, but more that they have the ability to be extremely consistent (because they are there for a few hours instead of 24/7). If you had a tool to help you with the consistency part, it might hold you over until you can get therapy set up. (that’s all assuming this is behavioral and not medical. If you think she really is in pain, follow your mommy gut and talk to the doctor again). I will warn you, after about 5 months with the potty watch, my girl has become bored with it, and is still in diapers. Hope you have better luck!

    • Chiming in on the potty/holding it in issue. My son has a very difficult time simply relaxing his body enough to go until the need is so urgent that he simply MUST GO IMMEDIATELY. We’ve put him on a slightly loose schedule (roughly: TRY going potty every 90 minutes) and find that when he is distracted by singing a song or something, he can relax and goes fine.

      Also, young children have SO little control over their worlds that they will often control the only things they can: what goes in and what comes out. Don’t know if this might be at play with your daughter or not. I would suggest trying some of the techniques people have recommended and then, if there is still no improvement, start with a visit to a pediatric urologist just to rule out any medical issue. Good luck!

  7. This is a fabulous resource…thank you so much! I have never reached out to a support group before but am quickly realizing that I should have, and long before now. My daughter (9 yrs) has been diagnosed with Asperger’s. First it was developmental delay, then Asperger’s, then not Asperger’s, now possibly Asperger’s or severe anxiety. Whew…. She receives speech therapy at school, and spends time in the resource room each day. Overall, she is highly functioning, but there are issues that have me baffled. I have a very hard time communicating with her b/c she can’t stay in the moment. She is constantly in her own head, replaying a show she loves, or a funny moment she is recalling. I have tried making sure that I have her attention before I begin speaking, but she quickly disappears. Example…last night I told her it was time for dinner but she never came out. I went looking for her and she was naked, preparing for a shower. When I asked why she was naked, she sd that I sd that it was time for a shower. We had a little laugh about coming to the table without clothes. lol
    It seems simple enough but it happens ALL the time. She is really beginning to struggle in school b/c she can’t keep up with subjects like science and social studies. She has become a decent reader but only with ‘fun’ books. Textbooks have far too many words that she has never heard before so she does her best to memorize and then she just guesses for the rest. They do in-class study sessions, and are even told which pages to find the answers for their study guides. Even with all of that, she usually gets failing grades b/c she isn’t listening during the study sessions and then just guesses on the study guides, in spite of basically having the answers right in front of her.
    I guess the issue is comprehension and focus, and I am at a loss as to how we can achieve either of those.
    The other struggle is that after all of these experiences with her, I am now convinced that I am struggling with whatever it is that she struggles with, but mine was never diagnosed. I had almost identical struggles as a child, but somehow learned better coping skills than I have been able to teach her. It’s very difficult to know how to help her when I am unclear as to how to help either of us.

    Any tips on communication or comprehension….or sanity? :) I think I just needed to vent more than anything, so thanks for listening! I’m sure I will post again…b/c I could keep writing all day and never get all of it out. Have a nice day!

    • Hi! I was wondering if you ever used visuals or PECS with your daughter in the past. I’m wondering if that might be a useful place to start. My son is a little younger at 6 yrs old, but I find that to really make sure he stays in the moment, he still needs visuals from time to time. They use them on the bus with him to remind him of the rules because when relayed verbally he doesn’t always hear it. I’m just thinking out loud, but I wonder if you were to give her a PECS picture of “dinner” as you said it was time for dinner, then she’d have it in her hand and know what is coming. It may help at school too for visual schedules as it’s also being told to her.
      I have a similar problem as an adult…if someone verbally gives me directions somewhere, I’m lost after step 2. But if I have a visual map and written directions…no problems.
      Good luck!

    • Hi Chelsea, wow do I know this one! (With my 11 yr old HFA/ aspergers.) As he likes to say “Mom, could you please be quiet? I’m thinking right now…” Why be out in the world, which can be so tough, when you can be having so much fun in your head? In addition to various therapeutic interventions, one thing that works with him is making a hand phone. You know that shape you can make with your hand that looks like a phone? I pick it up and say “ring, ring!” and he picks up on the other end! Never fails. A small whiteboard that we carry around is another way we communicate when he’s in his head. I write on it, hand it to him, and he’ll write his answer. It gets him engaged in the conversation/ exchange. I liked akbulter’s response, too, and am looking forward to what others have to say!
      Karin

    • Chelsea–

      Another possibility to consider is an auditory processing issue. Sometimes it can be difficult to filter what needs to be heard from the rest of the noise, hence the difficulty with attention span especially to spoken direction. Our 9 yo son still has auditory processing issues, but Tomatis therapy was very helpful for him. Warning Tomatis is still controversial, not helpful for every child and can be expensive but was very helpful for our son. I would carefully screen your provider and make sure there is pre-testing to see if auditory processing may be an issue with your daughter.

      We have also found that when listening seems to be a problem a tap on the shoulder to get him focused on me and what I am saying can be a helpful small reminder to bring him to the present task.

      • Yes! We found therapeutic listening to be very helpful. It was 5-6 years ago so I’d almost forgotten. We’d always thought auditory processing was part of my son’s puzzle but he always came back in the “normal” range when tested. Yet clearly he still benefitted from some intervention in that area.

        In that same vein, we also asked for (and still ask for) extra processing time in his IEP. Teachers often repeated and/or restated directions for him to make sure he was getting what was being covered.

    • Hi Chelsea, Your daughter’s evolving diagnosis is almost identical to my son’s. (He’s 12, almost 13). You mention anxiety…is she being treated for it? For us, the anxiety seems to be the key component and when it’s under control he is much more engaged and in tune. For him, sertraline (generic Zoloft) was literally a magic bullet. I know meds aren’t for everyone but they were a livesaver for my son. He’s recently weaned off them, by the way, and so far so good.

      And for what it’s worth, I think I also had/have many of the same issues, yet milder. I think that’s fairly common today…kids ending up with “magnified” versions of issues their parents faced.

      • Thanks so much for all of the responses! What an awesome feeling….to be heard. :)
        There was so much I left out, in the interest of space (and keeping others engaged lol), so I will add-on here. She had visual schedules in her earlier years at school but then expressed to us that she no longer felt she needed them. The start of a new school year always brings about the need for one, until she learns the routine, but we have never really had one at home…probably b/c I am such a scatterbrain as well. It’s a shame that ‘life coaches’ are so expensive b/c I sure could use a life makeover. lol I often tap her on the shoulder or hold her hand before I start talking but if I talk for more that 5-10 seconds (sometimes a little longer, depending on the subject), I have lost her again.
        Anyway…she has also been tested for auditory processing issues and she tested in the normal range. I had her tested again, but a less extensive test, and it was normal as well. At the moment, she is taking Methylin ER and sertraline but has only been on them for about 4 months. I was hesitant to try pills in the beginning…convinced that mommy could make it better, I guess. I’m glad we went this route b/c I do believe that it’s helping, but while adjusting meds it feels like the wait is endless.
        We live in southern Illinois so we don’t have a lot of resources around here. My daughter is in a small school system with very caring teachers and I am convinced that love and care from them, combined with all of us having a ‘never give up’ attitude, has got her further in school than any therapies that have been available.
        Another question…my daughter loves tv. And when I say love I mean she LOVES it. I know how much peace and happiness it brings her to get lost in her shows but I also feel that it’s part of our problem. Where do I find the strength to take away or severely limit her favorite thing, or do you caution against doing that? It’s hard to get her outside b/c she is terrified of anything that buzzes. She doesn’t care for sports b/c she doesn’t have the patience for learning. When she tries the first time and doesn’t do it perfectly, she cries and quits.
        My hope is that by limiting tv I can possibly pull her out of her own head a little more, possibly get her more interested in reading books to stimulate her own imagination, or develop a hobby. Thanks, in advance, for any advice…..

    • An idea that might work here is using a WebCam to record instructions be played back for use with video chat. If TV is that absorbing to her, using it is a medium of communication might be effective. I know that this won’t always be practical but it might work. . The reason I think this is because I’m an autistic adult that is easily absorbed by TVs. I have found I can absorb information through TVs much more quickly than I can from verbal. I don’t know why, it just seems to work like that.

      John Mark McDonald

      • Thank you, John. She has an iPad and uses Skype to talk to her grandparents..maybe I can use that. I welcome any and all ideas…this was such a fantastic idea!

  8. Watching this happen… Just so awesome, so incredibly awesome. (and trying to subscribe to comments again, didn’t work the first time. ;) ). So amazing… I am forever grateful to be part of this community.

  9. LOVE LOVE LOVE THIS! Why didn’t we think of this sooner?? Thank you, Jess, for your sort-of accidental cry for help – see how well it all turned out? :-)

  10. Chelsea – For some reason I can’t reply against your post.
    Another thing to test/look at is her working memory, my son has really struggled since year 3 at school because the working memory problems become exacerbated with the fact that from year 3 onwards, it is a lot less visual, a lot more talking and since the kids are supposed to be more independent, instructions aren’t repeated as much – so all the crutches that were there for all the children seem to be removed around year 3 and that is when things start really falling apart if you have a working memory problem. Using the Super Duper Auditory Hear Builder software (not that expensive) has highlighted where the problems are and helped (I feel) as they also provide strategies – the http://www.superduperinc.com/ page has some great resources and for anyone that knows their cards in a box, they have converted many to apps now and they are brilliant. Also Difflearn has Earobics on special at the moment and I know that is used for APD – not working memory

    • Yes! Great tools (the Earobics, too) that my son’s old resource teacher and speech path used with him and similar peers. I’d forgotten about those, too! I think I’ve blanked out some things, especially if they appeared during a stressful time in our lives.

    • Chelsea, wanted to reply to your comment above about limiting her TV. It is such an ongoing dilemma for us: To indulge the obsession or discourage it? My son’t current obsession is sports on TV (ironic that he has evolved into a obsession that is socially acceptable!). We try to keep a balance (easier said than done, I know.) and not discourage it completely because we know it calms him and gives him a chance to unwind from the stresses of everyday life. He’s actually gotten pretty good at monitoring himself because he now worries that too much screen time is unhealthy, bless his heart, just like he worries that the chemicals in Diet Coke are poison to me!

      I seem to always come back to how hard he works every day to function and how little he has in the way of joyful, easy interaction…so how can I deny him his one true pleasure? Sorry, that’s probably not very helpful right now.

      • Audra, You have no idea how much help it actually is to me! Just knowing that someone else has felt the same way about this subject…i love this part the most, “I seem to always come back to how hard he works every day to function and how little he has in the way of joyful, easy interaction…so how can I deny him his one true pleasure?” That’s fantastic and exactly how I feel most days, but I guess I worry that my desire to make my child happy could be hurting her. Goodness…sure wish this could be just a smidge easier. lol Thanks so much for reaching out!

  11. Ok I need some help. We recently took my 13 year old autistic son off of anti-psych meds after being on them for 7 years. I am so happy this happened as now he is present, and talking more. The problem… He now gets stuck on one thought and can’t let it go. Right now its waterslides. We recently took a trip to a waterpark and he LOVED it. Now he wants to go back. Like NOW. He is wearing his bathing suit under his clothes to school. We have tried redirecting, telling him its broke, closed, tried to tell him we can’t go right now. Nothing is working. To the point that he was running around the house yesterday screaming. I had to give him his anxeity medicine and wait for it to kick in just to get him to settle down. Having to deal with my son having such a STRONG opinion is brand new to me, and I would appreciate any advice on how to handle this. I love that he is expressing himself now, but need to find a happy medium. After all we have been through in the past couple weeks with him detoxing from the old medicine and now this, I am just at the end of my rope.

    • We’ve had a very similar situation. I’d suggest scheduling a time that you *can* go back to the waterslides, then writing it on a calendar and putting the calendar up in a very central, visible place. Then, each day until the day, you can look together and count down how many days are left until you can go. My kid’s biggest hurdle with this stuff tends to be the anxiety that if she doesn’t go RIGHT THIS VERY SECOND that means she’ll never go at all. So finding a way to show her that not now doesn’t mean never tends to be really helpful. Incidentally, it’s also helped her understand time. ;). Good luck!!

    • We have also dealt with this in numerous analogous situations. My son wants to go visit certain stars of television programs he enjoys, which we have explained cannot happen until he is 18–by then we hope to be able to explain that stalking is illegal. I agree with Jess that scheduling a time when you can go is very helpful to diffusing anxiety. We have found that even if that time is a year or several years away as long as we have a commitment to a return trip, the perseveration and anxiety diminish. But only make the commitment if you can live up to it because the whole system only works if your child can trust that you will follow through on the commitment later. But also look at it this way–what a powerful motivator you have just found. Certainly a return trip could be used as a reward for meeting other expectations.

  12. HAs anyone ever had to get a Religous exemption for vaccinations? I need to register my daughter for Kindergarten and I can’t because she is missing her MMR and a few boosters. We are in NY and that is the only exemption we can get…just looking for some info on what to say. We have already done her annual review…b ut I need to get her CSE transition meeting going and they “can’t” until she is registered. Help……

    • I did not realize that each State could individualize the exemptions. I am in Ohio and we have Religious, Medical or Philosophical. Have you obtained the form? You may simply just need to “sign off” and check a box and if your only box option is “religious” then, in my opinion, check it. My daughter has only received a tetanus booster since she was diagnosed at 2 1/2. ~Becky

      • No in NY only Religous or Medical are options. Which is horrible…because I can’t get any doctor to give us a medical and it is not just a check box. You have to explain your religous views…and can be subjected to “sincerity questioning” and possibly asked for backup documentation. Since we are catholic…..and there is nothing there to “forbid” vaccines….I basically have to concoct something! It is just to get her registered and move on with our lives and the services she desparately needs. You are forced to act a little crazy. Just wondering if anyone else had to do this???

  13. Stepping out of lurking to say thank you for this wonderful resource… I look forward to helping and being able to ask for help.

  14. My son is 6 years old and has to have a root canal surgery. However he has astmah – the doctors have told me that they will have to put him to sleep for the proceedure.

    Is it safe to put a child this young to sleep for surgery? Also considering he has astmah?

    I need help from all the Moms out there. Has anyone gone through this before? I am just really woried.

    Thanks in advance for all your help!!!

    • Miguel, assuming it is being done at a hospital facility, yes, it is. When they put him under they will have an entire team monitoring all of his breathing, heart rate, etc. they will also, most likely have you give his inhaler or nebulizer treatment the morning of the root canal, too.

      My eight year old has had many surgeries in his life, including when he was 19 days old. He has respiratory issues and has not ever had trouble with sedation. All that being said, make sure you talk to the doctor or team performing the procedure and voice any concerns and ask as many questions as you need to to feel comfortable with it. No question is silly except the ones you don’t ask but wish you had. :)

    • Miguel, my daughter is 9 and had oral surgery last year. I was very nervous as well but it turned out to be a wonderful teaching experience for her. We were careful to go over everything so there wouldn’t be any surprises. She was a little nervous but mostly wanting to be reassured that she would be completely asleep. After it was over, she never required any of the pain meds that were sent home with us, and she even said “wow, surgery isn’t as scary as I thought!”
      Ask lots of questions so that you feel comfortable with the surgical team, but I am sure that all will go well. Best of luck to you and your son!

    • I’m an autistic adult and I had oral surgery, and I remember them asking me to count to ten and then wondering when they were going to start and then they said “all done.” It was alot better than when they used shots that were never fully effective on me, which was a nightmare every time.

      John Mark McDonald

  15. need help! I have a 7 year old girl with AUTISM . She is mostly non verbal.
    we got an Ipad but i cant find sample communicaion pages anywhere that are relevant do daily living.
    anyone? i feel that parents that have been succesful at making pages should share…. i would and once i am succesful i willl….
    fee very lost

    • Hi Shallada-
      My daughter uses a PECS program on the IPad called TapSpeak Choice. It has been working well for us, but it is pricey – so is proloquo2go that the earlier poster just mentioned. Before we invested in TapSpeak, we tried some of the free communication apps out there, just to see if it would work for her in general. One that was pretty easy to manipulate was Choice Board Maker (free!). (There is also a free app called Autism Apps that shows you different apps recommended by parents with reviews and prices listed.) You can upload your own pictures into both of these programs in addtion to the pictures already included. I’m not sure if you have an Apple store where you live? I found the folks there to be extremely helpful. Many of them are actually trained on these programs, and give you honest feedback on what they liked and disliked and what different teachers liked. I do wish you could give these apps a “test-drive,” though – especially the pricey ones.. We have considered proloquo2go for my daughter, but it looks like it may be too complicated for her just yet (too much scrolling through pages) as she is only 2 1/2. It is available on the iphone, which would be easier for her to carry around… But TapSpeak is working great for her. I think the big thing to remember is start small and start slow. We offer two choices on each page for now. (more / finished; yes/no; books/watch tv; eat/play; etc..) Then we will add three… Then we will start to add navigation buttons that switch pages for her. Any program you choose should let you start small. As far as daily living stuff, you can create your own pictures and words (the app can read them for you), in most if not all of these programs, so just start small. I know it’s really overwhelming, but take it in baby bites, and be patient.

    • Thank you all so much for your help, i have proloquo and go talk now and talk tablet….. they all have their vertues- what i am trully having a hard time is with page customazation and language build up.
      proloquo can be a maze…how to customize and make pages that are appropiate and meaningful for a 7 year old girl and how to simplyfy proloquo so that i dont loose her in the complexity of the linked pages…
      You are all amaizing for taking the time to respond to my desperate plea
      what i think i was trying to ask was for a place were parents even my self can load copies of the pages we have built as an example for other parents who struggle with this like myself

  16. There is an awesome app called AutismApps which has lots and lots of useful apps all categorised – brilliant.

  17. We just finished (finally) the school system’s evaluation process for ASD. We actually school at home, but our son needs services and this is the only way for us to get them right now. One of my problems with this whole process is that basically since he was an infant we knew he was different. We spent the first 7 years of his life telling pediatricians, teachers, and anyone else who would listen that he was different and that we had concerns. We were always reassured that he was developing “normally”. Now, after a year of speech therapy through the school system, someone finally sees what we have always seen and they agreed to evaluate. I know in my heart that he has autism. I don’t need some do-da who has spent the past 7 years ignoring a mother’s concerns now be the one to confirm what we already know. I want to tell them to shove it and go to hell.

    There’s already been talk by them about him needing to be back in school so he can learn social skills. The times we have had him there for the evaluation testing have been terrible. He comes home after an hour or two and rages then has a meltdown the rest of the day. Do we think that it is in his best interest to go there for 7 hours a day so that he can learn how to interact with his peers? Hell no.

    At what cost would we be doing that? For our child that cannot articulate how he feels…our child who cannot put words to the emotions…we would be causing more harm than good just so he could learn how to socialize better.

    And…I’m afraid of them trying to tell us once again that there’s nothing atypical about him…that he is really developing “normally” and that we have no idea what we are talking about.

    In a few hours, my husband and I will be meeting with one of the school system psychologists. She will go over the evaluation with us and answer any questions we may have. I feel like I’m going to throw up. And cry. Because as much as I already know it…we have been fighting to get him the help he deserves for years…for a “professional” to finally acknowledge it is probably going to push me over the edge.

    Thanks for listening.

    Kate

    • I am so sorry that you are having such a challenging time. Please remember that you are the only person in the world that knows what is best for your child.
      You and your husband need to decide what will work for your family and then see which ,if, and how the resources available out there would apply to your family.
      Its easy to forget but you are in charge and yes this process is overwhlming.
      but there is always hope. Autism is a challenge but its also an incredible journey. filled with beautiful chos, advocay battles, and trully earned sucess.
      My daughter was diagnosed at age 2 and trully she has been my teacher.
      We may always mourn the child we planned to have once in a while but belive you me My little girl is the most amaizing hard working happy little one on this earth.
      much love shallada

    • I agree with the above and would add that there is a reason for a diagnosis. The reason for it is that it gives you leverage. As soon as he is diagnosed, he becomes part of a federally protected disadvantaged minority that has extra rights and protections under the law. This can help you get them to pay attention and help you find and receive services. It is by no means a guarantee, but it can be helpful.

      John Mark McDonald

    • Ok so…we are back from the meeting. As much as I already knew it, I can’t believe how unbelievably difficult it was for me to hear them say it…the diagnosis they gave us is only for educational placement purposes…it’s not a medical diagnosis (whatever). He definitely falls into the Asberger’s category according to them. We meet next week for the case conference and IEP. We have a lot of thinking and praying to do between now and then. We have two other children (who of course, we also school at home)…my husband is thinking that if we send our son to school even a bit of the time to get the services he needs and deserves that we would have to send the other two full time. I know he is worried about me…he thinks I’m about to break…I feel like it sometimes…because it has been 7 years of doing it on our own…but this isn’t about me. I want our son to have the best possible chance at success. (Of course, so does my husband.)

      I think we have to look at what our goals would be for our son…what are his needs. He does not struggle academically. (He struggles with how information is presented to him.) He tests high average for his age in reading and math. The area he struggles with is social development. He is below age level. I guess I wonder why we would send him to school for 7 hours a day to work on social development. It’s not like we have our family locked in our house with bars on the windows. We go out in the community. The kids are involved in several different activities.

      I don’t know…I feel like I’m fighting my husband on this one. I have no problem with the actual school. It is a good school…the people are nice…the teachers are good (for the most part). I just don’t feel like it is the right choice for our son or our family.

      Why does this have to be so hard? The main reason that we reached out for help yet again was because we have been having so many behavior problems with our son related to him not knowing what to do with the emotions he feels. How did we go from that to talking about putting him in the public school system?

      You are right John Mark…this is a necessary step to get him the help/rights/services he needs and deserves. Thank you for the reminder.

      Thank you for the encouragement Shallada. I really appreciate it.

    • I am so sorry you are going through this.

      There are a LOT of EFFECTIVE treatments out there that can really help your son learn to socialize and manage and understand his emotions.

      The diagnosis is your friend because it qualifies you for all sorts of services through medical insurance, mental health insurance, and through the school system. Our experience with the school system was that once one person finally understood what they were seeing, the others came on board. If not, it might be worth trying to get a diagnosis by paying for your own assessment. You want to use a psychologist who has had a LOT of experience with diagnosing kids on the spectrum who are your child’s age.

      Even if he doesn’t go to school he can improve his social skills and emotion management. There are as many different ways to deal with ASD as their are people with it.

      Good luck

      • Some detail that might be useful.

        With a medical diagnosis (by a psychologist) health insurance usually covers:
        1) weekly psychotherapy that can really help you son to recognize his emotions and how to manage them (sometimes there are short term caps on therapy services so you should check details with the insurance company)
        2) weekly speech therapy (though the insurance company will likely have hoops you must jump thro before they will pay for anything so check their rules) which will deal with social cognition (what is the other person likely thinking if they are saying or behaving in a certain way – and what are they thinking of me if I am speaking or behaving in a certain way). You will need to find a speech therapist used to dealing with spectrum, especially high functioning ones.
        3) weekly occupational therapy to deal with any sensory issues, and some of your sons behavior may be due to sensory integration issues. Again most insurance requires an assessment and a formal plan before they will pay for this.

        Depending on the state you are in or the specific insurance you have (assuming you have it) your insurance might pay for a weekly social skills group. I really like groups that use a lot of Michelle Garcia Winner’s work on social cognition.

        Depending on the state you are in and the specific insurance you have, your insurance may cover 20 hours a week of ABA (applied behavioral analysis). Depending on how difficult your son’s behavior is in the home, you might qualify for this under regular mental health/medical insurance. Again usually this won’t be covered without an assessment and formal plan and goals.

        While it is great to have all these services, the out of pocket expenses are still hefty (we run about $4000 a year, though they can be much cheaper outside California). And you have to take a very zen-like and detail-oriented attitude in dealing with the insurance company (regardless of where you live).

        To get the medical diagnosis, you can use the school diagnosis and ask your doctor to authorize an assessment. Once you have that in hand, check with your medical insurance about exactly what they will cover. Chances are you will have to go out of network to find an appropriate specialist.

        For my son who was diagnosed at 6 and who is academically brilliant, but socially and emotionally slow, I have found reading Michelle Garcia Winner’s work really helpful in understanding what he is struggling with.

        What having your son at public school might be able to give you –
        Speech Therapy
        Psychotherapy
        A behavior plan
        If he is not in a regular classroom but in a special education room he will be taught in a very small group, they can also get a behavior plan in place (in special ed or a regular classroom) and have an aid with him 7 hours a day.
        Its worth discussing with the school behaviorist what your concerns are and what they think the best placement for him might be. They often have a lot of experience and can come up with a good plan. In our public school, some of the most academically able kids are in special ed. At least at our school, you do not have to worry about him not being served academically in that setting.

        Hope that’s helpful.

    • I’m a 42 year old man with Asperger’s. I came from a time when they did not diagnose people with autism and had to struggle through school all the way to Masters level without the help of a diagnosis. I was always told that I was to smart to be having problems. If I was having any problems it was because I wasn’t trying hard enough. I had to get a diagnosis the hard way; a degree in psychology. The other good thing about a diagnosis besides the help gives you access to, is a really does let you know what you’re up against. I now know why some things are hard and what I need to work on. This would have been amazingly helpful for me as a child.

      I really suggest that you start looking for blogs and websites by autistic adults. Autism never goes away, but you can adapt. There are many successful autistic adults including those for leaders in their fields. this is not some sense you have to serve; there is real hope out there. Your son can learn to be successful and thrive, but it’s going to take some work in areas that are not normally addressed.

      as for the issue of socialization in school, you’re right to be worried in that simply throwing him into a school situation will not help with socialization issues. Having Asperger’s means that you not get social concepts by association the way non-autistic people do. People with autism have to study how to be social; and it needs to be that blatant. The good news is that there are any number of autistic adults who’ve mastered such things and proven it can be done.

      While it is true that it is helpful to social development to be around other peers, this is not enough in another itself. As a parent, you can help make the difference. What he needs is a guide for social situations that are confusing. He needs someone to come to when he doesn’t understand what just happened with other students or teachers. Now that doesn’t mean that you need to have all the answers personally. That’s what the online community is for. I would suggest frequenting sites for autistic adults like wrongplanet.org, where you can ask questions of autistic adults who have faced similar questions and found answers. I can’t really speak for anyone else, but I can tell you that if I had such a resource growing up, it would have made so many things so much easier.

      I will always be available to help in anyway I can and there are many other places you can look as well. You can always contact me by e-mail at Scintor@aol.com and I will do my best to help you or at least point you towards another resource that could help.

      John Mark McDonald

      • Thank you for your post. We have a daughter who is almost 16 and just now being diagnosed. For the last 15 years we have been trying to get someone to notice, to help us help her. We’re with Kaiser and because she is so very high on the spectrum, there is a 50-50 chance that they will diagnose her. But yesterday — after all these years — we finally found a counselor who herself has a son on the spectrum and who told us, confidently and with the most encouraging smile “I will not try to ‘fix’ your daughter — she is not broken. I will try to help her learn to navigate through her world, focusing on her strengths and helping her meet her challenges.'” I wanted to cry. Finally, after all these years, it feels hopeful. The social stuff is the worst — but right now I think we may have found someone who can help smooth her path. I will also keep fighting for a formal diagnosis for all the reasons you mention. Your post is like a light pointing to the future. Thank you.

  18. Ok so I’m googling dsm iv to find the criteria for aspergers to prepare for appt on tue and I’m not sure what I’m where I should be. Is there a specific website address or place that I can type in to find the actual criteria. Any suggestions would be greatly apriciated. Not as Davy as I’d like to be when searching stuff online.

  19. Hi again. We need some assistance in the department of telling our kids about the Asberger’s diagnosis. I think we feel comfortable talking to our son about his diagnosis. We are concerned about telling his 10 year old sister (she’s older). Does any one have any recommendations? Any books that might help her understand her brother a little better?

    Thanks bunches!

    Kate

  20. I love this! Thanks Jess! :) I have several questions re autism and play, and Floortime. My son has mild autism (not PDD-NOS or Asperger’s) and thankfully does not deal with a lot of sensory/behavior issues. He is very weak, however, in the area of play/creativity/social skills when it comes to relating to peers. Because he is not a “challenging” student, he seems to sometimes “slip through the cracks” at school. Right now in his integrated preschool he does not require a dedicated aide and does very well in a lot of the academic areas (he does receive speech, OT, PT). There seems to be little emphasis on play, learning to play creatively, and interacting with peers…instead I get comments from his teachers like, “When he’s older he’ll learn how to relate to kids through video games.” He has social IEP goals but they haven’t seem to work too hard to show me how he’s reaching them. I am wondering in this day and age how much I can argue that play/social skills MUST be incorporated into his education, for example, even during recess? He is 4 and in pre-K. It’s sad to me that even for typical kids play and recess are being shoved aside to drill them for standardized tests, etc.

    Also – while his school’s program is ABA-based, I follow Floortime principles at home. There are no Floortime therapists in our area, that kind of therapy is not covered by insurance, and we don’t have the finances right now to pay thousands for a thorough Floortime evaluation/consultation/training. I can’t seem to find anywhere online (a message board, etc.) where I could just talk to people who do Floortime and ask them some questions. For example, we’re kind of “stuck” in a certain stage and nothing I’ve read in the books really addresses my son’s specific issues. Does anyone have any experience in Floortime and could help me out just a little? Thank you sooo much! I would much appreciate it, as my son does not do ESY and every summer I am looking for strategies to help him with his play skills. Thanks again!! :)

  21. Hi Deb-
    I’m a little embarassed to say that I’m not familiar with Floortime, but I do agree with you that a wait and see attitude with regards to your son’s social skills is frustrating. My oldest has Asperger’s and we started him in a social skills group when he was 5. It worked wonders for him. I don’t know where you are located, so I don’t know if you have access to something similar, but I can tell you what they did. They established goals for him, such as “initiating play” where he would practice asking another child to play with him. All the kids in his group have some form of “high-functioning” (i hate that way of categorizing it) autism- meaning they are for the most part in mainstream classes and just need a little help socializing. (it is a separate therapy, not related to school). Anyway, the teacher would prompt him, “try asking Sam if he wants to race cars with you.” It went on from there, (other goals have been, maintaining a recipricol conversation with a peer for 3 or more exchanges, following group directives, playing with toys appropriately, etc.) and he is doing great. You could try this if you have a fairly regular group of children to play with, and you could do the prompting yourself. It sounds too simple to work, but it really does. It just takes patience.

  22. Mamabear99 (Kate) here again…
    We go for our case conference tomorrow. They are going to present an IEP for our son being in public school full time. Now, if you remember my previous discussion a few posts ago, we educate our kids at home.
    So, I have to say, I feel a little defensive already. Especially since we specifically asked to see what a plan with partial days or less would look like.
    Like this isn’t hard enough. Then we have to deal with people who appear to be ignoring what we are saying. I am not feeling good about this.
    Can someone please give some advice?!
    Thanks.
    Kate

    • go in with an open mind. listen. take it in. don’t respond on the spot to ANYTHING. sign nothing but the attendance sheet. it’s a conversation. remember that an IEP meeting is a TEAM meeting. YOU are a vital member of that team. so take a deep breath and hear what they have to say.

      in a lot of years of doing this i have found that the best way to be heard is to be willing to listen.

      oh, and bring cookies. ;)

      • Thanks Jess. I’m just feeling extraordinarily overwhelmed lately with everything that is going on with our son. Not to mention the fact that our youngest has been showing the same/similar signs of Autism for the past year. I’m just tired of always feeling judged. Judged for the way they behave. Judged for our decision to educate at home. Judged judged judged. I’m sick and effing tired of being judged.

        I know you are right…we need to go in with ears open, mouths closed. And, I know it’s my issue…the one where I want to tell them all to go to hell because after 7 years freaking years where I’ve been doing our own therapy at home because they all said he was “developing normally” now they finally see what has always been there and now they want to give us advice and tell us how to do things.
        When we brought our kids home from public school 2 years ago, we finally felt like we had our son back…we got him to reengage with us…reconnect with us. And I don’t want to lose him ever again.

        Of course cookies! Cookies (and chocolate) make everything better. :-)

      • Bring Cookies – that’s what I have been doing wrong ! :)

        By the way, always have a nice photo of your child on your folder or somewhere visible on the table so that it reminds everyone that they are discussing a real child, not just a statistic.

    • Hi Kate-
      I totally understand what you are saying about feeling judged. It is really hard for us to shelve our own emotions and try to focus objectively on what might help our children the most. I agree with Jess, listen, listen, listen. Then go home and really process it, and try to put your own emotions to the side. If you are worried about your youngest son, it might be worth considering “delegating” some of the therapy for your older child to the school district, then giving you time to find some answers for your youngest. Try your best to stay calm in the meeting, and treat it like business (even though it’s not to you). If you can, bring someone else with you that can listen as well, so you wilk have a better memory of what they are offering. In the end it is your decision on what your next step will be, but try to look at the long term picture – will this help him become more independent. That helps me. And cookies are good too. Good luck. We’ll be praying for you.

    • So we are back from our case conference/IEP meeting. I’ve let everything sink in for a few hours. Here’s the jist…

      As I expected (because they are required to), they presented an IEP for our son being in public school full time. I was very pleased with their plan. Their goals are right in step with our goals for him. They each took turns discussing their findings and plan for him. Then at the end, after we voiced our concerns, the autism specialist looks at us and said something like:

      What we are asking is that you sign this IEP today. We as a team
      think that this is the best possible educational plan for J. We feel that
      this IEP is the best possible plan for him.

      So, this is when I turned to the principal and asked her “Don’t we have 10 days to sign this or not?”

      That is when J’s speech pathologist (who has been an AMAZING advocate throughout our journey) spoke up and said, “Actually, you have 10 SCHOOL days to sign it. That means, you wouldn’t have to sign anything until August.”

      X gets the square.

      Anywho…the resource teacher starts talking again…trying to re-cap the re-cap. She said that to sum it up, J would spend 98% of his time in his regular classroom with his regular teacher and that 2% would be receiving special education services including:
      Speech therapy 3 times/month (which we already do)
      OT once/month
      20 minutes of writing help/day

      To re-cap for you:
      The autism specialist told us that the best thing for J to get the services he needs is for him to be in public school 7 hours a day. Followed by the sentence that he will spend 98% of his time in his regular classroom with no help.

      Are you following me here? Does this seem asinine to anyone else? If someone can explain it so that I can understand how that makes sense, go for it.

      That is all for now. Thanks for listening!

      Kate

      • Good job waiting to sign it- especially if you are not comfortable with the recommendations. Since I don’t know your son, I can’t tell you if that is enough therapy or not. Often therapy at school is limited to what would make a student “function” at school, so sensory needs, etc often get left to the parents. It may be necessary to get additional therapy outside of school.
        Devil’s advocate- your autism specialist may want your son to spend time modeling “typical” peers and that would be why she may want him in Tge classroom. If you think he needs an aid, though, you should tell them so. My older two go to a Catholic school, but bring a one-on-one aid with them (called a TSS here for therapeutic staff support) and their behavioral consultant observes once a week as well. That way they get the experience of interacting with “normal” kids, but have the aid to make sure they are successful. It has helped them immensely, but they are in small highly structured classrooms. (sorry about typos- typing on an iPod… ;). ) anyway, my point is, take your time to think about it. You just got the diagnosis. give yourself some time to adjust. There is no emergency here. He is the same boy he was two weeks ago. You just have some different opportunities to consider.

      • Erin — I do disagree with the lack of OT in the plan…I think he would benefit greatly from receiving OT once/week. However, my bigger concern is this:
        we educate our kids at home now. The school’s answer is that he should be in school full time to receive all of the services he needs. If he goes to school he will be receiving services 2% of the time. So, how does that really benefit him? How can they say that he needs to be there if they are only with him for 15-20 minutes a day? And that is only for help with writing?!
        I get the whole social skills perspective…that is an area he needs to work on. However, I’m more concerned about uprooting him from what he knows in order to give him 20 minutes or less/day of “services” that we could do at home. ( They said he would receive 15-20 minutes/day of help with writing activities.)

        If he stays at home like we have been doing, he is still eligible for speech therapy 1/week. And doing OT once/month is pointless to me…we have been doing OT at home for years.
        Since nobody ever listened to us until recently, we had to come up with our own therapy program…we worked with him on whatever he needed. When he was 18 months old, I bought a book and started speech therapy with him…did it for two years. He made awesome progress. We backed off when his only trouble was /r/ and /sh/ and /ch/. Again…the school wouldn’t do anything because those particular sounds weren’t a considered a delay at his age. So, when he turned 7 1/2 and still couldn’t say them, we again pursued an evaluation…that is how we met his amazing speech pathologist who has been such a great advocate for him and for our family. When he was three and we realized that he was having sensory issues but nobody would help him (pediatrician & preschool teacher kept telling us he was developing “normally”) we worked on those.

        First of all it isn’t like we live on a compound where nobody goes out and nobody comes in. We are social people. He has social opportunities in gymnastics and swimming at the YMCA. He has social opportunities in Cub Scouts, Religious Ed every Sunday and church. He has social opportunities every time we visit a nursing home to spend time with residents. He has social opportunities on our trips to the grocery, library, parks, friends’ houses. He has social opportunities with his baseball team.

        I guess part of what we were hoping for help with his his rage and emotional outbursts. The school is aware…we have told them many stories. His speech pathologist witnessed an event. However, they don’t have a plan for that. We even asked about it.

        I’m feeling like we are really no better off than we were before the evaluation except for having an official educational placement diagnosis. (Even though we already knew the answer.)

        Ugh.

      • That really is frustrating. I wish I had some good answers for you. Do you know if there is any ABA (applied behavioral analysis) available in your area? It sounds like you might need more of that than anything else in terms of dealing with the outbursts. I’ve been there with my son more times than I care to recall. His team works on coping skills with him now that he’s old enough to understand what that means. (I also managed to record one episode on camera- not only did it work wonders with the insurance guy, but I also showed it to my son, and he realized how silly he looked….)

        As far as sending him to school, as I said, I was just playing devil’s advocate. If you don’t think the social scene is what he needs (sounds like you’ve got that covered), then it sounds like they are currently not offering you much. Everything is negotiable, to a point. Think about what you think he needs, and see if they can work with you. If not, you may be able to secure those services elsewhere without having to send him to school full time. I’m not sure where you are, but in PA we have something called wrap-around services, paid for by a combination of private and state insurance (meaning it costs you nothing) where behavioral aides come to your home, out in the community with you and even to school. Perhaps that would be an option on some level?

        This sounds so frustrating. I am so sorry you are going through this, but your son is so lucky to have a mom as dedicated to his well-being as you obviously are. Hugs.

      • Thank you everyone. I appreciate that you have taken the time to reply. This is so helpful…to have different perspectives from people with different experiences…to be able to vent to people who have absolutely no emotional or familial connection to us. I am so thankful for this community.

        Blessings,
        Kate

    • In this kind of circumstance, what I would do is set up a bidding war. I think you are already doing a much better job than they’re proposing. In order to make this clear, I would make a document in the same style as their IEP, but replace their proposed interventions with the interventions you been giving him at home. I would then return the next to meeting with them and place the two side-by-side.

      I would then say something to the effect of, “I’m afraid I cannot accept this proposed IEP for my son as it’s clear that he’s already receiving better support. How could I possibly consider placing my son in a situation where he is not receiving at least comparable if not superior support.”

      The ball would then be in their court. If they don’t come up with a better IEP with more supports for your son, then say, “thank you for your time but it looks like you’d be best for my son for him to stay at home.” If they come up with a better IEP, then your son wins out in the long run. If not, stick to your guns, and keep your son at home. They need to remember here, that the most important thing in this entire procedure is your son. If the outcome is not his benefit, then there’s really no point to the whole thing.

      John Mark McDonald

  23. Hi all…Chelsea, again. lol I have another concern to toss out there. My daughter (B, almost 10, Asperger’s) is having trouble understanding or remembering (not sure which) what is and isn’t appropriate behavior at appropriate times, and I am not sure how to achieve this goal.
    If she interacts with the family, it is always on her terms (of course!) and on her time, but when she chooses it, it is usually some type of tickling or semi-wrestling or general roughhousing. We navigate things pretty well at home, but last night presented a new challenge. My youngest is playing softball and we were at a game. Toward the end, B and another child were playing and chasing and then a few of the parents got involved and everyone had a ball. However, B tries to tickle and wrestle these children and adults too, and not everyone understands or appreciates the situation. To make matters worse, I have to watch her very closely b/c she has a tendency to tickle at random and her hands can end up in places they shouldn’t. I know she isn’t intending to touch anyone in their “private areas” but sometimes she does, or the other person simply doesn’t want to be touched by a 9 yr old, with or without social graces.
    We have talked, a LOT, about what is and isn’t appropriate, but when I quietly remind her that she needs to keep her hands to herself, she looks so defeated and deflated. I’m not trying to steal her joy, only to keep everyone happy and not feeling uncomfortable or violated.
    Any thoughts, comments, advice??? Thanks, in advance! :)

    • Chelsea,

      Our son is the same way. And he’s rock solid and has no concept of his brute force. He loves to wrestle and the deep pressure sensation it brings…he loves being tickled too, but not lightly…that only irritates him.

      Carole’s suggestion of social stories works for us too…for just about everything (usually).
      We have this problem when he wants to wrestle with his friends for example at Cub Scouts…the boys feed off of each other and it turns into a madhouse quickly. The problem is that when the other boys are done, they stop…our son keeps going and it leads to problems which gets stressful for me as a parent. However, I find that when I can take the emotion out of my voice and just tell our son things in a matter-of-fact way, he tends to not only take it better, but he seems to process it easier. I suppose this is because he isn’t trying to decipher the emotion on top of trying to figure out what I’m telling him.

      Kate

    • I have a large autistic son as well loves to wrestle and tickle. I dealt with it by wrestling with him a lot and letting him know that he was a very big strong boy. Whenever you do something that was potentially damaging, I would stop and remind him that he need to be careful and gentle because he was strong. (And I collected quite in collection of bruises while teaching in this lesson.)

      Another idea is to get her used to the rule that as soon as one person asks to stop, the game is over. Even without this kind of situation, it’s a good rule to have.

      John Mark McDonald

      • Tommy is the same way. We wrestle him at home for the deep pressure release and to burn off his energy, telling him what a big, strong boy he is. We worked on gentle touching for quite a while. And we still need reminders occasionally.But it has worked tremendously well.

        Tommy is having a hard time with the part about it being over when someone asks for it to stop. There are so many ways to say “stop”. He gets confused.

  24. Chelsea,

    My son has a similar issue with tickling and rough housing. He can take down a kid more than twice his size in a heart beat with his Very professional wrestling moves. Explaining does not work. Showing gets confusing. The only really useful tool we have found is social stories. When we run out of ideas for them his teacher at school has been invaluable. I learned some great tips from the Gray Center.

    http://www.thegraycenter.org/social-stories/how-to-write-social-stories

    • I will look into that, thank you! I had forgot to mention her size earlier, but she is built like a tank and does not know her own strength. She is completely tenderhearted and means no harm but she just doesn’t realize how strong she is, and how tickling isn’t always as much fun for everyone else as it is for her. :(

      • Tommy is in the same boat. He is twice the size of every kid in his class. And he is just having fun. It breaks my heart to tell him no when he is playing with “good intent”. I think that is another reason we prefer social stories. It is an easy out from having to be the bad guy who is always saying no. Good Luck!

  25. I am not very succinct, please bear with me.

    My 6 year old son, dxed with pdd-nos and is mainstreamed.
    We just had his first re-evaluation since age 3. The school psychologist recommended going back to our DX doctor and have him *undiagnosed* and have the autism removed from his record, in case he wants to have a top security clearance job in his future (like my husband, who is undxed). They suggest getting his dx switched to ADHD.

    On one hand, my son is doing incredible – especially when we thought at age three, he was considered violent and we were not functioning as a family – he spent the majority of his day in a meltdown.
    Now, he fully participates in class, including most recently (Feb ’12) – being able to change teachers successfully without an aid, to participate in his reading-level class. Most people (including teachers) do not have any idea he is on the spectrum (mostly because he is a rule-follower).

    On the other hand however, his day is structured and scripted; which has helped him thrive. He can not tolerate the gen-ed bus. He can not tolerate lining up for recess, sudden noises or touches, or other people not following his scripted routines/following the rules.

    He still qualifies for an IEP – but only in one area: adaptability. I’m assuming next year we will have to roll over to the 504 plan (which I refused this year).

    I am wondering why the school would suggest removing his autism label. Do they have something to gain from it? IS it truly better for his future to NOT have a DX? They would like to have him (and his NT twin) tested for highly-capabile. Is that something they can not do with a DX?

    I do not want to hold him back, but I do not want to be duped into giving up our legal protection.

    His NT twin, who I suspect to be very ADHD, lost his IEP last year due to graduating from speech (which I didn’t agree with); now that we are looking at ADHD and sensory issues, we do not have legal protection and battle his teacher almost weekly about using aids (chewy, and having an aid remind him to go to the bathroom – he comes home soiled once a week).

    My question really is: why would they encourage me to have him “undiagnosed”? Do they have something to gain from this? Can they graduate him off of an IEP if he no longer tests as needing one – and just needs supports?

    What kind of supports would be available/are typical with ADHD kids with or without a DX?

    • Oh, and although he is working at ‘pier-level’ for fine motor skills (writing, drawing, cutting) – he is receiving low marks for rushing and not being able to draw well, nor form his letters on a line and with punctuation/capitalization. That wasn’t marked as a qualifer for him, but if he gets low marks, how can it be pier level? Do schools consider anything “not completely failing” to be pier-level?

    • I don’t want to sound paranoid here, but this sounds like they’re trying to do it for their benefit not his. What sounds especially weird to me is their basis for doing so. High security clearances go through all of your records not just the latest ones if they have a question with autism and they will question it even whether it’s been undiagnosed or not. I know an awful lot of schools are facing pressure to cut down their social services simply because of budgets.

      On the other hand, I don’t think they’re trying to dupe you and are taking away your legal protection. I think they are being pressured to cut down on their special needs kids load and are therefore wanting those who are doing the best to no longer be special needs.

      As someone who’s had Asperger’s 42 years as well as two children with Asperger’s I really don’t believe it’s something that goes away with training. It’s something you can learn to adapt to. The only possible reason to undiagnosed someone would be they never had first place. Even if he’s adapting perfectly well to a main treatment environment and handling the challenges that come is way, it will always be something that affects his life.

      I especially wouldn’t do this at the age of six. He still has an awful lot of developmental and social hurdles coming up. Even if he’s doing very well now, that doesn’t mean that there’s not going to be things coming up that he’s going to need help with. It seems like there’s a misunderstanding here that you cannot be on the spectrum and be high functioning. I went through school in honors and AP classes, but that didn’t me I didn’t need help in certain areas. Of course, back in those days, there wasn’t any help available.

      Autism doesn’t mean that you sit there in special ed in this disability services all your life. There are plenty of very successful professionals with autism. It doesn’t mean that you’ll be unable to function. It does mean that there will always be times which you will need some help in some areas. I think that this request to undiagnose your son simply comes from a basic misunderstanding of what autism is on their part.

      John Mark McDonald

      • Thank you, John. That is exactly what I needed to hear! Legally, can we keep an IEP if he doesn’t need accommodations? Currently, they tested him and said he only needs accommodation in one area – but like you said, that can change with the developmental and social changes the future holds.

    • It sounds to me like you already know what you should do. It sounds like you don’t agree with removing the diagnosis. You should follow your gut on this one. If he has no diagnosis, the school saves money on services they don’t have to offer him. You know your child best. Also, many children develop more issues as they near puberty. It might be harder for you to reapply for services by then if you lose the diagnosis now. Follow your own intuition on this. Good luck.

      • Yes, I do not agree with removing the diagnosis – I want to keep the legal protection if we should need it in the future. It just really surprised me that the school would suggest having the DX reversed because he has progressed. That the school saves money makes perfect sense to me – that gives me understanding at why they would suggest it.

        I do worry about future issues, especially around puberty and changes in schools as he ages, etc.

        Are we entitled to keep him on an IEP if there are no accommodations necessary at this time, other than giving him advanced warnings of changes? Can they legal force us off an IEP if they determine he does not currently need services?

      • The Individualized Educational Plan (IEP) was created to keep schools from warehousing disabled and troubled students by putting them in one classroom that was out of the way and then ignoring them. I know this because I’m from the generation when they used to do this. It forces the school to, when they find a problem, at least think about what to do about it.

        Not having an IEP simply means that a given child does not have any problems or disabilities that warrant any specialized instruction or accommodations. Having said that, I cannot conceive of a situation where a child with autism would not benefit from an IEP to at least communicate to the teachers and staff that they are on the spectrum and may need leeway in certain areas. To put it another way, someone on the spectrum will always be an autistic person in a neuro-typical world. This will always present challenges and opportunities that are different from the norm. I say this as a 42 year old man on the spectrum with two children on the spectrum as well.

        As far as I understand, being on the spectrum is a federally recognized disability, and therefore you are always entitled to a IEP, even if there are no extra services required. As I may have said before, the focus of an IEP should always be focused on the welfare of the child involved, regardless of any other considerations. I would simply remind them that ASD does not go away, no matter how well the child is adapting. As long as there is a disability, an IEP is basically a requirement.

        John Mark McDonald

      • I often remind our team that if my child is doing well with the services provided, it does not mean that his autism is gone, or that he is cured, but rather it is proof that what we are doing is working and that those services are needed and warranted. They are covering their own behinds. You have to be the one looking out for your child.

  26. Still reading all the comments and I think it’s wonderful that this community is reaching out to one another.

    I have something that I’d like some input on. I believe my son is “sensory-seeking”… please excuse me if I use terminology out of the correct context. I believe that I am also sort of sensory seeking because I am also sensitive to touch, but in a good way. I use it as another sense, like finding my way in the dark and being able to know exactly what I’m holding without looking. Superpowers? LOL… no. What I mean to say is that I have nurtured this sensitivity and use it to my advantage and view it as an asset and something to nurture and develop and not to downplay. I also have very good eye-hand coordination.

    My thing is this… I would like to do the same for my son, to somehow open that up for him. How can I do this? His sense of touch is not so sensitive that would overwhelm him… He loves to be touched and I’d like to show him the possibilities but don’t know how…. Are there books out there that can speak to this? Does anyone know what I’m talking about?

    Thanks.. Debbie

    • I wrote an article about sensory issues and autism for my local autism group (REACH for a difference of Abilene) that might have some of the information you are looking for. I’m looking for a place online to publish it, but haven’t found one so far. In the meantime, I would be glad to share it with you if you could send me a note at scintor@aol.com or on Facebook at http://www.facebook.com/Scintor . Sensory seeking and sensory overload are huge deals in my and my children’s life as well as many other people on the spectrum learning to identify what senses someone on the spectrum is sensitive to, both good and bad, can open up the world to them.

      John Mark McDonald

  27. Hi everyone,

    I’m a teacher and am working to get my Master’s in Applied Behavior Analysis. I’m currently writing a family perspectives paper and need to contact parents of children with Autism to better understand the needs of family members of children with Autism. What can schools or communities do to assist family members? What type of support aren’t family members getting that teachers can provide or at lest get you the information for?

    I would love any input! Please feel free to email me if you don’t want to reply to the comment at kmchri10@asu.edu.

    Thanks,

    Katie Christopher

  28. Does anyone have any suggestions of a method for teaching our son with Asberger’s how to spell? He is a phonetic speller and has been super frustrated with learning how to spell. Then again, he’s only 8 and maybe it’s not that important yet. I don’t know…thoughts?

    Also…any suggestions for ways to encourage him to practice writing? I’m out of ideas. It is something we really need to work on.

    Thanks!
    Kate

  29. This is mostly just a vent, but also looking for advice from anyone who has any to give…. son is 5, to be 6 in the fall. ASD/Asperger’s/SPD/ADHD. Lots of sensory issues, lots of anxiety, bit of OCD. Went through a horrible, horrible, did I mention “Horrible”?, biting phase from the age of 3 though turning 5 last fall. He finally stopped, and I thought we’d made progress. Yesterday it started again, seemingly out of the blue when he’d not bitten at all in about 9 months or so… and it’s almost like we’re right back where we were before all of the OT and the iLs and the play therapy and the behavior therapy and the floortime and the music therapy… color me at wits end… what to do? thoughts, ideas, input welcome. He’s to start Kindergarten in the fall and this won’t fly at his new school.

    • My son is in almost the same spot. But he is not facing a new school in the fall. We have had a lot of visitors to our home the last month and now we are facing the end of school for about three weeks. Thank goodness we will have school in July, but August will be no school again until after Labor Day. Is it possible your son in feeling anxiety about switching schools? A meet and greet or two before school starts might help relieve anxiety, if that is the issue.

  30. My little guy is 5 with PDD. A couple of days ago he thought it was a good idea to remove his pants and underwear after school on the playground.

    Full frontal nudity and 4or 5 older girls were sitting right there facing him.

    Yesterday after school a few kids were calling him Wee Wee Boy. Others laughing. The trouble is that he looks typical a lot of the time but does things that are totally socially unacceptable to kids (and saying non-sensical things), Breaks a mama’s heart to see them turn on him.

    • I would be asking his teacher to identify the older children and discuss with them privately the fact that he has PDD and therefore challenges and that they are in effect bullying him and appealing to their better selves, should stop. It might work. Kids can be cruel but if they can be made to understand why he is doing it, perhaps if they were designated to help him out, then they might stop and be his advocates in future.

    • I know this won’t help the kids on the playground, but my son’s Kindergarten teacher said the best thing a parent can do is go and talk to the class about who your child is and why they act the way they do. She said the year goes much better. When I did it I talked about the similarities, how he tries to do his best just like they do.. I brought in a scribbled picture and talked about how proud I was of him. The expressions on their face were priceless! I talked about what they like, what he likes that is the same and the things that are different. AND the fact that he has autism and Fragile X which makes him different… along with a few of the things he struggles with. (He has super hero senses.. his hearing for example!) I did this same talk for his Sunday School class when he was out. The next week a kid said, “you mom told me your secret.. you are a super hero!” BA HA.

      Of course the most important part is that they should never make fun of him or treat him mean. AND he learns by observing peers so they are often his teacher. I sent a note home to their parents just in case there were any conversations that could be had at home.

      At the end when I asked them what questions they had they were things like, “what is his favorite color?” Ahh… gotta love kids!

      As far as the older kids those comments would fall under bullying… which should be taken care of by the school.

  31. My daughter’s doctor (developmental pediatrician) recommended medication for the first time yesterday. My daughter is 3 1/2 years old. The doctor is recommending Risperdal. She only wants her to take it “as needed.” I am so nervous and sick about it. It would be to help control irritability, aggressive beahviors (toward herself and my husband and I) and mood swings. My daughter does have these struggles, but I don’t know if they are severe enough for medication. Other than the aggressive behavior, I don’t know if the other symptoms are worse than many typical 3 year olds. I’m torn. I do want to try something to see if it will help her, but I definitely want the option of stopping immediately if we don’t like how it affects her. The thought of giving my baby an “anti-psychotic” medication makes me squirm. We recently started the gfcf diet (about a week ago) for her and she is scheduled to start ABA in August. I am tempted to wait on the medicine until we see if these two things help. Has anyone tried this medicine for a child this young? Why do these decisions have to be so difficult?

    • Hi Amy-
      I have not tried any medications with my children, so I can’t speak to the pros and cons of the one your doctor is recommending, but I have learned that the very best thing you can do with any of these decisions is to follow your mommy gut. If you want to wait, then you should consider that as valid as any advice you receive from a professional. Also, it sounds like you are trying a bunch of stuff at once. Sometimes it helps to try just one thing at a time, so that if you see change (good or bad) you can attribute it to one thing instead of guessing at which therapy helped or hurt. This isn’t a sprint. It’s a marathon, so slow down and pace yourself a little. Take time to think things through, and most of all, trust your own instincts- you are the mom.

    • I have some friends with kids who have been given Risperdal and it certainly isn’t a “take as needed” medication, it has a long go on/come off period and has some fairly significant side effects although it can be very effective – these are older children. I agree with Erin, don’t try everything at once and given her age, I’d be trying behavioural interventions before medication as they can have considerable positive effects then if that doesn’t work or you need extra, then try the medication. Now this is just my opinion after I have watched other parents go down this route and when the behaviours after all other interventions haven’t been sufficient, then they have done medication but tried other things first.

  32. I am taking my son for the formal autism evaluation at the center for disabilities and development at U of Iowa on Monday. Nervous does not begin to describe it. It took us a full year to get this appointment. Anyone have any tips or suggestions for me? Apparently it will take about 5 hrs with one break. My son is 5 yrs old, ADHD (H), SPD (seeking), and likely Asperger’s/HFA, but no idea what will come out Monday. He can have spectacular meltdowns and can be very aggressive. I don’t know what to think or how or if we should even try to prepare for this… any advice appreciated.

    • Just take him just like he is. They are used to autistic behavior, and they want to see it. Just let him know that some doctors want some advice from him. :)

      John Mark McDonald

    • Try to have a mental (or even better written) list of behaviors that you find concerning or “different” and how often during a day he does them. They have all these fun questionairres for moms and dads to fill out, and it can be kind of overwhelming to try to recall details of an “average” day in that setting. For example, my daughter toe walks and flaps so much, that I simply don’t notice it too much, but it now (now that it’s been pointed out to me by the pros) gets checked off as “often”. It’s hard to be objective in quantifying something that you associate with your child’s personality. It never dawned on me as being different that my son wouldn’t let you change the tooic of a conversation, but the psychologist picked up on it right away.

      Most importantly, remember, whatever they tell you, you will leave that appointment with the same precious little boy you walked in with. You may just have a little more information and insight into who he is.

    • Thanks, your replies were helpful. Much to my surprise, he was on ‘best ever’ behavior today and he ended up with a diagnosis of PDD-NOS (along with the ADHD and SPD). The Dr doing the evaluation said he fit the diagnostic criteria for Asperger’s but didn’t display the severity she would normally expect to see for that, so she was giving him PDD-NOS. I am not sure that makes sense, but I’m not a Dr, I don’t suppose there is much I can do about it, and I suppose it doesn’t matter in the long run… does it?

      • It shouldn’t matter. He should qualify for assisted services, which is one of the main points of a diagnosis. The differences of Autism, Asperger’s Syndrome and PDD-NOS are often a matter of how well you are doing that day in my own experience. I would also urge you to remember that people on the spectrum are capable of amazing things like artistic and scientific achievement that no one else in the world can. He is a wonder on his own merit and with your support and some help from others, he will amaze you.

        John Mark McDonald

      • Thanks, John. We’ve been operating on an ‘as if’ basis for two years now, as every therapist we’ve seen was convinced he had “either Asperger’s or HFA” along with the other things. I denied it, argued at first, but it became clearer to me as he approached 5 years old.

        He is very bright, very inventive. He is teaching himself Japanese from Godzilla videos. He mostly taught himself to read, seemingly over night. He has a huge vocabulary which he uses mostly correctly (not entirely). There was no significant language delay when a period of physical deafness is taken into account. The big problems are social, non-verbal communication, and emotional (frustration tolerance/anger/aggression)/sensory.

        I know he has a chance to do amazing things. I know this. Yet, today, putting my signature on that line adding this diagnosis to his medical record, and hearing someone else say those words to me still felt like a kick in the gut, which I for some inexplicable reason was absolutely not expecting.

        So thank you again for your words of encouragement. They mean the world to me tonight.

      • Your quite welcome. I am both on the spectrum (Asperger’s) and have two kids on the spectrum. I get worried and annoyed by some groups that treat autism as a fate worse than death. There are plenty of successful adults out there on the spectrum, so there is no reason to lose heart because of a diagnosis. That’s not to say that everything will be sunshine and roses. There are going to be a lot of challenges and hard times, but it is also not time for sackcloth and ashes.

        John Mark McDonald

  33. What does a neuropsych do and when would they come into play? My son is 7 and was diagnosed PDD-NOS 2 years ago. Since then he has received OT, PT, and SLT (for communication skills) through the school system. He also attends an outside social skills group run by a psychotherapist, and outside OT when we can get insurance to agree to it. He is completely verbal and has some sensory issues. We only saw the developmental pediatrician for the diagnosis and our regular pediatrician is useless for autism. So I’ve been flying solo, and I’d like to get a professional co-pilot on board. Right now I pass some things through the psychotherapist, who is wonderful, but I’m wondering if a neuropsych should be a part of our team? Thanks.

  34. Okay, I’m out of ideas and would love any suggestions. My son is almost 5 and has had aggressive behaviors in the past – hitting and kicking mostly, but also biting occasionally. I was so happy about a year ago when he seemed to be controlling himself better and we weren’t seeing those behaviors. Then a few months ago, the aggressive behaviors started again worse than before. There are some clear triggers, one being when other children cry; he just loses it every time. However, sometimes there is no clear trigger for the agression. For example, today he was getting into his carpool for school and bit a girl for no apparent reason. We’ve tried everything we can think of: social stories, sticker charts, time-outs, Listerine on his tongue for biting. Nothing seems to help much or for very long. He does know that he’s not supposed to hurt people, and celebrates with us when he is able to cover his ears or walk away instead of hit/kick/bite. But sometimes it seems like he just can’t let go of something until he hurts someone. I’m so frustrated and out of ideas. Any suggestions?!?

    • Stacy, I had many of the same problems with my (now 5.5 yr old) son too. It was especially bad from the age of 2.5 – 5. We were desperate for solutions and it seemed that nothing was working. We also tried all of the things you mention, the charts, the punishments, the rewards, the encouragement. Every child is different and I can’t begin to say that what helped us will help your son, but in the end my son was most helped by three things: OT, iLs therapy, and ultimately guanfacine (he also has severe ADHD). Of the three, the guanfacine was the turning point, but by itself wasn’t the answer. We still deal with aggression, but not multiple times per day at school like in the past and not with the severity we used to see. The iLs and the OT seemed to help with the sensory issues which were underlying a lof of the aggressive episodes and I think the guanfacine helps a tiny bit with his impulse control. We also cleaned up his diet a lot, removing preservatives and food colorings and upping protein intake and limiting sugars… but I can’t say if that actually helped or not (I think it did, but no proof and ymmv). Wish I had more/better information to pass along…

  35. My 7 yo daughter has a PDD-NOS diagnosis and is currently taking Celexa for anxiety issues. Celexa has helped tremendously in her ability to sleep at night and in her own room, not sure how much it has helped with her overall anxiety levels, particularly in regards to school. Her pediatric neurologist now wants to start her on Intuniv to help with attention and focus. (She tends to drift off into her own world and has trouble concentrating at school.) Anybody have experience with Intuniv and care to share your story? My daughter is very high functioning, verbal, few emotional outbursts, and primarily struggles with extended concentration and social skills.

    • Suzanne, see my reply to Stacy just above your original post here. My son, 5 soon to be 6, diagnosed with ADHD and SPD and also just formally diagnosed PDD-NOS started on Intuniv in March. After a few weeks we switched him to the generic, guanfacine, b/c it is shorter acting and he had some troubles with getting too lethargic in the afternoons on the longer acting Intuniv (name brand). The switch did the trick. We no longer see the lethargy and we are also not seeing any notable side effects. He continues to take the short acting generic at 1mg 2x daily and it does seem to help — some, it’s no miracle cure — with the attention issues and for him also with impulse control and aggression. That said, I have not seen that it has helped in any other way with social issues for him… but it does seem to help with attention for him. Just our recent experience, but I hope it helps!

    • Oh, and, sorry, meant to add, we saw similar benefits on the Intuniv as we do on the guanfacine… but the lethargy wasn’t acceptable and did not go away after a few weeks as purported.

    • Be very careful. These classes of medication tend to work differently for each individual. Knowing how it worked on one person may not tell you how it will work for your daughter. If you try it, watch her carefully and ask her questions. It took me nearly 20 years to find a good balance of medications to help with some of my autistic symptoms with side effects I could tolerate. We are still tweaking those for my two children. Be patient, because there isn’t any other way forward besides trial and error.

      John Mark McDonald

  36. What a wonderful resource! It’s beautiful to see everyone banding together here in support of one another!
    I am mama to an amazing little girl, almost 3, who has the super powers of Asperger’s. We are blessed to live big with this sweet girl. Big joys and big sorrows.
    We’re having one of those days. The ones that creep up without warning and every reaction to every event of days past come pouring out of a tiny body at a speed like no other. The broken pieces of my heart shatter a little more on these days as I try everything I know to bring peace to my baby and it’s still not enough.
    This too shall pass and we will find peace again for a moment but what I’m hoping you can help me with is how you boost your spirit on these days? Where do you turn? What do you do to find hope and acceptance on these days? For me it’s an ongoing process but I’m in need of some new material.
    To be on point…we just settled a two hour meltdown. Her little body was filled with the stresses of celebrating the 4th. She’s sleeping peacefully now. I’m feeling sad and broken down as is typical after the storm. What would you do for yourself at this point to return to a positive attitude, to prepare yourself to tackle the rest of the day?

    • Oh honey, we all know this feeling. It hurts so much to watch your child struggle and heaven knows it’s exhausting for both of you.

      Use the time while she recharges to do the same – find a quiet space for yourself, take a quick bath, step outside and feel the sunshine on your face.

      Allow yourself the room that you need to recover your energy, just as she is while she sleeps.

      The positivity can be tough to find, but it’s in there. Hope is ALWAYS in there. And it does get better over time. Together, the two of you will both amass tools that will make these times less frequent – more avoidable.

      In the meantime, when time’s are hardest, I take comfort in Mary Anne Radmacher’s words –

      “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.”

      Hang in there. And remember to take care of YOU.

      Jess

  37. Jess, I want to thank you so much for writing this blog. I cannot express how much it has helped me the last few weeks as we try to move around this maze of IEPs, therapies, preschools, diagnoses, etc. There are days where I am not sure how I can do it. My husband is so optimistic and I am too but all the worries from Will he be bullied? to Will he ever have a friend? come streaming at me all at once. Luckily he is three and actually can speak so we are blessed to have that. And man, he is smart and funny to boot. Did I mention handsome? ;) In all seriousness, I just want to thank you for this. The last few days have been especially hard and I am become more and more worried about renting a house on the Cape with a group of friends. Although they understand, will they really when he has a freakout? I suppose I can take this all in stride and just enjoy each moment to its fullest and not dwell on the what ifs, and negatives. Just thanks.

    • tis fills my heart. and i know the worry and the fear and the what the hell do we do? you try.

      thank YOU.

      xo

  38. Hi Everyone. I know Jess has written a few times about Brooke and the repeating game she likes. I haven’t seen any other moms whose blogs I follow talk about the same thing but my son (who is 4 and just beginning to say a few words) does a similar thing. I’m wondering if it’s something that he will grow out of (I know no-one can answer that) or if there are any strategies that we might use to curb the frequency of it. He really gets bent out of shape and cries real tears if (for example) we are driving down the road and he sees a sculpture of a lion and then he says “lion” but we don’t repeat it. We usually indulge him but sometimes we just miss it or don’t understand the word that he’s saying so we can’t repeat it and he has a major meltdown. Any help/advice would be appreciated. Thanks.

    • Autistic kids have a hard time with social communication and connection, but this doesn’t mean that they do not crave it. This game is a form of social communication and connection for him, and therefore essential to him. He is trying desperately to share his world with you. My suggestion would be that rather than indulging him, that you join him. Engage with him in the game and slowly add rules that make things easier. Two rules I would add are that you get to point things out to him and he has to say them, and a “repeat rule” where he has to say the word again before you say it. This should be done at home where things don’t pass out of sight to get the new rules down before it is played in the car. I hope this is helpful to you.

      John Mark McDonald

    • My son used to be like yours with the meltdowns if we did not repeat what he said. In my opinion, it wasn’t functional for us to just repeat exactly what he said back to him, so we started to elaborate on what he said. For example, when your son says “lion” I would reply with, ” I see the lion. A lion roars really loud.” He got upset at first with us not repeating him exactly, but after a while he started to repeat more words that we said. So he would say “lion” and I would reply with “I see the lion. A lion roars really loud.” and he would say “Lion roars!” and giggle. It’s all about expanding the communication while giving him the reassurance that you understand what he’s saying. I’m no expert, this is just what has worked in my experience. Best of luck to you!

  39. Hi all — I haven’t posted here before but just lurking and reading has been helpful.
    Today, I mostly just need a spot to vent for a minute – but who knows, maybe there will be help out there too!
    My son N is 7 and seems to mostly be dealing with sensory processing issues. It was a heck of a year at school trying to deal with this new reality, but by the end of the school year I felt we were starting to get a handle on things.
    Then – he and his dad went to visit grandma for three weeks.

    I arrived today. Took an overnight train and crashed for a nap when I got in.

    Right now N and I are sitting on the floor of the local multiplex playing on our iPhones, while dad and aunt and grandma are inside watching Madagascar 3D. Why? Because apparently no one listened to me when I reminded them to ask him if he wanted to go. Or if he was okay with the 3D. (I thought they had, but I was asleep so I just trusted then to do it.) This is a kid who can’t handle noises; needs earplugs for even regular movies; and needs a lot of prep for that kind of outing. But no, they wanted to see this showing, so that’s that.
    So when we arrived he had a total meltdown. No surprise. Wouldn’t set foot in the theatre. And apparently dad had purged the earplugs I keep in the car. (why??)
    He’s fine now, curled up in my lap on the floor. And I don’t care about the wasted $ for the tickets, because it’s not my fault (and I really didn’t want to see this anyway!)
    But I’m not looking forward to dealing with grandma’s cluelessness when they get out; and I’m out of reason pissed at dad. Which I probably won’t express because it won’t make any difference.
    Ugh. Just, why? Why am I his only advocate, the only one who listens to him? This meltdown, today, didn’t have to happen. And I’m angry. For him.
    Not really expecting an answer…..but thanks for listening. :) I just needed to get it off my chest.

    • I’m sorry you are in that position! I’ve spent many a day huddled on the floor of a movie theater/shopping mall/front lawn of a birthday party… My heart goes out to you. I’m sorry his needs are falling on deaf ears around you. Stay strong – you’re doing what’s right for your boy.

    • Keep on keeping on Mom. I have found that it is hardest for those who don’t deal with it as much. My in-laws don’t have a clue as to how to deal, but after 5 years my mother-in-law will now ask questions.

  40. Anyone with advice on getting a 5 yr old sensory seeker to use the potty? He is perfectly content to sit in a wet or dirty pull up, unless he is painting. He is not severly affected.. he was briefly trained last year and now, not so much. I was hoping he would be out of his pull ups for kindergarten, but I just don\’t know.

    • I would suggest a set of rules with rewards. (e.g. children who use the potty right get a Popsicle. Children who have no accidents get to pick a movie to watch after dinner. Children who go for a week without an accident get a new movie or game.) It’s hard to do without threats or breaking the rules for your own convenience, but it can be effective.

      John Mark McDonald

    • Hi Jennifer-
      My daughter is five, just about to enter kindergarten, and we have had our share of potty training struggles too! We finally got her trained just about a month ago (Bribery finally worked! “I can’t afford to buy you that princess dress so long as I still have to buy you diapers….”) but it was way more than bribery. While she was in preschool her OT stumbled upon something called the “potty watch” (you can google it, it costs about $12). It is simple – you set the timer, and it goes off every 30,60 or 90 minutes. It lights up and plays a song, then resets itself. It gave her a measure of control over being responsible for remembering to go instead of us nagging her all the time. It did keep her mostly dry during school (until she started getting bored with it after three or four months). But it did help her lay the groundwork, so to speak. She started to understand the concept of going potty regularly a little better. The other kids in her class seemed to think it was just a neat toy watch…. I’ve also noticed that if she is wearing pull ups, she is more likely to use them. Her OT thinks she likes the feel of the wet diaper along with the extra weight on her waist. Underwear doesn’t seem to provide that as much (I know it’s a laundry risk, but actually seems to be working so far). Good luck. I totally understand your frustration.

      • This is also helpful for me. I don’t know when to begin potty training for my 3 year old who is finally to take her pants down, but many times will not let us know when she has soiled diaper,etc. I will look into the potty watch.

      • I think the website was pottytimeinc.com, if that helps. We are talking about starting to potty train my almost three year old. She is nonverbal, deaf, low-tone, etc. (we have three kids on the spectrum) but she is starting to leave the room when it’s time for her to “go.” We’re going to start with the potty watch, and see what happens. Anyone with any advice on potty-training someone with no expressive language, feel free to give me some advice– It took me three years to potty train the last one and she could talk!

  41. In light of the Joe Scarborough debacle, as Jess called it :) – I wrote a song about my baby… about our babies. I wanted to share it and wasn’t sure where to do that so this seemed like the best place. As Jess said, spread respect, love, understanding… that’s the purpose of this post… I appreciate having such a great community to reach out to… Heres’ the lyrics… followed by a link to vimeo…

    “As the mother of a child with Asperger’s (Dear Joe Scarborough)…”

    The way I feel right now
    I got a lot of things I can’t count on
    When I’m looking at my baby and he’s nowhere to be found
    And the world goes spinnin’
    Round and round…

    The way I feel right now
    I see a lot of evil can’t be changed
    I see a lot of egos can’t be tamed
    I see me runnin toward my baby
    And he’s runnin
    The other way…

    I know you’re scared
    I know you’re angry
    I know you just can’t face what you fear ’bout reality
    I know some days seem too big to be carried…

    And then my baby stares up at the sunlight shining
    And says: “Mama, I see those angels dancing…”
    He says: “Mama, do you see those angels dancing?”
    And I see… the light of an exquisite mind.

    The way I feel right now
    I got a lot of wishes I can’t make go away
    And I’m dreaming ’bout my baby
    And a day when he’ll be “okay”…
    And he’s sitting in that corner while the other children play…
    And the world’s spinnin’ faster every day…

    I know you’re scared
    I know you’re angry
    I know you just can’t face what you fear ’bout reality
    I know some days seem just too big to be carried…

    And then my baby’s blue eyes light up the winter sky
    And he touches my face but looks out at the world go by
    And he says: “Mama I see those snowflakes laughing.”
    He says: “Mama I see those snowflakes laughing.”
    And man I see those snowflakes…

    Man I see those snowflakes!

    And the way I feel right now
    With the light of this exquisite mind lightin’ up my inside
    That’s when I think that sometimes …
    That’s when I think that sometimes…
    Oh my baby I wish I was a little more like you…
    Oh my baby, I’d like to be a little bit more like you…

    As the Mother of a Child with Asperger’s (Dear Joe Scarborough)… from amanda moresco on Vimeo.

  42. Hi,
    I am new to this blog and so excited to be a part of the forum. My 3 year old daughter was diagnosed over a year ago. Every day is a challenge and new beginning. My daughter is the love of my life and my husbands. Recently she has been going through extreme behavioral changes.
    Pulling her shirt over her head
    Leaning over the couch
    Pulling her hair
    Major fits
    I do have help in addition to where she is in school full time (9-4) once a week in home by a psychologist. It is just so stressful and at times I feel overwhelmed.
    If you have any good tips or ideas, it would be appreciated. I also have a facebook page Autism-bridge.
    I am not giving up or put blame on my sweet daughter. I only want the best for her in life.

    Jill

    • JIll, My first instinct is to ask if she might be having GI / tummy trouble. The list of behaviors that you mention – pulling her shirt off, pulling her hair, but especially the leaning over the couch lead me to the question. When my girl’s got a tummy ache, the first thing she seeks is pressure to relieve it. If your little one’s in pain and doesn’t have the means to communicate it to you, the behaviors you describe would make a lot of sense.

      • Hi Jess,
        Is there a specialist I should go to for this? I will check with the psychologist as well to get her opinion. I have been learning how to use reinforcers (chips, crackers, ipad, ball toy, puzzles, bubbles,etc) and other strategies to help when her behavior is difficult.

        Thanks for your help.
        Jill

      • Yes, a pediatric gastroenterologist (GI specialist) – preferably one with experience with autism if possible.

        And the reinforcers are one thing, but I find that it’s VERY important to figure out WHAT Brooke is communicating with her behavior before trying to alter it. If a child is in pain – whether from sensory over- or under- stimulation or GI distress or anxiety or myriad other factors, a cookie may change the way that they express that pain, but it doesn’t get any closer to alleviating it.

    • One of the most important things to learn about in order to understand anyone on the spectrum is sensory issues. People on the spectrum really experience the world differently because our senses are set at a different level than the average person. These may be extremely high or extremely low. I wrote an article here http://autismtothefourth.blogspot.com/2012/06/sensory-issues-in-autism.html in which I go into detail about sensory issues.
      Also, at your daughter’s age, it is very difficult to tell a meltdown from a tantrum, but this is a very important difference. Meltdown are caused be becoming overloaded (either emotionally or by sensory overload) and become involuntary once started. Tantrums can be dealt with by rules and consequences, but meltdowns have to be dealt with by removing her from the things that are overloading her and getting her where she can recover. I would also suggest visiting some adult autism self-advocate sites, as I have found they have much better and more practical advice than sites of “autism experts” who have not lived through a lifetime with autism.
      John Mark McDonald

  43. I’d love to find more resources and support for kiddos that are nonverbal. Our 4-yr son is nonverbal and has a Vantage Lite communication device. This year he has taken more ownership of this talker and able to make more requests. However, I know he has more to share and I’m trying to find more support for him but also our family including his brothers. Thanks.

  44. John Mark McDonald, I always find your responses so very helpful and easy to understand. Thank you for contributing and helping out here. :)

  45. Does anyone know good stories or social stories about gettInv braces? My 9 yo daughter with ASD is about to start that process and could use some stories to guide her.

    • oi, i have no advice but i’m waiting to see what is posted. my 10 year old will need braces soon and my gut knots up anytime i think about it.

  46. Hi Jess and everyone!
    I hate to bug you on a holiday weekend, but I could use a teensy favor. You know your friend at Luck to Tuck? I have a friend like that too. I mentioned her to you in a comment on Welcome to the Club when you were on your island getaway last winter. Anyway, her son has been fighting neuroblastoma for seven years. He is 11 now, and his little brother is good friends with my son. One thing that means SO much to her is the gold ribbon for Childhood Cancer Awareness month – which just so happens to be September. Since you have such a huge stage, of skilled autism mamas who are great at spreading awareness and advocating, I was hoping you might just give it a mention somehow. It would make a world of difference to these families- just to have another group of parents take up there cause, just a little.

    Here’s a little something I wrote earlier today, for a little background – statistics, etc. I know you’re busy, but just thought it wouldn’t hurt too much to ask. Thanks.

    http://threepuzzlepieces.wordpress.com/2012/09/02/light-it-up-gold/

    Erin

    • Hi Erin,

      Thank you for sharing this story about your friend. This is another topic near and dear to my family. A dear childhood friend lost her 4 year old daughter 2 years ago to neuroblastoma. I would be happy to help spread the news. Thank you for letting us know.

      My husband is the manager of a restaurant where we live and this Thursday they are donating 10% of their proceeds from the ENTIRE DAY to St. Jude’s. I’m so proud of him for initiating this and seeing it through!

      Blessings,

      Kate (Mamabear99)

  47. I was wondering if anyone else has their child on Risperdal? My daughter, who is 8, started displaying SIB of biting her hands, wrists, and arms when she got upset or frustrated. Our developmental pediatrician prescribed Risperdal .25ml once a day. The medicine has worked wonders for her and the biting has almost completely stopped; maybe one or two bites a day. But now I’m noticing that her chest has started to sprout, and she is developing breasts. Does anyone know if this is a side affect? I’ve googled and have looked at the paperwork the doctor gave me; but I don’t see anything about this. Thanks in advance for your questions or comments~Amber

    • Found this on from the FDA indicating that in some studies hyperprolactinemia is a side effect of risperidone (Risperdal). http://www.fda.gov/ohrms/dockets/ac/08/slides/2008-4399s1-04%20(Risperidone).pdf
      Your daughter may have an excess of prolactin (same hormone that in high enough doses brings on lactation) activating breast growth/development while not actually bringing on puberty. I would discuss this possibility with your developmental pediatrician, they should be able to determine this with a blood test.

  48. Hi there. Looking for good books to use as support in discussing autism/Aspergers with my 8 year old son. Thanks so much for any recommendations!

    • l agree with “All Cats have Aspergers”. Also, “What it is to be me: An Asperger Kid book.
      We just recently told our 8 year old that he is autistic and has Aspergers. We spent time reading both of those books with him. He seemed to like both books.

      Kate

  49. I am in need of some ideas on how to handle a sudden, drastic, downward spiral. My 5 yr old son (soon to be 6, just started Kindergarten, officially PDD-NOS, but really more like mild Asperger’s, ADHD, SPD) had been doing fairly well in recent weeks.

    Suddenly, seemingly out of the blue two days ago it was like someone flipped a switch. Every tiny little thing is sending him into severe and immediate meltdown mode. He is suddenly perceiving slights where there are none and getting complete and totally out of control and is suddenly RIGHT on that very knife edge every minute of every day. It was so horrible yesterday morning that I didn’t think I could possibly send him to school and contemplated taking him to the hospital though I wasn’t sure what would happen if I did (so I didn’t).

    Things as simple as me asking what he wants for breakfast, him not deciding, and his father, joking, saying something like “Why don’t you have a can of sardines!” (they had just watched Cloudy with a Chance of Meatballs, where sardines are all the people have to eat before the machine is invented and of course no one liked them)… sends him into uncontrollable fits and screaming “YOU HATE ME! YOU’RE MAKING FUN OF ME!” If he sees or hears someone laughing he thinks that somehow they are laughing at HIM even if they have not interacted with him at all and aren’t looking at him, and are clear across the playground etc. He suddenly thinks everything that anyone does is directly related to him personally.

    This is a huge and drastic and sudden change and I can not find rhyme or reason for it.

    He is on guanfacine, 1.5mg 2x daily. He takes fish oil and a daily vitamin. We occasionally use melatonin, but haven’t in a long while. He sees a play therapist, a music/ floor time therapist, is starting ABA Social Skills therapy tonight, is on a waiting list for ABA therapy, and spent 1.5 years in OT though we’re on a break from that right now due to insurance red tape and “lack of therapeutic progress” or something.

    Have you ever experienced this? What do you do in this situation? Who do you call? Where do you start? I’m at a loss….

  50. I am sorry you are having such a tough time, and yes, we have experienced this too. My older son goes through periods like this, often when something has happened at school- either someone has picked on him, or he has perceived that they have picked on him. It often takes a while to drag it out of him. The other times I have noticed it has been when he gets MSG (listed on ingredients lists as monosodium glutamate). It is in all those prepackaged snacks that kids love to take to school with them – doritos, cheese puffs, vegetable dips, etc. it took me a while to catch on to it, but wow, what a difference it makes in him. We’ve found that Red dye #40 also affects him, but in a different (also not good) way. Kids are often eating different things at school than they are during the summer. It could also be just settling into the big transition of the school schedule. Usually the first couple weeks are kind of a getting to know you period, and then the real work starts – this could be like a separate transition for him. Talk to the teacher, the lunch lady and any other “spies” you may have at school to see if anything is up. Then try to keep your routine at home as tame as you can. Take a deep breath and just try to keep your cool through the storms – they will pass. I can’t comment on the medication, as my kids don’t take any, but I would try to keep everything – meal times, bedtimes, any other family routines and vitamins, as consistent as possible during a transition like starting school. Keep your chin up.

    • Thanks, Erin. We’ve already eliminated most/all food coloring (he especially reacts to red and yellow), preservatives of most types, and really severely limit processed foods of all sorts and he gets no junk foods like chips etc. He packs his lunch most days, but has had a few school lunches, so you may be on to something there. I’ve not looked for MSG, but I will now, thanks.

  51. I should probably also mention that he has started throwing himself on the floor, thrashing around insanely, playing helpless for no apparent reason, and yelling things like “I can’t stand up! I don’t have any hands!” and other really bizarre things… I have never, ever seen him act like this…

    • Mine do that too. The weird thing is (I have 3 on the spectrum ages 8, 5, and almost 3), it seems like when they hit age 5, everything just kind of blows up – becomes way more obvious. I have no idea why, but it did with my son, and it’s now happening with my 5 year old (kindergarten too!) daughter… I have learned to just stand back as much as possible (so long as they are safe). Whenever I engaged my son in that way, it would just amplify the meltdown. It is NOT easy. Often these “tantrums” go on for upwards of an hour. I try to get them to a quiet cooling off place, like their room, or the car if we’re out. It often involves me carrying them (autism is like a great gym sometimes.;) ). Don’t worry about what anyone else is thinking at that point. The more intense he gets, the more calm and matter of fact you need to be. Over time, you will help hime learn coping skills to calm himself. When the event is over, and you have had time to separate from the episode., talk to him about it. There is no point in trying when he is thrashing. It WILL get better. Right now it just feels like you are running a marathon at a sprinter’s pace, but it will get better. I equate it to an asthma attack – when I have one asthma attack, for the rest of the day, my lungs are a bit more sensitive, and smaller things will set off another attack. For my kids the meltdowns are the same way, so keep that in mind for after it happens too. I have even explained that to my son (after he calms). Him being aware of that seems to help him.

      • Thank you, Erin… I so needed to hear that right now…. I was beginning to fear he was having some sort of psychotic break or something. I will attack it with calm and persistence and we will see how it goes. Thank you again!

  52. Oh gosh, I remember worrying that my little guy was having a psychotic break in Kindergarten too. For my little guy it was anxiety that was driving the crazy thinking. The school behaviorist working with him an hour a week, and a very gentle treatment from the teacher worked wonders.

  53. Can anyone suggest ideas for how I can prepare for my daughters IEP meeting? She will be 4 yes old end of December and about to change from a private Aba therapy full time program the I loved and saved her life.
    She is transferring schools in two weeks where she will go to a public charter school for autistic kids.
    This is all new to me and would appreciate any advice. I know in time through experience things will get easier, atleast I hope.
    The IEP meeting is supposed to be 3 weeks from when she starts October 1.
    Thanks for the support!
    Feedback is appreciated.

    • I actually don’t have a lot of experience with IEPs since my older two go to private school, but we just had our first IEP for my youngest yesterday. It would probably be helpful if you could talk to her team at her former school. Perhaps they may have some ideas of goals for you. Also, old treatment plans and evealuations might be helpful. One thing that we put into ours was an observation period for the PT and OT at the school to watch my daughter and evaluate her over 30 days and then come up with a treatment plan and goals that will be added into her IEP. We are sending our daughter to an approved private school, so they are very good at writing IEPs that protect the kids. My assumption is that if she is going to a specialized school, they may be less adversarial than a “mainstream” school, but that’s just a guess. Go in with your ideas. Listen to theirs. Then take the draft home and look it over before you sign it. Make sure the goals are not too vague. I’m pretty sure you can bring whoever you want as well, so it might be helpful to bring some of her current teachers or therapists if you can. (I brought three with me.) At least bring one other person you trust for moral support, if nothing else. Look through the comments here too, I think there has been some good (way better than mine!) advice given in the past on this. Good luck!!

  54. Hi there. The best advice I’ve ever gotten from an advocate friend of mine is to be nice and never say what you “want’ for your child. Never say, what I want for my child is… – Politely say: what my child needs is blank – how can you provide this to her/him? – sometimes language makes all the difference. Also, it empowered me to realize that I am not asking for favors for them to help me – they are required to provide the help my child needs and me “advocating” for him – literally means I am speaking for him. Not asking for favors.

    Of course, this requires that you know what it is your child needs at this point, going into this new school and that can sometimes be the most scary thing. Hopefully you have at least an idea of some supports that help her already, some supports you would like to try and if not, then I would go with what they suggest and if you don’t see any progress or if anything they’re suggesting is detrimental – then you have the right to request another meeting at any time during the year to reevaluate.

    I remember my first iep – i was terrified, it was very scary and the people on the other side of the table knew how new I was to the whole process and quite honestly, counted on me to not make waves, to not ask questions…

    Hopefully you have/will have a great team and they really will be doing everything they can for your child – but if you don’t understand something they’re saying, an acronym they’re using – anything at all – it is your right to understand them. And not be intimidated.

    It’s a great thing to ask questions – if the team is annoyed by your asking or you get the feeling in any way at all that they are burdened by what you’re asking for – then that’s a great red flag and you know you need to keep your eyes open and might possibly have to look into getting an advocate on your side.

    I sincerely hope it doesn’t come to that for you – It’s just good to know that there are options out there should you need them.

    I hope it goes well!

  55. “One thing that we put into ours was an observation period for the PT and OT at the school to watch my daughter and evaluate her over 30 days and then come up with a treatment plan and goals that will be added into her IEP”

    Wow, great advice – especially if this is a totally new environment for her and you’re not really sure how she’s going to respond.

  56. Thank you for the response. I feel like there is so much to know, but with communication and the appropriate support I will feel in contol of getting what my daughter needs. I will keep what you suggested in mind.

    • Bring snacks! The team at your school are working hard. These meetings tend to be emotional and difficult and they have numerous meetings to attend, though you are only there for one. We always bring coffee and pastries to show appreciation for the team working with our child and because it improves everyone’s mood.

  57. Hey! My friend just had her daughter re-evaluated. Her DD is middle-school, on autism spectrum and ADHD. She is feeling lost because so many bloggers have boys or younger girls. Anyone have a similar situation To hers? Also, any recs for literature for a mom with a daughter on the spectrum??

  58. Today was such a great day, but also at very stressful. My daughter who I adore, many times for attention will take off her clothes, lean over the couch or even bend back on the booster.
    What are some proactive suggestions?
    I was recently trained with a psychologist, but any support and feedback that has worked is appreciated.
    Thanks so much
    Jill

    • Please be careful before you decide that her behavior is attention seeking. Many behaviors that seem like attention seeking in people on the spectrum are actually reactions to sensory issues or emotional overload. I have both a boy and a girl on the spectrum and have Asperger’s myself. I cannot tell you the number of times I or my children were accused of attention seeking when actually is was sensory issues or emotional overload. On the other hand, like any child, your daughter will do things to get your attention.

      What caught my attention was your mention of of her specific behaviors. Autistic children who take off their clothes is a classic indication of over sensitivity to touch. My 13 year old son to this day prefers to wear his shirts inside out because the feeling of the seems and tags are a constant source of irritation to him. The bending over a couch or the booster chair may a need for stimulation of the sense of balance or deep muscle pressure. I wrote an article on sensory issues that can be found here:

      http://autismtothefourth.blogspot.com/2012/06/sensory-issues-in-autism.html

      Without knowing more about the situation, I really can’t say more. I am available anytime to talk about this or any other autism issue.

      John Mark McDonald

      Scintor@aol.com

  59. Tonight was very upsetting and stressful. My autistic daughter who is almost 4, is truly the love of my life. However, even with unconditional love a mom can have her moments of inner meltdowns. When Zoey starts doing things to act out like very wild at the dinner table, or running to couch where she will lean over, I know it’s either for attention or very overtired.

    What happened that upset me was after her bath, Zoey was determined to bring the mini trampoline downstairs. Well, I have to walk or carry her down stairs since she is not able to on her own. She wanted the trampoline down at that moment. I took her down stair and than planned to bring the trampoline down once I got Zoey safely in the living room. The next things I feel for the first time was my hair being pulled by Zoey while she giggled and thought this was funny. As I tried to pull her hands off my hair, I began to raise my voice which only pushed her to pull my hair more. My husband luckily was home and able to assist.

    In addition, after I was more calm and felt bad that the situation got so escalated, I went over to my daughter for a hug and kiss. I felt bad as being autistic and I know 3 yr old children do these things, it was still hard to handle. My daughter also bit me on the leg before taking her up to bed. It seemed like her behavior was just getting worse from being tired.

    If anyone has had this situation occur as I am sure it is not so uncommon, please suggest some proactive strategies. The most important action I will need to do, will be to stay as calm as I can and know this is not my daughters fault. “Calgon take me away.” (If you remember those commercials where the mom is in the bathtub)

    • All I can tell you is, it happens. Kids get tired, mamas get tired. We all raise our voices at some point. My kids do that too. It is frustrating. It is so hard to calm yourself at the same time as your child is escalating. I keep my hair pulled up at all times, to avoid the hair pulling. I don’t wear jewelry. It helps. But it happens to all of us. She will be ok. You will both be ok. Get some sleep. It will really feel better in the morning. Really. It will. Don’t beat yourself up. Hugs.

  60. My autistic son just told me this morning that one kid punches him in the stomach everyday at school. Should I get the teachers and admin, etc., involved or wait and see? Shoot! I’m so sad and mad. Why does my sweet, sweet boy have to go to school every day knowing he’s getting punched by a schoolmate? Ugh!!

  61. I have three boys – my 7 and 5 year old are on the spectrum, my 2 year old is not. While our community has some great resources, our public schools are terrible at educating children with special needs, and private school for two is slowly bankrupting us (and not always giving the kids the access to the typical peers they need). My husband and I would like to move to another community (really anywhere in the US) that has great public schools and other therapeutic, social, and play opportunities. We have begun thinking about the Greater Boston area but are wide open to any other thoughts anyone might have. Thanks in advance for your help!

    • PA is great for funding services (despite what is currently going on – see comment below). With a diagnosis, regardless of income, children qualify for Medicaid and are eligible for wraparound services (at no cost unless our current governor gets his way) – behavioral aids come to school and home with your child, as prescribed. Also, housing is much cheaper here. I grew up in Boston, but I live here now for the services that my kids get. Good luck!

    • Hi Jodi-
      Go to pennautism.org. Basically it’s a big mess right now, but there was a House Resolution just this morning to try to at least postpone implementation until the finance committee can look into it. Governor Corbett has decided to go it alone on this and somehow managed to get sweeping authority to do so. Contact your legislators. Tell them to support HR 879. I’ve also started a petition that you can add your name to, and please pass it on to anyone else who might be willing to sign. We can stop this, but we all have to work together.

      For those who don’t know about this, the Governor is essentially implementing a tax on disabled children in PA. The services that are currently covered will be subject to copays, up to 5% of a family’s gross income. Families were notified this week. A bulletin was announced August 10, but quietly, so only a few of us knew about it. Few members of ghe general public are even aware of it right now. And it is set to take effect on Monday for newly diagnosed families, November 1 for families already in the system. It will certainly mean that parents will be forced to cut many prescribed and medically necessary therapies and treatments in order to provide food and shelter for the rest of their family. If this goes into effect, it will be disastrous for many families. Please sign the petition at the link below.

      http://www.change.org/petitions/the-governor-of-pa-do-not-implement-copays-on-services-for-disabled-children

  62. thanks for the info. i know a lot of families who are very anxious about this legislation. it’s not so much the idea of having to contribute to the cost of care but the complete chaos and disorganization of it is awful.

    • I completely agree. i’m not necessarily opposed to contributing, but the way it’s being handled is cruel, unorganized, specifically targets autistic children, and they are being extremely vague about how it will be implemented. The reality is, if they would simply enforce the Act 62 Insurance laws already on the books by forcing insurance companies to cover autism services, they would save significantly more money, and actually help families. Just keep yourself informed – it seems things are changing by the minute on this…

    • Hi Jodi-
      Just wanted to update you, in case you hadn’t heard: the copayment idea has been shelved. It was announced today after a massive joint effort by the advocates and families of disabled children in PA. A huge victory for our community, won today because we all worked together for our children. We will continue to keep an eye on the situation, but for now – huge sigh of relief. :) Happy Friday to you!

  63. Posting from Canada but needed to get this story out to “my community” for added support and to share this BEAUTIFUL song written for Noah Jacobsen. I think it speaks volumes to many of us on this journey. Noah tragically lost his father and proceeds from this song will go to fund Noah’s continued therapies and support. Listen to the lyrics and send your positive thoughts and support to this family. Our family.

    http://dearrouge.bandcamp.com/

    PS: I have never met and do not know this family personally but read the story in a local newspaper and wanted to pass it along to others.

  64. Yours was the first blog I was directed to after our son was diagnosed with autism just this week. A new world is upon me and I decided to start my own blog for him. It’s called Jacob’s Voice on blogger. I’m new to this so I have no idea how to reach out and become a part of this community so I decided to start with you since you seem to be on of the cornerstones. Please feel free to offer any suggestions or help you see fit. Thank you – Dan

    • Dan,

      Welcome! I’d invite you to read the following two posts, Welcome to the Club ..

      http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

      And D Day …

      http://adiaryofamom.wordpress.com/2012/03/28/d-day/

      both of which I often share with parents of newly diagnosed kids. I’d also suggest scrolling through my blog roll where you will find other dads who write, a bunch of moms, and most importantly, links to autistic perspectives.

      If you’d like to join us on the Facebook page, there are some lively conversations there as well. You can check out the pages that I like from there – Thautcast, ASAN, Autism Speaks — lots of different perspectives.

      But as it says in Welcome to the Club, don’t feel like you have to do it all at once. It’s a lot and it can be confusing and overwhelming. The information and the conversations aren’t going anywhere. Take your time and jump in as you’re ready. We all look forward to having you. ;)

      Jess

  65. thanks. i had heard about that and i’m curious about the proposed idea of a premium. at least for the time being, people can continue to have services for their kids

  66. I am really struggling with what to do for my son for kindergarten. My 4 1/2 year old son was diagnosed with autism two years ago. He has been in early intervention (speech, OT, PT, music, ABA) ever since. He has also been attending a developmental preschool since he turned 3. The school district wants to send him to their autism program, and pull him out for some subjects. He has been reading, writing and spelling since he was 3. He is also doing some math. My concern is that he will stay in the autism classroom most of the day, and will not get enough academics. Or will not gain the social skills of typical peers.
    We could also send him to a private Montessori school. M’s OT and BCBA therapists have recommended Montessori schools. But his pediatrician and his developmental psychologist have both said Montessori schools foster too much independence, which M has “enough of” and that he “needs to learn socialization” which the schools do not work on.
    So, mainstreaming is the third option. But, I worry that it will be overwhelming for him. Even with an aide.
    Any advice would be so appreciated. Thanks so much.

    • wow, that is so complicated. i struggle with keeping a balance between academics and socialization, also. what i’ve done is just gone with what he needs today. if he’s lacking more in social skills than academics, i kept him in mainstream. once his academics started to suffer (too much visual stimulation, noise, and intolerance in mainstream class to concentrate), i moved him to a situation where learning was easier. this isn’t a month by month change, as that would be upsetting for him. i had to concern myself with the fact that this journey will take decades and all i can do is make the best decision for him right now. for today.

      in your mother’s gut, maybe you have an inclination as to what he needs, to say maybe your heart is already leaning toward one option. if so, i’d suggest taking that route. two different sources are giving you information. two sources with different goals. look at the motives of the source (the school districts vs the therapists). which one is truly trying to give the best life to your child? and if you can honestly say that they both are, then i really feel like either way you move will be okay. they both have their data backing their suggestions. neither way will be detrimental, i’m sure.

      good luck with your situation. i hope you find confidence in your decision. :)

      • Thank you Luna, for your advice. I think that you are right, and we will just have to explore all the options sinc I keep going back and forth. We are touring schools on Monday and I hope to have a better picture. :) and, like you said no decision is final.

  67. We are having some difficulties with my 3 yr old (4 end of December)
    We recently moved for a trial relocation where my daughter is in a new public charter school for autism. Yesterday something amazing happened, my daughter said “stay daddy”, she had never said this. There was also very intesive fits where she tried biting her arm, pulled another childs hair and screamed wanting her way. I am in the process of getting addition behavioral therapists to help me and her. In addition, I am so concerned this will get worse and maybe looking into medicine to help. I prefer not to, but might be necessary as she was doing this before our move. If anyone can make a suggestion as I am trying to be strong and keep it together. It’s also hard as I lost my mother to cancer Feb 2011 and wish I could get the right support.

    • I wish I had some advice, but I do not. I understand your dilemma regarding medication. I’m also not a fan of it, but when they’re hurting other people it gets so very complicated. Are you located near any support resources? Nothing can replace a parent, of course, but having people around you who get it is so important.

    • Jill- I am sorry you are going through this. Would it be possible to cut back on your daughter’s schedule? Perhaps a half day if she is in full day classes, or less days per week? My three year old had some pretty serious regressions when we had increased her therapy time. When we cut back a little, and maintained focus on just a few areas where she was doing well (as opposed to working her too hard on things she wasn’t having success at) we saw overall improvements everywhere. I see that you said she was doing this before your move, but perhaps something new is contributing to it now? {{Hugs}}

  68. I am not sure if I am posting this for advice or just for the community support. Perhaps a little of both. I have two Aspie daughters; the older of the girls is fifteen, but only in 8th grade. We have been moving steadily along, since her diagnosis several months ago. (Why it took us so long to put the pieces together is another story entirely.) What matters is that we finally knew the root cause of all the different issues, and we were working together as a family, partnered with the school and therapists, to help her make positive changes. She struggles desperately with anxiety, and she actually has a dual-diagnosis of Asperger’s with General Anxiety Disorder. But, for the most part, she tries to be a typical kid, and she wants to do typical-kid activities. So, she went to her Homecoming dance Friday night…not with a date, of course. That would be far outside of her comfort zone. She went hoping to hang out with friends, but none of them showed up. So, she mostly hung out with her younger brother and his girlfriend. Unfortuantely, she was targeted by an aggressive young man who verbally and physically assualted her on three separate occasions. She was very frightened, and she asked an adult to help after the first attack. But, they did nothing. She did tell her brother, but while his back was turned, the second attack occurred. The third time, her brother was watching and waiting. Although he is three years younger than his sister, and has the soul of Winnie the Pooh, he stepped in front of his sister and protected her. He had to physically defend her. Again, no adult did anything until my son demanded help. By then, I was on my way to the school, and I arrived to the scene of disaster. All of this occurred during a very short span of time. Unfortunately, there were no school authorities at the dance, only parents. The attacker was basically free to do as he pleased, and he remained at the dance. OF COURSE, we are dealing with this officially first thing this morning, both with the school and with the police. However, the damage has been done. My daughter was already struggling with the temptation to cut. We had managed to hold it at bay by replacing the urges with expressing her feelings in art. But, this was too much. Friday night was a triggering event, and she confessed yesterday that she really cut herself this time. I was already numb and in shock from Friday night, and it really didn’t hit me until last night. Suddenly, a wave of grief and rage rolled over me like a freight train. I could hardly breathe, I was sobbing so hard. I am not looking forward to this day. I feel physically sick. There is really nothing any of you can do. I know the things we need to do, legally and emotionally. But, I guess I just need the support of the community, to know that I am not alone in my grief and rage. I feel powerless. I can do something about the enemy attacking my daughter from the outside. I can do very little about the enemy attacking her from the inside. It is the most frightened I have ever been as a parent. I will try to post updates and results later. Thanks for listening.

    • That’s terrible. I had a child in my care that cut herself when she was a teen. We set up counselors, etc, but it’s so very difficult to reach them. It’s not something you can fix with some medicine and a band-aid. Frightening is a good word for that situation. I hope you manage to keep her moving toward artistic expression.

    • Before I say anything, I want to let you know where I am coming from. I am a middle aged man with Asperger’s who has two children on the spectrum.

      Where to begin as there are so many overlapping issues here. OK, we’ll start with self care.

      DO NOT BLAME YOURSELF! You did nothing wrong here. You sent your daughter to a place that should have been safe because it was monitored with friends and familiar people. It was other people not doing what they should have that caused this. Your daughter is probably not the only one who is internalizing their emotions in a hurtful way. Life is unpredictable, and torturing yourself with “if only’s” will only make things worse. Forgive yourself for not being all knowing and leave the past behind so that you can make the future better.

      OK next is your daughter.

      Your going to have to trust on this one because it will never make sense emotionally. Cutting in this case is an extreme form of stimming and like all forms of self-injurious stimming is terrifying to those who watch those in their care doing so. Stimming is a NORMAL human response to being overwhelmed by emotions or sensations. Because people on the spectrum are more sensitive to them than neuro-typical people, we get overwhelmed more easily. The situation that your daughter would overwhelm ANY teenage girl.
      Now the best thing to realize here, is that the stimm is not the problem, but a symptom. Does that mean we leave it alone as some advocate? No, but we should try to never punish or demonize it. Stimming in response to being overwhelmed is normal and many times unavoidable, but the way we stimm can be shaped with practice, You are already on the right path with providing alternate outlets for her energy.
      The first step is understanding in a way that she feels accepted, and this is where it gets even more complicated. Stimming is only semi-voluntary, like breathing. If you think about it, you can control the rhythm and timing of your breathing, but as soon as you stop paying attention, it does it on its own. Her cutting was not an isolated act of self injury, but part of the entire episode that was still going on inside her. She knows that she is supposed to cut and probably feels guilty that she was not “strong enough” to keep from doing so and feels like she has let you down.
      The best thing I can recommend here is to let her know how overwhelmed, scared, angry, sad and disappointed she is at how the prom went. Don’t even mention the cutting, but deal with what caused it. She knows that she isn’t supposed to cut and doesn’t want to do it, if for no other reason than she doesn’t want to disappoint you. She was not trying to hurt herself; she was just trying to deal with that much overwhelming emotion. Let her know that she is loved and valued and that she didn’t do anything wrong that night. If she brings up the cutting, the best thing to say is something like, “I know that what happened would be too much for anyone to deal with, but you’re going to make it because I am right here with you.” Dealing with the possibility of her cutting again is something for a later time when her wounds are not so fresh.

      (continued)

    • As for your son; he needs to be praised for being enough of a man to stand up for her against her aggressor and the indifferent adults that were supposed to be taking care of things. He deserves a lot of credit and hopefully it won’t go to his head.

      OK next for the people who were running the prom. This is the sort of thing where you need to demand a written apology from the people in charge of the dance. If it was the school, it needs to come from the principal and the staff and/or teacher that organized it. If it was the PTA, then it needs to come from the president and the person in charge of the event. The point of this is to is to make them realize the magnitude of the problem and motivate them to make the changes necessary to keep it from happening again instead of just quietly sweeping it under the rug. It also needs to be brought up at the next meeting of the people in charge (i.e. PTA meeting or School board meeting.) Don’t do so alone. Take with you the most opinionated, in your face person that never backs down from anything person that loves your daughter. If this is you, bring you most vocal supportive friends, but DO NOT bring your daughter. Boards tend to attract social bullies who will use social tricks to put pressure on her to accept the easiest solution for them rather than what is right. Going after the actual individuals at the prom will probably not be effective and may in fact cause them to “circle the wagons” rather than deal with the problem.

      (cont.)

    • Last for the perpetrator. Whether or not you press charges is up to you, but GET A RESTRAINING ORDER! Make sure it is a no contact, no intermediaries, no nonsense restraining order with teeth. Make sure the judge is aware that you daughter is part of a federally protected, especially vulnerable disabled group. It is so easy for teenagers to ignore the rules and just do what he likes and what impresses his friends and he gets away with it because of the “don’t involve the adults” unwritten rule that teenagers have. This is very important because it will be the only protection she has at school when you are not there. A clear judges order cuts through all the normal levels of social expectations that protect a perpetrator from the consequences of his actions.

      John Mark McDonald
      Scintor@aol.com

      P.S. I am available to discuss this anytime by e-mail or phone. I can also help with the cutting issue when the time comes.

  69. I need help. I have 7-year-old triplet boys-two are neurotypical and one Asperger’s with other associated issues. The boys asked me about “curing” Autism. My husband and I have explained, to the best of our abilities, that Autism isn’t something you cure, it’s sort of someone you are. Anyone ever have that situation with siblings? What have you done? I have already put in a call to an autism group.

    • It’s such a tough position. My oldest is 10 and HFA. My two younger children are NT. My 8 year old asked the same question. I explained that he was born with an autistic brain. That everyone had different color hair, skin, eyes, etc. That brains can be different, too, we just can’t see it immediately. There are funny brains, brilliant brains, anxious brains, mechanically-inclined brains, artistic brains and autistic brains. I told her that I realized that some of the accommodations we make for him are frustrating. I asked her if her brother ever got frustrated with her, to which she said yes. I told her that we’re all very different personalities and that I wouldn’t try and ‘fix’ her because she was frustrating, and that our differences are important. Not always easy, but so very important. I told her that if there was a cure, I’m not sure I’d give it to him. He was created how he is and just because he’s different from me doesn’t make him wrong. And that doesn’t change no matter how many people he’s different from. I told her that if he wanted a medicine that would make certain tasks easier, then I’d help him. But never fix him. Because he’s not broken.

      Your explanation would be different if you believe HFA and Asperger Syndrome needs to be cured, of course. My explanation would have been drastically different if my son’s autism was severe, if he harmed himself or others physically, etc. But for now, for her age, for our situation, i felt like the above was enough. It’s an ongoing conversation and it probably always will be. It’s tough for siblings. I’ve read that multiples have a very different sort of burden then non-multiple siblings, in that they feel that it could have been them, and then there is a sort of survivor guilt.

      Good Luck :)

      • Thanks, Luna! We’ve essentially used the same words you have, and I, like you, would probably not give Bobby anything to “fix” him because I LOVE the person he is. I am currently working to get them into a support group. I didn’t realize (stupidly) how much autism affects them.

  70. Hello, People of Diary of Mom! I have a question regarding summer time. Our son is turning four and is in a five day a week autism support preschool class. Obviously it will not go through the summer. We are in a huge quandry about summer. Both my husband and I work. He is at the age where he is too young for the autism camps. He is “high functioning” but I am terrified about sending him to a summer camp or daycare program. We live in Pennsylvania. Any ideas?

    • THAT is a super tough one. I wish I had a suggestion or two, but i don’t. I live in southern Louisiana and the summer daycare programs wouldn’t take my son b/c of his autism. he’s high-functioning also, but the spot on the spectrum was a moot point. they wouldn’t take him. i tried a couple of places that sat from their homes, but leaving him with people i didn’t know when he was not able to adequately tell me how he was being treated proved too much for me. i ended up quitting my job and staying home. i’m not the stay-at-home type. it’s been hard. we’ve had to make some serious financial sacrifices. but the reward is well worth it, as my children have had the best payoff and my son, in particular, is flourishing. no regrets here, but it is a sacrifice.

      you’ve got some tough choices to make. i hope you find a solution that fits for everyone, one that gives you peace of mind. Good Luck!!

    • Have you requested Extended School Year in his IEP? In our district teachers provide a “regression statement,” recommending ESY for kids who they fear would regress during summer. Might be worth talking to your CPSE/CSE chair.

  71. Do you have an advocate? I’m in PA too (near Pittsburgh) and my son is high-functioning but still needed wrap around services and part of those services was an appointed advocate to help with a variety of things. The past 2 summers, my advocate had a very extensive list of possible programs for my son. I work part time on weekends so haven’t needed a lot of extra care but he did a summer camp program at the museum and they were very understanding and willing to work with him. You might also try to contact The Children’s Institute. Even if you aren’t near Pittsburgh, they might have some recommendations that might be local to you. Good luck and I hope you can find something.

  72. My daughter is 10 yrs old and has been diagnosed with Asperger’s and anxiety. She is currently on sertraline for the anxiety. We are having problems lately that I can’t make sense of, so I am coming to all of you.
    The first problem occurred a few weeks ago. My daughter was playing a game that she made up, while on the playground at school. She has named the game “Crazy Bailey”. I believe she calls it that b/c she is acting crazy while she chases other kids. The problem is, the other children aren’t actually playing with her, they are running away from her. On this particular day, she got into trouble b/c she was hitting kids on the butt. We had talks about inappropriate touching and keeping our hands to ourselves. I also explained to her that she needed to find a new game to play. Then, last Tuesday, I got a call from the school. She was playing the game again and this time she grabbed a boy’s crotch. She got written up and sent to the principal’s office. She was told not to play the game again, but by the end of the day she was playing it again.
    Her focus is all but gone and there is a lot of repeating happening, in order to get her to stay on task. She also stutters and has speech therapy at school, and the stuttering is getting worse lately. I ran into her speech therapist the other day and she said that Bailey says she doesn’t care that she stutters. I know that this will make it much more difficult to correct the problem.
    Her emotions are off the charts lately and she seems to be having a hard time expressing her frustration and anger. Then the stuttering really kicks in and then she just gets angry and shuts down.
    I don’t understand why things are suddenly getting worse. Any help or advice would be greatly appreciated.

    • Hi Chelsea-
      I have an 8 year old boy with Aspergers (and two younger girls on the spectrum as well). I can’t speak to the medication, as we haven’t tried that yet. I have noticed that every year from about Halloween to February, he really starts to “lose” it. His behaviors get a little more… well, exciting. ;) I don’t know if it’s the shorter days, colder weather, or the excitement of multiple holidays crashing together. He gets totally wild, his sensory needs climb, and the tantrumming increases. It always feels a bit like he is spiralling out of control. My only advice is to try to keep things at home as calm and as close to a regualr routine as possible. Just keep on reminding her about what is expected. Excercise seems to help too. I just bundle everyone up and take him somewhere that he can run, or have him haul firewood, etc. Physically wearing him out helps a lot. And take deep breaths, mom.

      You might want add in a reward system – we started a behavior bead jar in our house. For good behavior, we toss in a few beads (a completely arbitrary number, so he doesn’t control the situation by demanding a set number). We do this for each of our children in the same jar, so they work as a team, but if you have just one child, obviously you would just do the jar for her. If they misbehave they lose beads. The goal is to fill the jar. When they do they get a previously agreed upon reward (for us it’s a make your own ice cream sundae party). The key is to keep it consistent, and to try any behavior plan for at least two weeks before ditching it. It has added a consistent, visual mode of encouragement for my kids. It might help your daughter – she may not care if she stutters, but if she gets beads for not stuttering, or for playing an appropriate game with her friends, she might be a little more encouraged.

      It is REALLY hard for my kids to stay on track this time of year. All you can really do is try to keep some level of calm in your own home and try to stay as consistent as possible. Maybe even cut back on (this may seem nuts to some people in my neighborhood), or at least tone down the decorations for the holidays. This has helped my kids. Just keep it simple Only four months til spring….. ;) Hang in there.

    • I have a 10 year old son with Asperger’s and anxiety. We’re not to the point of needing meds yet, but I’ve read that puberty for children with Asperger’s is incredibly difficult with elevated levels of depression. So I’m sure we’ll need something to curb the anxiety. I agree with the other commenter, that this time of year is especially difficult for our kids.

      But, I’d like to add that at the age of 10, hormones can be starting to surge. My son has become “touchy” with private parts b/c he’s genuinely curious and doesn’t know how to handle it. My son has trouble knowing what is appropriate and inappropriate. He pushes boundaries where other children might not. He sees his friends “liking” girls and the girls “liking” them in return. I’m sure his anxiety is playing on this and i’m sure it’s confusing and frustrating for him.

      Maybe she’s chasing them to get their attention, maybe she’s more interested in their attention now b/c of hormonal changes? Maybe she’s just being curious. I’m just making a random guess based on the game she’s playing and the inappropriate touching. Whatever the issue is, I hope you figure it out soon and that the both of you can find a resolution. Good Luck! :)

    • Well, here is a bundle of things that seem to have happened all at once, but have probably been building for a while.

      First, where I’m coming from. I’m a middle aged man with Asperger’s syndrome and I have two children (one boy and one girl) on the spectrum as well. My little girl is 11 an suffers from anxiety disorder as well.

      From my own experience, the “Crazy Bailey” game sounds like protective identification to me. When you are on the spectrum, you know that you are different and that it cannot be changed. I embraced that difference and made it part of my identity. Further, I adapted a “crazy” persona that was even odder than I was in order to protect myself. That way, if someone was attacking me for being crazy or strange, they were attacking my persona instead of my core self. The chasing and scaring her peers seems like her going on the offensive so that she doesn’t have to wait to be attacked, but I will say more on that later.

      Her age is a critical factor for girls with Asperger’s syndrome. She should be starting puberty, and this adds hormones to an already confusing and overwhelming situation. Many of the comorbid psychological problems that come with Asperger’s syndrome get worse with the onset of puberty. I know mine did, as well as many others who have shared their stories with me.

      Finally I will get to the hard part. The chasing with the inappropriate touching really concerns me. With what little you have told me here, I have no doubt that she has been harassed by her peers, and she probably hasn’t told you about it. Unfortunately, this is par for the course for a child with Asperger’s syndrome. Even more unfortunately, sexual harassment by peers or adults for girls on the spectrum is more common than not. Predators deliberately target quiet isolated children, which results in AS children (both boys and girls) having a tragically high rate of victimization. The part where you explained about inappropriate touching and then her behavior escalated is especially troubling. Children on the spectrum learn early on that there are two types of rules: Those that people say and those that people do, and only the second type count. If you tell her that that type of touching is wrong and someone else is touching her or has touched her that way, then words are worthless. Now, there is a possibility that I am wrong and this is just her way of exploring her curiosity due to hormones, but the other possibility cannot be dismissed lightly.

      Last of all, what to do about things. Asking her directly will probably not get you very far. Kids at that age have a very well demonstrated rule that you don’t bring adults into kids problems. If there is a predator involved, it’s even worse. as they use a combination of threats, blaming the victim and emotional abuse to enforce silence. Taking away her protective persona of “Crazy Bailey” will only serve to make things worse. I actually think that “Crazy Bailey” is, paradoxically, the key! Ask her to tell, write or draw stories about “Crazy Bailey’s” life (possibly through a counselor, if you can find one who is used to working with Asperger’s syndrome children.) Ask her to tell general stories and stay away from leading questions and do not react negatively to anything that happens in the stories. Once she gets used to story telling and establishes that it is safe to tell you about negative things, then hidden things will come out on their own.

      John Mark McDonald
      Scintor@aol.com

      P.S. Please feel free to contact me directly about this or any other matter.

  73. My son is younger and I have not had any experience with this particular problem. But I do have personal experience with taking new medications. Aggressive behavior and mood swings are common side effects of many drugs. I recommend contacting the prescribing physician. In my personal experience the first medication is rarely the one that you actually end up using long-term when dealing with depression, OCD or anxiety. The dosage might need to be adjusted or the doctor might want to try your daughter on something else entirely. But definitely contact the doctor.

  74. so, i have a 7 yr old boy with asperger’s. we’re thinking that it might be time to sit down and talk to him about his diagnosis. it’s never come up before. any suggestions for how to do it?

    • Hi Jodi-
      First, let me say I think it’s great for you to tell him. It will help him understand so much more about himself in the long run. I told my son when he was five, about two weeks after his diagnosis (Aspergers). I made it “not a big deal.” We were in the car, my husband was at work, and I mentioned to him about the doctor we had seen, and did he know why we went there? I explained to him that his brain works in a special way. He has something called autism. It is part of what helps him analyze things the way he does – part of why he is so smart. But it also makes some things more difficult for him – like understanding the difference between his friend laughing during a game of chase and crying. But that it was the special way his brain works. It makes him special and smart, and that anything that seemed hard, we would just practice until it wasn’t so hard anymore. I let him process just that much – which he did with a smile on his face. We came back to it in short conversations here and there. He is 8 now. He understood it when I first told him, but he totally “gets” it now. His two youngers sisters are on the spectrum. And today, I made the mistake of hitting three different “technology” stores with them. Best Buy, GameStop and the Apple store. Then I was left to explain to them what sensory overload was – why we had to leave and how I understood exactly why they both started crying in those stores. My 5 year old daughter has pdd-nos. She doesn’t grasp the autism concept as easily as my son did. We talk about it frequently, but I think tonight was one of the first times she really understood it. I explained that they all have autism, which is a word that describes their superpowers. They perceive things so much more clearly than everyone else – “you can hear a conversation on the other side of the room, you see can see all the parts of the picture instead of just the whole thing, you can smell everyon’s perfume and the food cooking and the electronics.” But that sometimes superpowers can be a problem – I’ll bet Superman had to be careful when he hugged him mom that he didn’t squeeze her too tight. We just have to learn to control our powers so they don’t overwhelm us. I let them process that for a bit and then we talked about something else. For some reason, we have our best conversations in the car – maybe because I have my back to them while we are talking. Not sure.
      I guess my point is, don’t act like you’re dropping a bomb on him. Don’t cry. Don’t make it a big deal. If he sees it’s not such a big deal to you, then it won’t be to him. He’ll ask more questions when he has processed the small bites you give him now. It doesn’t have to be an all at once power point presentation. And breathe deep. You are doing a very good thing. Good luck!

    • there are many many books available that deal with this, easily searchable at Amazon. most people i’ve read about use books. the book would start the conversation. i decided to tell my son when he was 8 (he’s now 10) because I was worried someone else would mention it, either in teasing or just curiosity, and i wanted him to be prepared and not caught off-guard. So, instead of sitting him down like i was going to give him bad news, I started bringing it up nonchalantly in conversation.

      When he’d start stimming, I’d ask what he was stimming about. He’d tell me. I’d say that a lot of autistics stim and they really seem to enjoy it. And then ask if he knew what autistic meant. If he was listening, I’d give him our cognitive age-appropriate definition. Sometimes when he says something out-of-the-box but completely perfect, I’ll tell him that I wish I could think the way he does. My brain isn’t autistic…and go from there.

      I think the best way is to bring it up in convo. And don’t over explain. When they’re ready to know, they’ll ask more and more questions. Of course, I have no clue what I’m doing and I’m making it up as I go along. But that’s how I did it.

      I think it’s good to be proactive with helping them understand and accept themselves, so bravo for that. I hope you find the right way to let him know what makes him beautiful. Good Luck! :)

  75. thanks for the tips. i love the idea of comparing it to super powers. he’s so into super heroes so i think that we’ll definitely help. we don’t want to overwhelm him with it but at the same time, we want him to have the opportunity to ask questions. so we’re going to have a special time with just him. we have a 6 yr non-spectrum very talkative and outgoing little girl as well. she usually doesn’t let him get a word in most conversations. we’re planning on talking to him about it and then eventually talking to her about it. she knows that he’s different and has these special appts but nothing more beyond that.

    i’ll let you all know how it goes

  76. Ok so, my son is 5. He is was born with a brain birth defect – dysgenesis of the corpus callosum. We have been aware of the medical diagnosis since he was 10 days. At 27 months we were given a Autism diagnosis via developemental peds & second opinion pyschologist. So two diagnosis – medical and behavioral as it has been explained to me. Now, our school likes to play them off each other or only acknowledge one diagnosis. We have an upcoming IEP meeting on Weds. and looking at draft documentation. I caught that it has him listed with Pervasive Developmental Delay & the Dysgenenesis of Corpus Callosum. And in another spot it reads “..diagnosis of corpus callosum accompanied by characteristic austistic behaviors, impact all areas of his development…” So, should I be pushing for the autism diagnosis or is PDD ok? My son is nonverbal and seems to be closer to 3 yrs in most aspects except for a few areas. Other professionals (private) all list him with a Autism Spectrum Disorder… appreciate any thoughts. As we have gone around and around with our school district on his services. Thanks in advance.

    • wow, that is a problem. i wish i had some good advice for you. in our situation, whatever the school labels my son doesn’t have much affect on what services he has available. if he is deemed special needs, then he has access to whatever services will help him. (legally speaking, of course).

      it has been my understanding that PDD is on the spectrum. the spectrum is so vast that they can’t come up with a moniker for every place on it. PDD-NOS, as i understand it, just means they have enough traits to be on the spectrum, just not enough to have a more specific label. I could be completely wrong, however, since my son’s dx is for classic autism.

      whenever i have questions about the school/rights in my area, i contact the Autism Society’s local chapter. They not only have information, but advocates who will attend IEP meetings with me for free and hash out the details with the school staff.

      Good Luck in your search! :)

  77. Once again Jess…thank you for creating such a wonderful resource!
    I am really in need of some advice. We have recently transitioned from Early Intervention Services to the IU8. It’s a whole new world. We now have a case manager, psychologist, BSC, OT, Speech Therapist and MHA as our team. While I was hoping to love them as much as our old crew I am really struggling. My darling 3year old is growing by leaps and bounds and along with her growth has come a host of new and difficult behaviors. She has an amazing vocabulary that becomes non existent the moment she becomes overwhelmed in any way. I am a firm believer that each of her behaviors is an attempt to communicate. That said her new team, not knowing her well, has turned to an approach that makes me nervous. They seem to believe that her behaviors must all be broken. They repeatedly insist that I show her “tough love” at all times. They reference, of all things, Supernanny, again and again…as if it’s the magic bullet for each of our struggles. All fingers point to me, day after day. They’ve made comments that include, “if she’s really autistic at all…” They show up at school and home unannounced and insist on having discussions about her behavior right in front of her. I feel like I’m spending more time arguing her diagnosis than working towards helping her.
    I feel so entirely confused. Almost as if we are at day one again. I wasn’t sure where else to turn and I’m not really even sure what my question is. I’m just feeling incredibly overwhelmed and frustrated.
    Can anyone recommend a good advocate in SW Pennsylvania? I’m guessing that needs to be my first order of business.

    • Sarah- I am so sorry that I am just seeing this. I had been getting emails regarding comments, but apparently haven’t gotten them recently.

      As far as your problem, email me. I am also in SW PA also with a three year old who just transitioned out of EI. Maybe we can work together. Hugs.

      (Don’t laugh my hubby made this up: super biology babe (all one word) at hotmail .com)

    • I would also add, that you know your child best. If you disagree with something, speak up. Sometimes opening a good dialogue with your team will bring you all onto the same page a lot faster. I’ve had many disagreements with our own teams – I have three children all on the spectrum, all with their own behavioral teams – and I can be very opinionated with them at times, but they are all doing fabulously now. If you want to Email me, I might be able to give you some different contacts. Hang in there.

  78. I am a middle school special ed teacher, and one of my students has autism and major behavioral needs. He hits nearly every day–other students, teachers, even the head teacher, and it’s enough to leave slap marks and bruises. He is very verbal and will tell you that he didn’t get what he wanted, so he hit you. I strongly believe that it is intentional and manipulative, but his parents insist that he has autism, so he is incapable of bullying or trying to hurt someone on purpose. They tell me it’s my fault and I don’t know how to handle him. They constantly belittle us at the school and show us no respect. I have bent over backwards making accommodations for their child, but they basically want me to give him everything he wants. Any advice?

    • Hi Lynn- does the family have a diagnosis? If so, do they possibly have a psychologist or behavioral consultant that you could consult with? That might be a good starting point.

  79. Does anyone have experience with public schools in the Denver, CO area? Please share the positive and negative. Thanks in advance.

  80. My daughter is 8 years old and is on the spectrum with an official dx of PDD-NOS. She is considered “high functioning” and is mainstreamed into a regular class. She does have her own set of challenges, and goes to ST and OT multiple times on a weekly basis. She was late to speak and even later to potty train. Her baby teeth came in late, but her adult teeth have come in at the average time/a little early. She was adopted from China at 14 mos. We have no family history.

    I’ve been hearing a lot about girls who are menstruating at a much younger age (as early as 9 or 10 y.o.). It’s been on my mind lately, how does a parent teach a girl on the spectrum about this part of her life? How do you prepare her for it, how do you teach her how to manage it, etc. Any words from those who have BTDT would be greatly appreciated. If you’d rather not do it on a public forum, please feel free to email me at artisgoodinyourlife [at] gmail [dot] com

    thanks!

  81. Dear All
    I’m starting a new job soon working with, and providing training for, young adults on the autistic spectrum in a digital archiving project . I have a wonderful 4 year old boy with ASD so I am incredibly keen to make the project a success.

    One of the young men I’m hoping to be working with finds it very difficult to talk with people he doesn’t know well. He is also very sensitive to sound. We communicate well over email but when we meet up I find it tricky to work out how best to act. I don’t want to put pressure on him to talk by trying to engage him in anything but very necessary details for the job, so I try to keep our spoken communication to the minimum – but of course this feels awkward for me and I don’t want to come across to him as being cold or rude. Does anyone have any advice? My own son is incredibly chatty, and is also much younger, so it’s difficult for me to draw on personal experience.

    Many thanks in advance for any thoughts.

    Sarah

    • Could you meet in person just to be there face to face, but IM via smart phone or chat room? We had a student at my school (where I work) who was a self selected mute. He would type everything, including his thoughts in class discussions, etc. and the teacher or a friend or table mate would read them out loud. If he had an iPad or iPad mini he could just use the notepad feature and type out his part of the conversation pretty quickly.

    • People on the spectrum can be very focused on a project, which makes it hard to chat. My suggestions is to use e-mails to work on an agreed set of rules. Be blatant about what is troubling you (which he is likely to appreciate.) An example would be work time is for work, and break time is time to get to know each other and talk about non-work things. Make sure he knows that it is perfectly acceptable to talk about work related things during work time (he may not know this.) Make these rules clear, and precise, and with no unstated assumptions, if it can be helped. Let him know it is always allowed to ask for clarification on the rules. If he is up to allowing chatting on non-work subjects during work, again make clear rules so that he knows what is acceptable. (i.e. Any subject is OK as long as it takes less than 30 seconds. It is courteous to ask how you are feeling at the beginning of each day. You can talk as much as you like if you can still do your work.)

      Start slowly. most of us on the spectrum have had bad experiences with unwritten social rules at work, so we feel like we are walking through a mine field. Give us clear rules and, once we feel safe, it tends to be hard to get us to stop talking.

      John Mark McDonald
      Scintor@aol.com

  82. So what would be your take if your school district approved a program for special education in which they decided to name it – SAILL – Students Attaining Incredible Life Lessons ? It is for a k-3 multi-needs classroom? I have lots of questions about what even will be going on in the classroom….life lessons is that code for life skills. My desire is to see my son, 5, be taught academic lessons…really given a chance. My concern this move is to a life skills approach and even more that the district has a low expectation for what my son can learn. Incredible Life Lessons….is it incredible he can learn? Thoughts…ideas about how to enlighten the district on my feelings? This is the tip of the iceberg as the staffing, location, curriculm are still to be determine BUT yet my kid is being pushed to this placement for next fall. This seems to be their move to not allow us access to a private placement. I should note we life in a small town, 2500 people, so thus a school district too. Thanks for any input!

    • Oh Janna,

      This is one of those things that could be very good or very bad. My personal experience with school was that the academics were easy, it was my peers that were incomprehensible. People on the spectrum like myself need to be taught social rules and interactions directly and blatantly or we do not get it. If this is their goal and how they run the program, then this is a good thing.

      On the other hand, both of my children were placed in special needs classes where their academics were (in my opinion) unnecessarily “dumbed down” when they were quite capable of doing grade level work or better in many areas. If this is what they are doing, then this is a bad thing.

      My suggestion is that you go talk to them directly. Take someone with you who loves your son and is unflappable and who knows what you are trying to get across. I would say something like, “Children on the spectrum are well known for developing at different rates in different areas. They may be behind in one area and well ahead of their peers in another. I really want to make sure that his areas of strength are not being neglected while the areas he may be behind in are being addressed.” The idea here is to let them know that you expect them to assume competence in your son in all areas that he has not shown difficulty in. Most teachers want to be on you son’s side and be your partner in making him successful.

      I know many schools are having financial difficulty especially with unfunded mandates (where they are required by law to provide services, but are given no money to do so.) They are probably as frustrated as you are if not more so. Offering to be a partner and a resource that is trying to help them will often get them on your side and lead to a much better outcome.

      John Mark McDonald
      Scintor@aol.com

  83. I was reading on CNN about the boy that the man is holding hostage in the underground bunker. The police had said the child needs meds and the perp got them to him but never said what they were for. Tonight I read that he is one of our kids, Aspergers and ADD. Can we all please say a special prayer tonight for the child and his safety? My daughter would not be able to handle being in a small enclosed space for as long as they have been there and she don’t have the added stress of ADD. Thanks everyone,
    Mary

  84. Thw mon from “The Crumb Diaries” posted a link on her page to a family that is at the end of their rope trying to get help for their daughters outbursts. She has autism and has hurt the mom during an outburst. Wanted to share if anyone has info that could help them. Here is the link to her blog:

    thestatuswoe.wordpress.com

  85. I need some help. I am looking at investing in some tools to help my son with his sensory needs. He seeks movement and chews like crazy but I also need things to help calm him down when he is upset and the meltdown is nearing. There are so many products I don’t know where to start. I was just wondering if anyone has purchased anything that they have found works well.
    Karen

  86. Hey there…

    I have been feeling a little helpless and lost lately to the point of tears so I thought maybe I should check in here… My son is going to be 12 in April. He is diagnosed with Aspergers / Adhd. I have recently gone through a divorce and we recently moved across the country and are now living in my parents house (a place where my son is VERY comfortable and used to, thank goodness). I realize this is a difficult time in general – but my son has totally “checked out”. On the weekends, it is a struggle to get him to maintain contact with anyone socially- let alone leave the house and do anything other than playing minecraft with his friends online… Things that haven’t been a struggle for us since he was five years old, such as dinner routine, bedtime routine etc are now a battle.

    Puberty is hitting him so hard. He is 5’3″ and growing so fast.

    I am trying to determine what is Asperger’s affect on this time in his life -vs – puberty for all “tweens” in general…

    I feel like I had “it” figured out, which is silly I guess- but I knew where his vulnerabilities were, I knew how to handle them, I knew how to connect with him as a young boy… THIS… going on 12… is a totally different world.

    My instinct is to go back to basics. Outlines on poster boards of schedules of the day which instead of including tooth brushing and meal times would now include times for when xbox and cell phones are appropriate and when outside time on weekends (which has always been a struggle) is expected.

    Also… he is finding it IMPOSSIBLE to fall asleep at night. I have moved dinner to earlier in the night – no milk or sugar late in the day… nothing seems to help. He has a lot of anxiety about the dark etc, we battle over turning the lights off in his room because he can’t fall asleep with the lights on – but when I turn them off he has so much anxiety over the dark that he can’t fall asleep with them off either.

    Now, as I type this, I realize that all of this could just be signs of non-routine due to this giant shift in our lives.

    I just feel like my son and I are constantly in a battle. I know he needs me but he has emotional mood swings that are hard to handle. When I try to instill rules it’s like all hell breaks lose.

    I feel like a terrible mom… I feel like everything I thought I had a handle on, I have no idea what to do about anymore because you obviously can’t handle a 6-8 year old the same way you would handle a 12 year old. I feel like this jump of who my son is, came upon us so quickly.

    Anybody else have a pre-teen on the spectrum?

    Thanks so much for listening – feels so good to write it out instead of walking around with it in my head.

    Thanks,

    Amanda

  87. You are not a bad mother, but you and your son do seem to be going through a very hard time in life.

    Let me introduce myself. My name is John Mark McDonald. I’m a middle aged man on the spectrum and I have two children on the spectrum as well (son, 13 and daughter, 11). Your parents going through a divorce, hitting puberty and moving all at the same time would be hard on anyone, and acting out under the circumstances is perfectly normal (of course, this doesn’t make it any easier to deal with.)

    You mentioned that your son has withdrawn from social contact on the weekend. You’re going to have to trust me on this, but this is the most natural thing in the world for a person on the spectrum and should be treated as such. For those of us on the spectrum, social contact is distressing and exhausting. Telling us to be social when we are under stress is like telling a gasping athlete who is dripping with sweat “why don’t you sprint around the block and that will make you feel better.” People on the spectrum NEED solitude and downtime to recharge and recover. If he is interacting with friends online, then he is getting all the social contact he needs and can handle right now.

    On the other hand, clear rules and schedules would probably be a great thing right now. This will be similar to when he was smaller, but with some significant differences due to his age. A great thing to do here is sit down together and figure out a set of clear rules and schedule TOGETHER. If you let him know what you want, he will do most of the work and will probably surprise you with how strict the rules he will come up with. You job will be to remind him of areas he may have overlooked and to NOT bring up the past. This exercise can go a long way in rebuilding trust and helping him feel that life is getting back under control.

    The last thing I should mention is that transition points in life are always hard for people on the spectrum. Certain “experts” and pieces of literature seem to give the impression that one can solve the problems of being on the spectrum. This is patently false. Those of us on the spectrum learn to work around the things that do not come naturally to us like they seem to to everyone else. This does not stop them from being hard. This also means to a growing kid on the spectrum that every time that our peers make a major transition, we have to start over and learn a whole new set of rules about things that make absolutely no sense to us. It’s going to be hard, and he is going to struggle EVERY TIME. I’m 43, and it’s still happening to me. This is a normal part of life on the spectrum.

    Anyway, this is a hard time for both of you, but with some time and patience (and a few adjustments), this will pass and things will get better.

    John Mark McDonald
    Scintor@aol.com

  88. Dear John,

    Thank you so much for your response. I can’t tell you how much I appreciate it. The advice to let my son be a part of the scheduling process is great.

    Also the reminder that these problems can’t be “solved”. I guess that’s me trying to find some structure myself. :)

    Also, it was very comforting to be reminded that it’s okay to let him get down time in his room alone… I just always feel that I’m not doing enough, I’m not trying hard enough… I feel guilty because it’s easy to let him stay in his room all weekend… Sometimes I feel like he’s the forgotten child. I have a three year old and he gets so much of my attention… I guess I just want to give my eleven year old attention too.

    It’s very good to be reminded that leaving him alone is maybe just what he needs.

    We used to read books… we used to watch movies together…. now, the preteen “coolness” has set in (and I think he mimics what he thinks being “cool” means) and he doesn’t want any of that anymore.

    Ugh!

    But honestly, thanks John, really a helpful, thoughtful email.

    All the best,

    Amanda

  89. None of us can do it by ourselves. This is an especially hard lesson for those of us on the spectrum to learn. You reminded me of one more tip. Often those of us on the spectrum like to do things “in parallel.” This means doing the same thing at the same time, although not necessarily together. A good example is each of you reading a book at the same time, (although the favorite of boys on the spectrum is playing video games on two separate machines.) Try and think of something you both like to do that is calm and quiet. My son and I do this all the time (and it baffles his mother) and it makes us both feel great.

    Anyway, I am glad that I could help, and I always try to be available.

    John Mark McDonald
    Scintor@aol.com

  90. Wow. That is great advice! I’m thinking of Jess’ post about Christmas… Maybe I’ve just been holding on too tightly to what I wanted to do with him. I will give it a try.

    Thank you so much.

  91. I am a big fan of Jess , Luau, Katie and Brooke and just love living vicariously through them because, yes this is just like my life too. Well, mostly because Brooke ‘s father is supportive. My question is: do any of you know of any resources, support paths or practices to help deal with my son’s father, we are no longer married, who does not believe our son is ASD and does not want him on an IEP? It is constant conflict and I do what I can but I worry about the best interest of our son. School is caught in the middle and their hands are tied because we must agree. I could always hire a lawyer I cannot afford, but I would rather try a less conflicted path to try and resolve. His father is stuck in the new term Jess shared with us from another’s blog, “Ableism” where he wants our don to be “normal” and I just don’t know how to cope with it all. Any guidance, suggestions, and/or advice would be appreciated.

    • wow. that is a tough situation. my husband and i don’t always agree on what’s best for our son, but we still live together so i’m able to manipulate him a little :D

      i’m not in your situation, so the best i can do is try to imagine what i’d do if i were. there is a local community-supported counseling group here that operates on a sliding scale fee chart. they would work with both parents in counseling, which would help your husband process and accept that his son has ASD. mediation is an option, but you’d have to get him to agree and then there is the fee.

      regardless of how this situation progresses, i hope you don’t let it get you down. lots of parents don’t agree on how to raise their kids. the kids turn out okay and so will your son. as long as your son knows that YOU see him as he is and love him, that he can be himself with you and that your home is his haven, he’ll know that he’s valued. i don’t mean to underestimate your plight, though. if i felt that my husband was stopping my child from getting the most benefit from school resources, I’d feel angry and cheated. if your husband refuses to budge or cooperate with mediation, maybe you could see a counselor. at the very least, it would help you deal with the emotions so that you don’t end up resentful or bitter, which in turn will help you be a better mom. sorry i don’t have any answers. i truly hope you find the solution you’re searching for. :)

  92. My son will be 9 in a few weeks. He is PDD-NOS, well enough functioning child in a regular ed classroom with little support. Great, understanding teacher, accepted by peers. I said ACCEPTED, not embraced. He is quiet, flies under the radar, you won’t necessarily know he is spectrummy till you spend a few minutes getting to know him, but once you do, it is fairly obvious. There are few playdates, birthday invites, etc, but he is fine with this. Full disclosure I do not seek playdates with “unknowns” from outside. He plays well with his siblings and the occasional “other” that comes in who gets him, but he does not ask for outside play dates nor does he question the lack of invites, etc. That is my concern, but not his, and he relishes his alone time as much as he may enjoy joining in a playdate in progress for his older sister (she is very inclusive and kind). I will admit that him not pushing makes me not push, as I want to protect him as much as possible from kids who won’t get him. I AM SCARED that they will not love him or tolerate his quirks when they are one on one. That they will think he is lame or count the minutes till they leave and then NEVER want to come back. I see the looks he gets sometimes when he is having a “moment”, and it hurts my heart EVERY. SINGLE. TIME. He’s not freakish, he’s just HIM. A playdate is fun for him for about 15 minutes and then he wants to do his own thing and will leave a friend hanging. No bad intent, just had his fill and moving on. He’s different with his siblings since they know him and embrace him and treat him like any siblings would. If he leaves the scene they move on and do something else in their own home. He is happy in his skin, happy with who he is, and doesn’t see/care if he is a little different.
    My husband feels that I need to push him and schedule more playdates. I am on the fence. I so want him to have friends, but I want them to be the friends that he FINDS or find him, not the ones that I set him up with in a game of trial and error. Like a matchmaker. I want it to be on his terms, with a kid who thinks he is cool and who he thinks is cool and then they are cool. That has more value to me than a setup.
    Please thoughts? I think….?

  93. There are so many comments on here that I couldn’t read them all to see if anyone has posted this already…asking for grace everyone! My son does alot of the “scripting” that Jess has described with her daughter, and I am wondering if the best approach is to play along, and respond to the script, or if it is better to try to steer the talking toward a more conversational give-and-take. I am wondering in part because his teacher says that he does this at circle time and it is very distracting (possibly his way of disengaging from something that he is struggling with). Its an Autism class, a special ed teacher, so I don’t think she has a “problem” understanding his issues. I would love to find a way to get him to attend to tasks and people rather than isolate himself with his repetitive speech, but I honestly don’t know if that’s right. Anyone?

    • That repetitive speech can be the first step toward meaningful conversation. It teaches the give and take if you go along, it’s predictable therefore comforting for the child, actual words and sentences are used ( in most cases, lol), and for my kid eventually those scripts started to evolve. Same cadence and inflection, but different words appropriate to the conversation. I still hear it sometimes and he’s 9, but other people can’t tell because they haven’t watched Max and Ruby in years to remember. :-).
      Also, the script can indicate the emotion, meaning there can be a happy one, one that is triggered by anxiety, etc. I would tell him “no tv talk right now please” when it was not appropriate or being used for avoidance. (On the upside he’s probably gonna have an amazing memory, which comes in handy… Unless its to remember a mistake you made). There’s kinda no getting away from it esp at such a young age. Ride it out babe and try to correct it when you need to, but know its still gonna persist. Perseverative language has an upside and a downside.

  94. Hi there
    My son has autism and will be 5 in a few weeks. He is now successfully peeing in the potty. He will not poop in the potty. He will sit on the potty, but not go. He will either hold it, go outside or in his pants as soon as he is off the potty. :(
    I have tried scheduled toileting, the potty party method and giving him highly reinforcing items (or the opposite-letting him know he will receive a reward). Nothing seems to work. :(
    Please let me know any advice, tips or ideas that you may have. Thank you.

    • 1st of all, it doesn’t matter his age if he’s not cognitively ready. but, regardless, i just went through this with my NT daughter. She’s all good with #1, scared shitless of #2. (<–see what i did there?) So what I ended up doing as a last resort was feeding her a natural food that was a known diarhetic and then waiting maybe 20 minutes and then setting her on the potty until she had a movement. Once it took 35 minutes of sitting and I felt (feel) like Mother, Dearest. I did that until she lost her fear of going and did it on her own, making such a large production of our victory that she now expects a party after every poop. Disclaimer: all natural foods, never enough to cause dehydration, just enough to strongly suggest to her bowels that something needed to happen, and my daughter is NT with a slight anxiety disorder which is not the same as a child on the spectrum. I also tweaked the rest of her diet replacing most beverages with water, etc.

      My HFA son was almost 5 before he mastered the potty. A lot of us have potty-training horror stories. The peer pressure to have your kid potty-trained by a certain age is the most stressful, for me. I hope you act out of support for your son and not in desperation to please the masses. I wish there was a fail-safe secret I could share with you but each child is completely different. Good luck to you and try not to let it get to you. He'll get there. :)

      • Thank you so much, Luna. Your responses are always so thoughtful.
        He is on a rather natural diet, since we avoid high fructose corn syrup, artificial colors and preservatives and a few other things. That leaves mostly the good stuff. :) I have been increasing his fluids in the hopes that it will make things easier on his system. I like the method that you used with your daughter, and think that will work for us. Since he doesn’t want to go back to pull ups, we kind of have to push forward. :) perhaps patience and consistency will work in the end (fingers triple crossed). :)

    • geez. that is tough. sounds like he’s already on an optimal BM-supportive diet. i talked with the hubs about a strategy when we were going through it. how do you make someone want to relax and go?? once, after 3 days of nothing, i gave her a half spoon of karo syrup. not sure if that fits into his diet or not, but it had an almost immediate affect. (and thank you so much for noticing my comments. very sweet of you!)

  95. We just went through a similar thing with my daughter. She was about 4.5 when she started to go to the bathroom pull-upless. But it wasn’t untll she turned 5 before she could actually tell she had to go and let us know. That’s for #1. #2 was more difficult, she would hold it for days. She just had some issues and in the end our friend whose (NT) had similar bowel issues told us she gave her 2 prunes a day at breakfast. So we started as well (daughter is PDD-NOS). It helped quite a bit. She’s not regular every day but much more than before. In terms of getting her to sit on the potty that was also difficult but it’s amazing how videos, social stories, a little peer pressure, and a lot of bribery-rewards-cheering-and stickers can do. It seemed like we searched for the perfect thing that would keep her motivated but in the end she the novelty of a reward would wear off so we had to switch around a lot.

    By 6, just in time for kinder (late birthday) she was finally able to let us (more importantly, teachers) know and not have any semi regular accidents but our biggest problem was night time wetting. We were thrilled that at just days before her 8th birthday she was finally able to keep dry for 7 consecutive days. For three years it was fits and starts with the night time training and I felt an absolute failure. But now I know she just wasn’t ready, her body wasn’t ready. So some things you simply can’t force to happen. If the body isn’t ready, no amount of training will help.

    Good luck!

  96. Hey Everyone: First time poster here. I think this is such a valuable resource and right now I have a question to pose to the “village”.
    I have an almost 4 year old who while is not on the spectrum she does have Severe Childhood Apraxia of Speech, Hypotonia and recently diagnosed with Sensory Integration Disorder. With her Sensory needs she is very much a seeker and in the beginning when we began to notice something was “off” we would see her putting her tongue on things, pillows mostly but some of my clothes depending on the texture of the cloth. Over the past few months it has progressed to her sucking her tongue. This sounds so weird but its the only way I can find to describe it. Her tongue protrudes and she sucks with her tongue out. It is similar to a thumb suck but backwards sort of. The problem is that with this behavior and her low tone her enamel is disappearing from her front teeth. We do have an appointment with a dentist next week and I am hoping that perhaps they have seen something like this and can offer support as well. I have a feeling they will want to pull her front teeth which I am prepared for but I want to find a different oral input for her that won’t affect her future teeth.
    Has anyone dealt with anything like this? Any other options to mention to the dentist or therapist?
    She currently receives 120 min of speech therapy a week over 3 days / no OT because our insurance won’t cover and I can’t afford the costs along with speech.
    Thanks in advance for any help you may have.

    • I’m not sure I have any good answers for you. My daughter sucks on her bottom lip constantly and goes through intermittent periods of teeth grinding… Have you tried chew-noodles or other sensory type chewy toys that she could get some input from? There’s a website called fun and function .com (all one word) that has lots of sensory toys for chewers – even if you didn’t get something there, you might get some ideas… Another trick I discovered, through trial and error, but then confirmed by OT – low tone kids have trouble finding where their tongue is in their mouth, which leads to feeding and speaking difficulties. So big flavors – especially spicy flavors- can actually be very helpful. We give my daughter salsa with her eggs in the morning, my son is best behaved in Indian restaurants because the spice gives him the input he is craving. Not sure if this will help your little one, but could be worth a shot. Start mild of course, but see if she likes it.

      • Thank you for the site to check out. She isn’t a chewer really but it might work and I am willing to try. My concern is that it’s mainly when she’s sleepy and sleeping that it happens a d I don’t want her sleeping with anything that could be a hazard of any sort.
        She loves most all foods and does like some spicy stuff

      • The OT theory is often that if you can get enough of the right kind of input, then possibly they won’t need to seek it out on their own- that their sensory appetite will be satisfied to some extent. It’s not always the case. Like I said, my daughter still sucks her lip, still grinds her teeth…. I’d be really interested to see if someone else has an idea for this one, because we could use some help over here as well.

    • Is she allowed to chew gum? My daughter is allowed to chew gum after school after her therapy session, she’s is also allowed to chew gum after dinner for about 20 minutes. But nothing before lunch on the weekends and definitely not during school time.

    • I also don’t have any really good answers for you but my daughter does a lot of oral seeking as well. A few things that help her lessen inappropriate seeking are incorporating lots of crunchy foods into her diet ( baby carrots, popcorn, shredded wheat), massaging the inside of her mouth with a baby “toothbrush” (gum cleaner), lots of regular tooth brushing, and sadly, lollipops. As Erin mentioned, the more input we provide through the day, the less she struggles at night.

  97. My son has recently had a bout with loose stools and some diarrhea. (YAY FOR FUN TOPICS LIKE POOP!) We are hoping that it is just allergy related (accidentally ingested some dairy at preschool) or a virus. However, I am wondering if anyone has seen digestive problems in their autistic children due to stress? He is four years old and doing well in an autism support classroom. He was doing so well that the increased his time in the inclusion room to full days. It seems like he’s regressing with the potty and having more temper tantrums. His team, my husband, and I decided to back him off in the inclusion room to half days for the time being.

    Does stress seem like a plausible explanation to anyone or has anyone had a similar experience? Thank you.

    • Oh goodness yes! I have had Asperger’s syndrome for 43 years and I always have digestive problems when I am stressed. This is one of the less fun side effects of being on the spectrum. Digestive problems are so common for those on the spectrum that many self-advocates recommend adding it to the criteria.

      John Mark McDonald
      Scintor@aol.com

      • Thank you for your response! I’ve notice more digestive issues when there are big changes in his schedule or more transitions in his day. I am sure it is causing stress; I know changes stress me out! Hopefully backing off on inclusion and easing him in a little more slowly will make a difference!

  98. We have experienced the same thing. When our son (who is almost 5) had his schedule changed at school to include more transitions(which are always difficult for him)he experienced diarrhea and diaper rash.He also started refusing to even try to sit on the potty for a while. I would say that stress can definitely contribute. And not just in our kiddos.

    Anxiety is the activation of the fight or flight system when no fears are present. That stress causes a rush of adrenaline that redistributes both water and blood flow. That redistribution means that your gastrointestinal tract is not filtering water correctly, leading to poor stool health. Your body also slows the digestion of food, which contributes to diarrhea.

    There are additional factors at play as well. For example, the stress of anxiety will put a considerable amount of physical stress on your stomach and organs as well, and that pressure may lead to your body not processing food well. All of these can lead to diarrhea.

    It sounds like you have taken positive steps to reducing his stress, so that should help.

    • Thank you for your reply! This is exactly what we are dealing with. He has more transitions and slightly less assistance through those transitions. The expectations are higher and it seems like he is having a hard time with them. I will be interested to see if he has less problems now that we are backing our time off in inclusion.

  99. I am going to be totally honest here and say that I am terrified to bring this up in a public setting. But, since NO ONE talks about this anywhere, I figured this would be a safe spot. My daughter is at the Aspie end of the spectrum. (I would also add that our family is full of Aspies…we just didn’t know it until her diagnosis.) She is also diagnosed with Anxiety Disorder because her anxiety issues are severe and crippling. Her sensory issues are also severe, and she also has an extreme need to achieve perfection. In March, she started a rapid downward spiral…and she started having psychotic episodes. I know that many people in the ASD world believe that I have it easy. But, I want to stand on my soapbox and say that there is nothing easy about having to admit your child to a psychiatric hospital. She was in imminent danger to herself and others. After what happened in the school shooting in Connecticut, and the very public statements mixing Aspergers and mental illness, I have been even more reluctant to discuss any of this publicly. But, I NEED to talk to other parents who are dealing with the co-morbib issues of ASD and mental illness. I am walking a terrifying path right now into the unknown. I just want to know that I am not alone.

    • Lisa, I have very close friends whose children have very similar situations. It’s incredibly difficult. I know others will speak up but please believe me when I tell you that neither you or your daughter walk this path alone.

      Hugs to you both.

      • Thanks, Jess. We started down this new fork in the road right after you started dealing with epilepsy. You were describing so many things that mirrored what we were going through. I wished like anything that I could call you up and just share the fear and stress and worry, especially when I was in a hotel room alone, three states from home, waiting for the one hour a day that I could see my daughter. Your blog is one of the safest places I have found to share. For the most part, everyone tries to be polite and supportive. And, I have been trying to think of a way to connect with other parents going through similar events, but NOBODY talks about this. I understand why…we are also interested in protecting our daughter’s privacy. However, if there has ever been a time that I wanted to lean into the comfort of a community, it is now. Thank you for providing such a space.

    • My heart breaks for you. I’m afraid I cannot fathom what you’re going through. I hurt having to hand my son over to the school. Handing him over to a hospital, well, i seriously can’t even begin to imagine that. I have a friend who is the mother of a little boy who is probably facing some similar issues. His mental illness is probably due to his birth mother who abused drugs extensively and had a history of mental illness herself. He has several issues, including Asperger Syndrome. He’s a little young to diagnose his other issues, but his psychiatrist is seeing markers. My friend is distraught as she contemplates his future, his safety, her safety, and the safety of others. My point being you are most assuredly not alone.

      Have you tried the hospital where your daughter was admitted? Maybe other parents of patients could offer support? Does she have a diagnosis yet? Maybe with a dx you could find something online. MentalHealthAmerica.net?? 1-800-273-TALK is a hotline for that website. Networkofcare.org is supposed to provide help locating support.

      Sincerest wishes that you find the help that you and your daughter need. {{hugs}}

      • Thank you, Luna. Honestly, I don’t want you to fathom what we are going through. It is a level of pain that I never imagined. I always thought that there was nothing worse than watching your child suffer. I was wrong. There is nothing worse than watching your child suffer so much that you have to surrender all control over the care and treatment of your child. I had to surrender the rights to see my child…to be with my child…to hold my child…to be by her side through the pain. The rift in my soul is massive. I cannot even acknowledge the guilt and regret that are lurking in the shadows. But, inspite of my doubts, we all survived her seven day hospitalization. I lived for those one hour visits. We were three states away from home, so I had to spend a lot of time alone. Sometimes, lying in the hotel bed a few miles down the road, I would try to project my love and protection to her…hoping she could feel it in her spirit. The day we brought her home was a day of elation. And the beginning of our new normal. She is a new person, and she is better. She now knows that we WILL do anything to help her. She knows that there are other people out there, who are just doing their jobs, who can help her, too. She does not HAVE to have us with her to survive. She now knows that she does not have to let the anxiety win. She has power and choices and options. And she knows who really loves her. I think she even learned to love herself. It was a great treatment facility. We loved the doctor and the staff that we were allowed to meet. They did a great job. But, as for life experiences, it ranks at the top of my chart for most terrifying. And this is far from over. She still has much to overcome. Just the thought of going back to school set off psychotic episodes. Sooooo, this week, I withdrew her from school, and we have registered to homeschool. I will do what I have to do to keep her moving forward. We do not have a long-term diagnosis. We are in “wait and see mode.” So, thanks for listening and caring, even if it is not something you can imagine. And thanks for the hotline numbers. Honestly, I had not even thought to look for something like that.

      • giving her the tools to cope sounds like all you can do. good for you for fighting for her and for letting yourself suffer so that she could get help. i also pulled my son out of school, for much less dire reasons, but i understand completely your desire to put her health and quality of life ahead of what society considers *acceptable*. thinking outside of the box and willing to do any and every thing to help her is what a good parent should do. i know we’re on very different paths but if you feel like talking/venting/whatever, look me up on fb… Luna Mireles…i’m a pretty good listener and i never ever judge other’s choices. sincere wishes you find your village. :)

    • This is a most assuredly a safe place to bring this topic out in the open. Mental health issues spend too much time hidden away in the general populace.

      I am so proud of you for the way your family LISTENED to your daughter, took her concerns and anxiety to heart, and sought help.

      I do not have any personal experience with co-morbid issues so far (fingers crossed), but I have heard of this website called Parenting Aspergers Community. The website is https://www.parentingaspergerscommunity.com/
      There might be more options available there for support.

      Best of luck, and keep us updated. We are here for you.

    • Lisa…you are from from alone! And it takes a lot of courage to do something so very terrifying to help your child. My son is on the spectrum and is also bi-polar. There have been a few occasions where we considered hospitalization…I had looked at a few local facilities and had an admittance plans a couple of years ago. I felt physically sick to think of putting my baby in a psych unit. Had he not been started on a new med that seemed to help him turn a corner, we would have admitted him. I also have friends who have had to admit their kids as well. Anxiety and mood disorders are very commonly co-morbid with ASD. It sounds like she greatly benefitted from her “break” to get the help she truly needed. As with any illness, our job as parents is to find the right doctors and stop at nothing to get them the right help. You did just that. I truly understand the anguish. Perhaps the doctors who have helped your girl can help you find a community for support. You definitely have one here.

      • Thanks, Deb. It has been cathartic to just get it out here. We have friends and family who know what is happening… But, I am the strong one. I am the one people lean on. I have few friends who can handle this. Actually, only one. I consider myself blessed to have her. But, she has her hands full with a severely disabled child of her own. Which is, of course, the only reason she is strong enough to handle MY fears. She has been thru hell herself and survived. When she says I can survive this, I believe her. I was also blessed to have recently met both Temple Grandin and her mother. When I listened to her mother, one of her statements has stayed with me throughout our ordeal. She said, “There are no right answers on this journey. There are only choices. And choices can change. When something does not work, make a new choice.” I needed to hear that because I am terrified of making the wrong choice. So, far my daughter is alive and making strides forward. And, for today, I will count that as success.

    • Our local psychiatric teaching hospital (Lucille Packard Children’s Hospital, Palo Alto) has a parents support group (no therapists, just parents). It meets once a month. There are other parents going through similar experiences to the ones you describe. They advertise it with posters in the outpatient waiting room. Maybe your hospital will be willing to facilitate getting a group like that going, if it doesn’t have one already.

  100. Hi there. I’m a 43 year old man with Asperger’s syndrome with two children on the spectrum as well. I have been dealing with mental illness since my first psychotic break when I was 16 that was brought on by bullying at school. I have only been hospitalized once, and strangely enough, I found it very restful. All the extra stimulation of the world was cut out and I could just sit and work puzzles for a few days. I take mood stabilizers and get along pretty well most of the time. Mental illness is a big challenge in my life, but it’s not the end of the world.

    My little girl began having severe anxiety issues in the first grade. She would have daily anxiety meltdowns and spent nearly a month staying in the front office every day before being assigned to a special education class. She is now doing quite well in the 6th grade with only a couple special classes.

    In both of our cases, mental illness is part of our daily life that we have to deal with and then deal with the rest of life. As someone who has been there, I know it can be lived through with help, support, and by learning the right tools. As a parent, I know that I would gladly take all of her fears and problems onto myself if I could … but I can’t, and that is the worst and most helpless feeling. Please let this community help and support you with love and ideas so that you can help and support your little one.

    John Mark McDonald
    Scintor@aol.com

    • Hi, thank you so much for responding. My husband is on the spectrum, as well as, two of our three children. My mother, his father, some of our grandparents, siblings, nieces, great-nephews…are clearly on the sprectrum..even if not formally diagnosed. To be honest, I think my daughter would agree with you. Although she missed us very much while she was hospitalized, I think she enjoyed the structure of the hospital…and the absolute absence of her normal stressors. She was placed on additional meds and was monitored 24/7, and she was able to 100% focus on herself and her issues. They had some really great techniques for helping her identify her triggers and what to do about them. She has struggled with anxiety her entire life. Right now, she is fifteen, but she has struggled with anxiety all of her life. I had to pull her from school when she was only 6-7 and homeschool her…and put her in counseling therapy to help her. When she went back to school, she could only go in the special needs classroom for several months…where she would cry the skin off her cheeks…until she could slowly adapt to the regular classroom. We have a family history of depression and anxiety, but not the severity that would require a psychiatrist or hospitlaization. I have taken meds for years, and I have used the services of licensed therapists many times. I have never been ashamed to admit my weaknesses, and I have always believed in seeking help when it is needed. But, you are right when you say you would take the fear and problems yourself, rather than see your child suffer. We are facing each day with a good attitude, always moving forward. She is better, more stable, and expressing happiness. But, inside of me, I am filled with all sorts of feelings. I am too raw to even try to sort them out. I cannot even bear to look torward the future. I am trying to stay focused on ONE DAY AT A TIME!

  101. Has anyone had experience with their autistic child in montessori classroom? Pros? Cons? The school where my son will go has a fantastic montessori program. My thoughts on why we would consider it are that he does really well with older children in the classroom and he is actually good at working independently (he just turned 4 in February.) We tried full inclusion in a non-montessori pre-k room and he had a hard time with it (diarrhea, chewing, various stress induced behavoriors.) I am not sure if it is the number of transitions or what it was. On the other side, is there not structure in the montessori room? I apologize, this is sort of a stream of consciousness question. Again, thoughts and experiences with autistic children and montessori schools. Thanks!

  102. Hi, looking for advice, especially for anyone in Maryland about inclusion vs. private contained school at the middle school level. My daughter is 11, 5th grade. 75% mainstreamed at a Type 2 school that is imbedded in a public school. She needs quite a bit of support but is relatively successful in her mainstream class. She does have significant sensory and behavior needs (BIP in place). The county is telling us our only option is fully contained private autism school that we can’t even visit unless we agree to a more restrictive placement. We want what is best for our girl but we don’t know how to weigh the different factors in the decision and realize middle school is a whole new ball game. Anyone who has gone through this have advice??? Thanks in advance!

  103. Forgive me for the very long ramble, but if I don’t get this out of my system I will just crawl into bed and sob uncontrollably and I can’t right now, my daughter needs me. This was a conversation I had with a friend:

    Friend: What i hate even more than “everything happens for a reason” is “god never gives you more than you can handle.” ummm…then what exactly is suicide?

    7:21pm
    Me:
    THANKYOU.
    I have been told many times over both phrases when it came to the miscarriage I had many years ago and M’s diagnosis of autism and our on going challenges with it. I am especially sensitive to these phrases currently because M’s had a rough week last week and if today is a precursor to the week it’s gonna be another rough week.

    Top that off with the fact that now B is going to night school five nights a week -leaving me to do all afterschool pick up, therapy sessions (which I had done for four years before he got laid off) but also tuck in, clean up, dinner and dishes, AND he is in class all day on Saturdays. I feel like if there is a god s/he/it is priming me for the fact that B will probably get into the apprenticeship program and be away from us for weeks or months at a time. But still, I so fucking did not ask for any of this and I am not feeling so special about myself that I think I can handle all this and be an effective, loving, supportive mother and wife sometimes.

    Then I remind myself that many single parents do this for a lifetime, or at least a couple of decades and for us it may be as temporary as 3 years or a new way of life.

    Anyway, so very sorry to unload on you, your topic of conversation just happen to be the victim of my mindset. I should also add that as a special needs parent one of the most damaging to the sense of self as a parent is the ongoing “parent-teacher-therapist” meetings -large and small. The ones like IEPs or the ones where you get pulled aside when signing your child out and hearing about the stuff that’s been going on, usually the challenging stuff, the self destructive stuff, the inappropriate behavior stuff, the social and academic delays, and somewhere buried in all that is the little positive thing but usually it gets totally overshadowed and you walk away feeling completely deflated and depressed that you can’t do more to help your child cope and wonder in complete mind-bogledness why this happens so frequently in school/class and not at home. This type of interaction being a day after day thing and all. And then you curse the universe for this sick and twisted situation because there’s nothing else to do and no one else to blame.

    Ok, I’m done, sorry for being a debbie downer. Clearly I need a shrink and a drink. Heh.

  104. We live about two hours south of Santa Clarita. We have been dealing with our son’s Autism and the state of California for three years now. Send me an email and I will try to help the family in need.

    • thanks, ryan! i’m hoping to find someone right in the town so that they have a personal contact when they land :)

  105. Hey Jess! Is there any chance that you can post a post about siblings of kids on the spectrum? Long story short have an 11 year old nt son who was an only until the twins came along 6 years later. He was also the first grandson on my side-and we have a big family. 2nd art infertility- Go figure- Got preggos by my now hubby before we got married..So funny my mom went with me to try on a wedding dresses, and she had to try on the dress after me to see if it would fit cause she had a pot belly that we both might have by the wedding day arrived-lol! She says to this day that we should have been on Yes to the Dress . Anyways, my buddy Fr. M. @ the hospital that I worked at that time was
    instrumental in helping Markie and I have a Catholic wedding-being under the 6 month mark – Hey , If there is a will, there is a way! So my point? These siblings fight and make fake fart sounds that really set my little guy off to scream” Then he screams back then mommy tries to intervene, then they laugh- torment some more! Seriously, this shit happens when all kids are nt but throw PDD-NOS into the mix? Give me another IPA!!

  106. *sigh* … Edward was not only one of my favorite employees I had the pleasure of seeing every week at Kroger, but he gave me so much hope as to how personable my ASD son could be with a supportive family and employer. I’m so sad that Kroger made this decision to remove him from the store area he knew and loved for 17 years. It’s stories like these that knock the wind out of my sail … http://news.cincinnati.com/article/AB/20130515/NEWS01/305150004/Where-world-Edward-

  107. I am a teacher and work with 8 students with special needs. We have end of year awards coming up this week and a parent contacted me asking that I be sure to give her autistic son an award because he has felt left out before. I have one student receiving an honor roll award and I have chosen 4 students for the other awards each classroom gives. Her son is not receiving one, quite frankly because he has not earned it. I feel that it is important for him to learn that he needs to put in the effort to be rewarded but he seems to be very spoiled at home. Thoughts or suggestions on how to deal with this?

    • I’ll be very interested in seeing how other respond to this. My gut reaction is that it’s simply not appropriate for any parent to ask for a merit / performance based award for their child and if he doesn’t deserve it, then giving him one would not only devalue the awards themselves but would do him a far-greater longer-term disservice than the short term satisfaction of winning.

      However, I’m cautious because I don’t know the situation and I don’t know if he had the support that he’d need in order to earn an award.

      But in general, if you’re only giving out four awards, then the only way that I think you’d be acting exclusionary would be if you didn’t consider him on an equal playing field with the rest of the class.

      If you feel comfortable that he’s not at a disadvantage, I’d tell the parents that these are strictly performance based awards and you’re sure that, given the effort, he has a chance at one next year, as do all his peers.

      Again, gut reaction, not well thought out. Hoping others will respond too!

      • I feel the same way, given the information we have. This came up in a different way last week at school. They 5th graders had been working and rehearsing for 5 weeks on their end of year talent show. The day of the show, an adult approached the director to see if there was something that a child who had been “left out” could do. There had been multiple flyers, emails, and lots of publicity about the 5 weeks of rehearsals. No child had been turned away, even if they didn’t come to the first rehearsals. A child who had come to the final rehearsal had even been allowed to join a group number. But the day of the show? These kids had stayed after school and worked hard. Now they got to leave class early and perform for the whole school. It seemed to us that saying yes would be, as Jess says, a “far-greater longer-term disservice than the short term” of being included.

        I’m assuming that there is a system to reward hard work in your classroom and that he gets “caught being good” when he does work. If he has no motivation, I’d wonder if he needs a goal? Are there such things as goals for working hard? Just thinking off the top of my head. I’m also assuming that his progress reports and report cards have reflected that he isn’t performing to his potential. You didn’t say what age or what level the kids are, so that also could make a difference.

        Good luck!

  108. Hi, Jess. My dd is singing in a concert next week and the organizer is giving the money to Autism Speaks. I dislike the fear/disease model of Autism Speaks, and wonder if there is another charity I could suggest to her? The organizer doesn’t have a child on the spectrum, and doesn’t follow the autism community closely. AS is just the biggest, loudest name out there. My girl, who is on the spectrum, will be singing “Over the Rainbow” in the concert. :D

  109. I’m sitting here writing this and I don’t even know where to start. But I need some help and thought I would start here. Ive never asked for help like this before. I have a daughter with Autism, she is 9. She just finished 3rd grade. She was completely non verbal until age 4. In the past she has done SIB but grew out of the phase. Now we have something big happening. A month ago on May 10th, my daughter wandered outside in the wee hours of the morning. I didn’t even know she was gone. She just got up, and walked out the door only wearing pajama bottoms. We do have several safety measures in place. Shoe ID, door alarms, door knob covers, stop signs on every door from the Big Red Safety box campaign. She has eloped twice in the past but we caught her within minutes. This time baby girl just needed a walk I guess. She was found an hour later about a mile away. An elderly woman walked outside to get the morning paper, and found my precious baby sleeping on her front porch. Since my daughter had no way to tell the woman her name, address and phone number, she called police. They took an hour to respond to the house. 15 minutes later a reverse 911 call went out to everyone in our zip code asking for the publics help in finding the parent of a special needs child. There are not many special needs kids in the area and we live in a very rural area. When the street name was listed in the 911 call, everyone we knew showed up at the house to see if it was our daughter. Here’s the bad part, we only have a cellphone in our house. And it just happened to be on silent that morning. I woke up to find the school principal in my bedroom, waking me up to see where my daughter was. She was gone. And I didn’t even know it. I can’t tell you how hard it is to write that. We got in touch with the police to let me know that our daughter was missing. The state trooper was taking a statement from the woman who found her when they got my information. They showed up at my house, and I was interviewed for an hour before they would let me go get from the house. An hour. Finally they took me to her, where I found her sleeping as well, in the lady’s arms. She looked at me like I was scum. I thanked her and picked up my baby, where she woke up and said Hi Mommy, I want to go home. We arrived back at our house with the trooper to find CPS waiting for us. Where I was interviewed again while an another agent took care of child. I gave the trooper and CPS permission to search the home without a warrant. They took pictures of everything. Down to the dust on the mantle. 2 hours later without finding anything wrong with me and my home, they were gone. I didn’t sleep for 3 days straight after that. I was too scared. CPS advised us to install a different kind of alarm on the door, which we did. A week later CPS shows up unannounced with more questions. Apparently they’ve discovered I’m under the care of several doctors. I was diagnosed with Graves Disease in 2009 and had radiation in 2010. Are you abusing your meds, they asked. I have a thyroid disease, if I abuse it then I would die. I’m also on Anxiety meds. And depression meds. Are you abusing those? Does your medical condition prevent you from taking care of your kids? Can you get your meds so we can take pictures? Finally they said do you have any questions for us. Yes, are there resources out there to prevent this from happening again. *crickets* Do you know about Autism? *crickets* do you know how common this is? *crickets* do you know the statistics? *crickets* After I start rattling off the answers, they say we are learning about it now because of this case. They didn’t know the answer. The very same week this took place was the same week we lost 3 other children in this country who had Autism, wandered away and died. I was heart broken. This too could have been us. And the very people investigating us had no clue about Autism. Fast forward to today. I received a letter from the agent in charge that the case was being closed. And, I’m being charged with neglect. For the next 5 years I cannot work in a school, daycare, run a daycare, drive a school bus, or even volunteer at our kids schools. A background check will show my charges. I have 60 days to appeal it. Which I plan to do. But I don’t even know where to start this process? I could barely afford to get groceries this week because my husband who works for the Department of Defense, is furloughed. How can I afford an attorney? All these stories in the media never say what happens to us parents after something like this happens. Is this common? Is this standard operating procedures? I need help. I don’t know who to call. Where to start. I’m lost. Can anyone help me?

  110. I wish I could offer some concrete substantial help and that I could tell you where to turn. I can’t. I just wanted to let you know that I’m crying while reading your post and I’m in total admiration that you stood up to the people in your house and questioned them on why they didn’t know a damn thing about Autism. I am also stunned that this is how you’re being treated. I think you need to post what town and state you are in so that if anyone knows of any legal aid places in that area, they can point you in the right direction. I can’t imagine how you are feeling right now. My heart goes out to you.

  111. Oh, honey, I am so sorry. What a nightmare. I don’t know where you live, but I live in Alabama. We have an agency that provides free legal support and representation of any family with disabilities, not limited to autism. I know other attorneys who provide free legal advice to parents dealing with situations like yours, because they have children on the spectrum, too. I have no idea what is available to you, but try a google search. You should have a chapter of the Autism Society of America in your state. They also have access to extensive resources (assuming you are in the United States). I know this is a horrible situation you are in. I know that ALL of us in the autism community understand. There is no way to predict what out babies will do. I stay at my ASD daughter’s side 24/7 right now. She is in a completely different situation from your daughter, but it is life and death. I live with fear and worry and regret and guilt. It is a horrible place to be. And, I do almost nothing to take care of the house. I would be horrified if someone took pictures in my house. I don’t have time for housework. I am too busy fighting for my daughter’s life. I hope you keep fighting. As hard as it is, this could be a breakthrough event for your area. People are ignorant. If people don’t live with autism, they just don’t understand. And they NEED to learn. You may need your community again in an emergency. I know you are scared, but turn that fear into your battle cry. Keep writing to us here. There are many who read, even if they don’t respond. You never know the resources you may find.

  112. Hello there,

    First of all, don’t give up!

    Dealing with CPS can feel like you have the entire weight of the government against you,but this is an illusion. You have the opinions of a couple of overworked bureaucrats verses the reality of your life and love of your daughter.

    CPS is most often filled with people who want to protect children at all costs. They have been given the authority to bypass the normal trial process in order to do this. This is a power that should only be used with great caution and wisdom that has been placed in the hands of overworked bureaucrats. This has often led to systematic abuse.

    If I were you, I would insist on trial before a real judge and jury. First, this calls their bluff and puts it out of their judgement. There is a good chance that the charges will be dropped when they actually have to prove them. Be careful, they will try their hardest to get you to sign away your rights. You have the right to refuse to sign anything without the presence of a lawyer. They will try to get you to sign away the specific rights of a jury trial and a speedy trial. They will try to make it sound routine. Absolutely refuse these!

    Another thing: If your husband is employed by the department of defense, you may be entitled to representation from the JAG. If this is not the case, by insisting on a jury trial, you are entitled to help from the public defender’s office. Also by insisting on a jury trial, the burden of proof is shifted from you to them. THEY have to PROVE that you were negligent. This is very different from them thinking that you were negligent, which is the caser now.

    Third: Find someone who is calm and mature to help you put together you story of what happened and what your life is like with you daughter. Document what you have done to keep her from wandering. Have them help you put these things together so that you can present them in a calm and clear manner.

    As I said, just by insisting on a jury trial which puts the burden of proof on them will most likely get them to drop everything. Use the system to your advantage.

    John Mark McDonald
    Scintor@aol.com

    • Thank you to those who have commented so far with suggestions. I filed an official appeal today, and left a message with the Autism Response Team with my local chapter of Autism Speaks. I am a member with the Baltimore Chapter since I live in Maryland. Also just wanted to clear up any confusion, I’m not being charged with neglect in the criminal system. Just with CPS. It will show up in a background check though. The woman who runs the appeals told me that a hearing will probably be in about 3 weeks. They are not taking my children from me and have stated that several times. I’m hoping to get some research done on wandering, the statistics, frequency, etc since this will be my main focus of the appeal. Any suggestions would be great, I will keep updating!

  113. Today is one of those days I want off the roller coaster. My son just had a sensory meltdown and his dad got angry because his reaction was “not appropriate or helpful”.
    My son isn’t “autistic enough” to qualify for help, or for his dad to acknowledge that he’s not just an overreacting child.
    But when we have a moment like that where in two seconds he tips over into flapping and hitting his head and crying, I’m just so tired and lost and it breaks my heart.

  114. Need a place to start…….another mom and I are ready to tackle a private company that employs many thousands, and its long-standing decision that their benefits do not need to cover occupational therapy for neurological disorders. This is a very very large, very profitable family-oriented company. Where do we start with this? A letter to our division’s (4000+) HR dept is what we’ve been told so far, but it seems so insignificant. But I remember reading here that it takes us ordinary people to get things started and accomplished, so I’d love to hear any and all advice and success stories! Encouragement needed too. Thank you all!!!!

    • I don’t know if it is a success story per se, but it was a brave move none the less. Have you seen the open letter Lou Melgarejo of Lou’s Land posted on his blog to his employer on this very topic? “An Open Letter to Comcast CEO Brian Roberts and NBCU CEO Steve Burke” might be a good place to start……

  115. Thanks! I am familiar with Lou, and like his work, but don’t follow him regularly. A similar line of business as mine (peer pressure?), so I will look it up!

  116. I just wanted to give an update. I filed the appeal with CPS and my hearing will be on July 8th at 2:00pm. I called the Baltimore Chapter of Autism Speaks, and was told that legal advice cannot be given. They directed me to some wandering tips on their page. I’ve asked close friends and family to write letters on our behalf. And staff members from the school will be going with me to the hearing. Having been an Autism Mommy for 9 years now, I’ve gotten used to challenges in our life. But, I never expected any of this to happen. I feel like I’m standing at the bottom of the mountain and wondering if I can get to the top. I wish I had the amazing ability to wear my superhero cape at the moment. It’s hiding in the closet.

  117. I was wondering if there were any Asperger’s moms with Autistic boys. Scooter is 6 and I’m heading into muddy waters. DOAM has been my saving grace for the past two years.. the people on here an extension of that. I would just like to connect to someone who has walked (is walking) that path. Thanks :)

  118. I’m hoping Jess will see this and write/post/tweet anything about this. I know many of us are military families and tricare recently released a new policy scheduled to take effect on July 25th about how and who will receive ABA. The new policy is ridiculous and will cut therapy for many military children with autism. And of course tricare is not being very forthcoming about the issue. Many families are just now finding out or do not even know. The policy takes effect at the end of the month yet it was just released less than a month ago. They are requiring testing every 6 months and if children do not show improvement, they can be denied for future services. This testing is not designed for that purpose. Services may also be limited to 2 years now unless there is some sort of waiver – not listed is how many hoops you have to jump through to get this waiver. Other changes to be made include increases costs, who can provide therapy/testing, etc… We need help and we need someone with a big voice to help. In the meantime, here are a few links. Please read, help, comment, anything. This is the link from AMFAS assessing the new policy: http://amfas.org/aba-assessment-letter Here is a sample letter to send to your senator/reprasentative. So far, 2 member have congress have written a sharp letter asking for answers but its not enough: http://amfas.org/aba-sample-letter and finally here is a petition on change.org: https://www.change.org/petitions/tricare-stop-tricare-from-autism-therapy-cutbacks

    • Thank you, January. I did tweet the info as soon as I saw the disastrous changes. I’m happy to see there’s a petition I can share as well. This is absolutely atrocious. Our service members and their families deserve so much better.

  119. Thank you thank you thank you! Any little bit helps. I think it’s just still so unknown. I heard through a friend and haven’t even received an official letter from tricare yet! I’m furious and stunned that they would release a policy and not let anyone know about it and it takes effect in just 1 month after released. I have also heard that ABA agencies are just barely finding out as well and are not getting much information from Tricare.

  120. My 6yr son, dx’d PDD but more likely Asperger’s (yeah I know, doesn’t exist anymore, whatever). Anyway… he’s a mix of sensory seeking and avoiding. Lately he has started chewing on things and putting dangerous things that he could choke on in his mouth. I need to find him something he can use, both at school and at home, that will not call attention to the behavior and yet give him something safe to use in place of putting small rubber toys in his mouth.

    Any recommendations?

    Thank you so much!

    ~Khrys.

  121. Well, my daughter was diagnosed at 23 months. She is now 30 months old and my husband is struggling as much today as he was the day she was diagnosed. It doesn’t help that we have no support from his family. My mom, who would have been a big help, has stage 5 Alzheimer’s and had to move in with us about the same time my daughter was diagnosed. So, we are overwhelmed on several fronts. I struggle some days still but overall, I just see my beautiful girl and do my best to help her and love her unconditionally. I want so badly for him to have hope but he can’t seem to find it. He says it is because he is her dad and he is supposed to be able to make it better and he feels like he can’t. I’m not sure exactly what I’m asking but I guess I’d like to know if anyone else experienced this after dx and what if anything helped? I try to encourage him but he just gets upset and says that I am in denial about the struggles that she is facing and will continue to face.

    • Michelle, YOU ARE NOT ALONE. I hear this quandary far more than I wish. I’ve posted your comment on Diary’s FB page and will copy responses back here, but if you’re on FB, I hope you’ll come check out what people have to say. Digestion can take time, but it doesn’t mean that he won’t come around to a place of acceptance.

      We must prepare for the future, but living in fear of it means missing out on living in and enjoying the now. xo

      • Jess,
        I can’t thank you enough for posting to Diary’s FB page. I am writing through tears as all these responses have been an answer to many prayers. I’ve been afraid of reaching out, feeling somehow ashamed of my inability to just keep it all together. This has shown me that I truly am not alone and that this community embraces everyone. Your vulnerability and honesty inspires me every day. Thank you to all Diary’s FB readers for taking the time to encourage and show love to me.
        – Michelle

    • You are definitely not alone. I’m sure others have said it on the FB page but there are many of us who get it. I know there are dads who read these posts who can answer this too, but sometimes dads get into fix it mode and when they can’t, it’s very hard to see anything past that. You have so much on your plate coming from both sides.
      I know in our house it took time for my husband to see the future and it took him participating in therapy sessions and IEP meetings and teacher meetings to understand it all. Keep reaching out to find your village, either online or in person. It’s there.

      You can do this. He can do this.

    • It’s hard not to despair when you get a diagnosis. Your story is similar to mine in that I had a very difficult time with my daughter’s diagnosis. She was diagnosed with PDD-NOS when she was about 33 months old. We grieved and were so sad, but at the same time we went right into action: intensive speech therapy totaling 4x a day (private and school district), Floor Time therapy for the first year and a half. She’s 8.5 yo now. Presently she does ST 4x a week during school, 2x during the summer (private). She does OT, swimming, and gymnastics each 1x/wk. It’s a packed schedule, but she has benefited from it tremendously. I know not every can afford to do such intensive therapies that many times a week -financially and time wise it’s a HUGE commitment. But if you can secure any amount of services for your child it would be more beneficial.

      When your child starts therapies you’ll see some progress and I think that might help your husband feel better about the diagnosis. I would also like to say that the benefits of getting professional help isn’t just for your child, but for yourself too. After the first year of my daughter’s diagnosis I finally let myself feel and I was not in a good place. I was seriously depressed and angry. I sought out a therapist for myself. For two years I went, and was able to figure out what and why I was so angry. It’s not just as simple as “I hurt because of my daughter’s diagnosis” it was deeper than that, I had fears that I tamped down, I felt rejected, etc. I worked through it all, and it was tough, but it was well worth it. I am in such a better place with her diagnosis and with myself now.

      There’s so much more I can share with you but I don’t want to take up so much space here. Feel free to email me at artisgoodinyourlife (at) gmail (dot) com if you’d like.

  122. Thank you so much for chronicaling your experience with your beautiful daughter. As a fairly young, single mom of a beautiful 14 month old its given me hope since I heard her early intervention team say the word “autism” the second time they visited. We are still in the very early stages of everything. I’m wondering if you can recommend any support groups online just to talk about all this? Any help would be greatly appreciated

    • I’m not sure which are the “best” support groups for you, but I find a lot of comfort and information on facebook. I follow Jess’s Diary page, and the Thinking Person’s Guide to Autism, as well as some others including local groups from my area. Another resource I have found to be incredibly valuable is to seek out autistic adult’s pages, such as Karla’s ASD page, or ThAutcast (run by Landon Bryce). There are many resources out there, but take it in small bites, a little at a time. One resource will lead to another. The best thing I have found is just to be able to talk to other moms who are going through the same things, but it can take some time to find them. Your EI team may be able to recommend some support groups in your area, or maybe (technically they are not officially allowed) be able to arrange a playdate for you. It can’t hurt to ask.

  123. I’m not sure if this is the place to post this, but I need some information. My 4 year old ds was dx with PDD-NOS June 2012. I have been lucky with the school system, finding outside OT and ST, and qualifying for supplemental insurance from the state. I live on Cape Cod MA. In May of 2013 after evaluation in Boston my son’s dx was changed to Disorder of Childhood, NOS – which basically means there is something there but we’re not sure what, The school system has been amazing in keeping services even though we have this vague dx.

    My family’s major source of emotional support are my in-laws and they are moving to FL in the fall. My husband would like to follow them down, but how will the services in FL measure to the services we have here in MA. I’ve read some horror stories. I would love to follow my in laws but am unwilling to sacrifice my son’s education especially since his current dx is so vague.

    Where can I find accurate information on schools in FL. What have your experiences been? TIA.

    Heather

    • Hi Heather-
      I don’t live in Florida, but a good place to start would be with an Autism Speaks chapter (or other national organization with local chapters). If you can contact the local office, they may be able to provide you with contact information for providers in the area. You can usually get a good feel for things by talking directly with the providers. They may be able to recommend certain school districts over others as well. It is a big decision either way. Good luck.

  124. Jess, you have been a real inspiration for me. I’ve read almost your entire blog over the last couple of weeks. Your perspective as a mom and an advocate is SO helpful for me and I thank you for your honesty and eloquence.

    I have a couple of “disclosure challenge” questions that I hope I can get help and/or input with.

    1. Telling the rest of the family. MY immediate family knows (big sis’s son has Aspergers and is almost 30). My husband’s do not. Funky family dynamics are the problem. My sis-in-law (SIL) has 3 boys and all are special needs; 1 is in a group home and doing spectacularly, the other 2 are at home and are integrated in school. I know that if I share that my boy is also autistic, my Mom-in-law will get depressed cause ALL her grandkids are on the spectrum (I’m pretty sure her brother and her husband are undiagnosed). My SIL will feel competetitve or something otherwise crazy (she was like that BEFORE she had kids and hasn’t changed). I so want to share with my mom-in-law but the dysfunction potential freaks me out.

    2. Disclosure: to my son, at school / daycamp. We’ve been super lucky that our son has been “lightly brushed” by Autism (PPD-NOS at age 4, PPCD as prep for kinder). He’s integrated in school and starts 1st grade this fall. He’s attending YMCA summer camp/daycare and is doing well. Academically he’s fine, but socially – SIGH. He DOES have playmates (YAY!), BUT there is that super-awkwardness with kids his own age. Your stories of support from Brooke’s classmates, etc. have given me courage. I plan on talking with my hubby about introducing our boy to his different way of thinking, and then to his class after school has started. Any help in how to go about this would be GREATLY appreciated.

    Thank you again – so much – for sharing your story. I’m reading Loud Hands now, and am planning on going back to school to get a certificate, then Masters on Education Psych/Autism Intervention. I think being armed with the internal and external perspective will be a HUGE help there as well. HUGS!

  125. Hi,

    My son was diagnosed with ASD 7 months ago when he was 2 years old. We had our first IEP meeting in June, so as you can probably guess, I am quite new to this.

    My husband and I made quite a fuss at the IEP meeting and the principal became involved. We were told that most of the parents at that school didn’t even read the IEP and just signed it. We made numerous changes to the initial (cookie cutter) IEP and had 3 IEP meetings before agreeing to an IEP that expires in October, at which time we will review again.

    Here are my questions: How do I make sure that the teachers are doing what they say they will? Should I ask for a daily note from them? Is that a reasonable request? My son is non-verbal, so he will not be able to tell us about activities in school.

    Thank you in advance for your help!

  126. Ah shit.

    I didn’t even realize that this page was here before I spilled my guys on the “about” page. How did I miss this!? Yeesh.

    I won’t repeat my question(s) but I will write my reply to what Jess so generously replied to me. Hopefully it will be enough without the back story:

    Jess, thank you. I appreciate you taking the time to really think about and answer in length my question(s). It can be very tough trying to figure out how to parent properly, especially when you realize you were likely doing it all wrong for a very long time. I really want to parent my kids with as much understanding and patience as possible. I hate that those traits don’t come easily to me, but I suppose that is in part due to my own ASD traits. And if I am going to learn to accept and adore my daughter’s autism, then I had better figure out a way to accept and make positive my ASD traits.

    Honestly, sometimes I just need to say what is actually happening in my life with my kids that the ‘World’ doesn’t get to see and that my NT friends with NT kids don’t and can’t “get”. I need to have a momfriend who not only “gets it” but also has a lot more experience with it than me to tell me her suggestions, or at the very least her experiences.

    It matters to me very much that you care enough to try to answer this crazy thought rant I had. Lol.

    I did not experience ASD from the beginning of my daughter’s life and learn to adapt to it and my own ASD because I had no idea what we were living and experiencing was ASD in both of us. I just thought she was “more” and she was “challenging” – even “difficult” and that I was just a big asshole and that I always had been just a big asshole.

    Hindsight is twenty twenty, but it’s hard to teach an old dog new tricks and I have been parenting in a somewhat backwards way for about 8 years now trying to figure out why my first kid (NT) was so “good” and my second kid (AS) was “not”. Trying to figure out what I did wrong or if I had just been lucky the first time around.

    I’m being brutally honest here – and I’ll admit that it is hard to see these words written down: “not good”, “what I did wrong”. Because I know my daughter is awesome. And unfortunately for me it took a diagnosis of her ASD for me to recognize that all the things I accepted as difficult and challenging were/are really neat and interesting and great.

    It didn’t help that my NT friends would openly discuss my kid as a challenge or laugh half heartedly about being “stuck with her”. I was easily embarrassed and tried my hardest to change what they saw as bad behaviour in her instead of trying my hardest to have them understand it actually wasn’t/isn’t bad behaviour.

    I am slowly training myself. And I will take your kind advice to heart. Thank you.

    Prevention is better than the cure, and you’re right – when in meltdown phase – there ain’t no cure for that.

    Signed:
    Exhausted and grateful.

  127. We have an opportunity to participate in a study for an oxytocin nasal spray. It requires two blood draws and my six year old freaks out about shots/needles. I’m just wondering if the potential help from the spray is worth putting her through the blood draws.
    Thanks.

  128. My name is Cheyenne and I’m a senior in high school. I may be in the wrong place for this, but I have a good feeling this is perfect! I’m in the process of writing a play about autism. Not a cheesy, after-school special kind of play, but one with a story line and developed plot.

    The idea initially came to me in search of something that would have true-to-life meaning and impact on an audience. I accidentally stumbled upon this page and saw how countless people were supporting each other through this site and loved it instantly.

    Currently, my play is focusing on a young boy who has autism. I’m writing situations of his actual life, then juxtaposing it with scenes that are in his mind; almost like he has a separate world that he’s thought up and becomes his safe reality. I’m showing his progression as a child to a teen and in his childhood, he fully believes he’s a superhero. This idea is just the framework that I’m sure will change, but I sure could use some help. I’m researching as much as I can about autism, but I don’t think I could get any better information than that of those who live it every day. What I’m looking for, is advice of all kinds. I’m looking for stories, testimonies, quotes, real, heartbreaking emotions, characteristics and mannerisms, and finally, stories of hope. Really, anything you could offer would be greatly appreciated and I’d love to collaborate and share the final product with you. I’m not sure how I’d like to integrate your responses, as that will depend on the kinds I get.

    In the least, I’m looking for one word descriptions of autism or people you know that are autistic, (or you yourself). If you’re willing to let me use your name, (or nickname), and could comment a word, I love to use you in my play.

    If you’ve read through all this, I love you for it. Thank you. Please please please help me write this very important play to show the world that autism isn’t debilitating, but a superpower to these kids.
    You’re fabulous.
    ~Chey

  129. Hi Jess, my son has pdd-nos, but very strong language and academics (so far). He’s “easy” – he doesn’t have meltdowns at home; hasn’t really had them at school. Hubby mostly sees him at home. I see him more in the world, playing with peers and such – so I see the “difference”. I know, as hubby says, we’re lucky because son is “minorly” affected. We had a conversation last night, where I told him I started blogging. I’ve been looking into going back to school in the field of Autism Intervention (at a school where they are more maximization focused).

    Hubby wonders if my engagement with autism and getting into advocacy for him – because son is “easy” – is me “overly-mothering” him to compensate for an exceedingly selfish/underly mothering experience from my own mom (pop-psyche :) I like to snuggle with my 6 year old DS and I have stayed with him till he falls asleep (DS likes this) – I plan on “weaning” as we get through September, but this is a peeve for hubby. He also has the “I probably would have been put on the spectrum, it’s overdiagnosed, the machine of the health care world creates the umbrella and has to keep itself going” attitude – he’s cynical by nature, and may be partially right, but he’s also not engaged in the same way with Autism that I am. And once in a while son does something “off” that makes hubby go “that’s it, isn’t it”, but it’s pretty infrequent.

    I’m kind of irked because of this conversation from yesterday. I don’t know how to clarify things for him. I don’t want to have to justify myself. Son IS easy, IS hardly symptomatic at home. I just feel trapped a bit by this. I don’t know if you have time to email me re. this, but if you can, or if anyone else has dealt with this – wotedge@gmail.com.

    Thanks!

    • Having a home environment that is friendly to autistic challenges can make a big difference in how easy or hard he is seen to be. You really can’t judge this until he is taken out of a friendly environment. I sat this as a middle aged man with Asperger’s and the father of two kids on the spectrum as well. While growing up, my home was a very easy environment because autistic traits run in both sides of my family. It wasn’t until I started spending time away from home that I started feeling like there was something wrong with me, It was similar with my children. They had autistic traits from birth, but I never felt like there was something problematic for them until they started spending time away from home.

      John Mark McDonald
      Scintor@aol.com

  130. Hi there,

    I truly hate to say this… and please disregard this response if it is not helpful… but while I was reading your post I thought: This is me. This is my story. This is so strange because I could have written this exact post. Six years ago.

    My husband (at the time) thought I too was overly motherly, that I babied my son because I laid with him in bed at night until he fell asleep. (By the way, six years ago, my son was also six years old)… That he seemed “fine” and he had a “hard time” delineating where Asperger’s (my son’s dx) ended and being “spoiled and babied” began.

    What hurtfully piercing, seemingly benign words.

    Sometimes I feel like a fraud here because my son does seem neurotypical most times… except when he doesn’t… like at night – when he wanders the house full of anxiety because he can’t sleep – and I think back to when he was six years old and I used to lay next to him at night (the only time he would be physically close to me)… and I think of my husband saying I was “babying” him …

    And yes, I too, “weaned” him off of that. And gave him independence and now, melatonin (which does help)…

    And I tried to teach my husband about schedules and routine, and stims that are disguised as “neurotypical quirkiness” as opposed to outwardly autistic symptoms… And sometimes it helped… except when it didn’t. When “meltdowns” did occur – but not the metldowns you see in movies – no, in our world a meltdown came in the form of fierce stubborn disregard for “authority” in an absolute refusal to eat any new food, or go out of the house for anything other than school if it was planned two days in advance etc — and challenging his authority, was something my husband was not keen on. It definitely peeved him.

    By the way, I live in a world where I am constantly trying to convince everyone around me that my son needs me and them in ways that are different than typical kids – including the school psychologists — he currently has no IEP because he is so “high functioning” they removed his asperger’s dx and replaced it with “learning disorder”. So the smartest 12 year old I know, the 12 year old who when friends come by to visit he casually asks them what they think about bombing Syria — if he were in public school, would be labeled with a learning disorder – f’ing absurd. So, thousands of dollars later, after having him privately assessed, I know what his NEEDS are regardless of a label and he goes to a small, private school and he is doing great there. But that required me to seriously come to terms with the fact that world was not seeing what my son needed. I had to trust the voice in my own heart saying these state funded “experts” are dead wrong…

    and so is my “husband”.

    To have that scowling doubt… in my own bedroom, in my own home… to have a disdainful eye cast upon me while I’m only doing all that I can for my dear son…
    was so much more damaging than I could even comprehend at the time… I chalked it up to my husband wanting to make my son into a “man” and being a father figure that I THOUGHT he so desperately needed.

    At the end of the day, all these years later, after our marriage fell apart for other reasons… I started to realize that all of that disdain and denial had so much more to do with his issues with himself than with “the system” or my son…

    And by the way, those issues were: Gross selfishness, narcissism and obsession with my attention (that when being taken away at bedtime by snuggling with my son turned into a “peeve” for him).

    I guess my point in writing this to you this morning is that I beg you to take a look at the bigger picture of who this man is and where these peeves are coming from before you begin to wean your dear little son off of anything.

    Six years later, I would give anything in my power to go back in time and lay with him in bed one more time.

    Now he’s 12. And his “quirkiness” brings upon a whole new world of challenges that I have no idea how to conquer…

    But six… six years old… is a precious, precious time and NO ONE should make you feel bad about the way you spend time with your baby – neurotypical or not.

    I send this to you with the best intentions…

    In terms of writing a blog – there are so many of us out here, who only have our “toes in the shallow end of the pool” of autism — (have you read that blog post? Either Jess wrote it or maybe MomNOS wrote it? Please seek it out, reading it, seriously cleared the clouds away for me…)

    I think a blog from that POV would be wonderful to read.

    Best of luck to you,

    Amanda

    • “But six… six years old… is a precious, precious time and NO ONE should make you feel bad about the way you spend time with your baby – neurotypical or not.” Hey…Amanda. Word. That is all.

    • Thanks Amanda. Huges hugs to you for all you’ve gone through. I wrote a long “replay to all” response. I really appreciate your kind words! My blog is only a few days old, so I love new readers (I have at least 1 so far besides myself LOL). walkinontheedge.wordpress.com :)

      • Just a happy update – we found a good-night routine that works really well, and DS is falling asleep on his own!! Read, tickle, lights off/dreamlight on (he loves it :) Much snuggling, and a short song (same one, every time, 3-4 times, with snuggling. Then good night/see you in the morning. I guess we were both finally ready and I’m proud of both of us.

  131. Bless you.. My story reads as both of yours.. The issues lie within the father yet make the path we try to travel that much more precarious. I left my marriage for the good reasons already listed and can give my son the freedom, space, place of no pressure to be his awesome 6 yr old as he discovers how the world works on his own terms. I am my son’s pit bull, his champion.. I hope that in the new relationship my ex now has with his son has provided him with the insight he was so badly lacking before. I think he is still too rigid and pushing the ‘making a man out of him’ agenda.. And I can only guide him from a distance but at least now he listens more than he ever did and it is better than it was.

  132. Hey PK,

    I searched the blog post out for you. It was written by The Adventures of Boy Wonder, but it’s connected to another post written by Jess… Just a wonderful perspective that helped me so much, that I thought I’d share..

    —-

    The Deep End of the Pool

    We swim in the deep end of the autism pool. Maybe not the deepest murkiest part but we are in pretty deep. Yes Boy Wonder is not very verbal. His social skills and play skills fairly non existent. He struggles to express his most basic wants and needs while we struggle to understand him.

    But our struggles are just that. OUR struggles not your struggles. While your struggles are in the shallower end pool, they are no less challenging just different.

    I’ve never once wished that Boy Wonder was less autistic, had HFA or Asperger’s. I’ve wished he didn’t have autism at all. I wish no parent ever had to hear,”Your child has autism.”

    I empathize with your struggles and I celebrate your child’s victories. But never once have I thought that your child has it easier then mine. I just think their challenges are different.

    I don’t want more company down in the deep end of the pool. It’s crowded enough down here.

    Posted by Boy Wonder’s Mom at 8:02 AM

    • Thanks to you moms! I think hubby comes less from a place of “be a man” (although there is that cultural fear of mama’s boy I’m sure), and more of a kind of cluelessness, and a tendency to be more clinical/logical than emotional.

      We DO have just a toe in the pool, at least currently. And hubby doesn’t SEE because he’s working/studying. He spends quality time with our son and they love each other tons. But dad doesn’t see him very often at the play place every week and how son doesn’t mesh with his peers, doesn’t “get” the rough play, etc. He just sees our sweet, thoughtful, articulate, well-behaved (usually) son. – Until he sees a co-worker talking to son in that “pleased to meet you” way and son’s eye contact SO OBVIOUSLY going AWAY from the person’s face (which he doesn’t usually do in an obvious way) that hubby says – is that a symptom? Or when son does something he’s not supposed to, gets a stern reprimand, and son gets SUPER sad/retreats away from us and kind of hides and hubby asks – is that normal? Incidents that are spaced so far apart that they disappear in dad’s memory, but I have them practically date stamped because in my mind I’m saying “SEE? There it is!”.

      He sees the kind-of-damaging helicoptor mom thing in other parts of our family, and the more extreme autism manifestation in other parts of our family, and looks through that lense. He sees me through the lense of knowing my mother, who is a REAL piece of work in terms of selfishness, and knowing that I don’t want to be that so might be swinging too far the other way. And I might be, but I’m aware of it so hopefully not too far :)

      So I’m going to cut hubby some slack. But I wonder how much of how well our son is doing is in part because of my “over-mommying”? I know my behavior won’t “fix” him (I love who he is), and it doesn’t change son’s brain. But if I am calm, if I understand and interpret the world for him to help him “get” how the world works, if my presence settles him – what if that is part of why he is “easy”? Take away that safe place and then what happens?

      I want my kiddo to be independent, to fall asleep on his own, to be out of sleep pants this year, etc. I don’t want to be the crazy opposite of my mom. I also want hubby to SEE what is there. To see that support isn’t overprotecting or babying. Just because the support wasn’t there when you were a kid and you turned out fine, just because sometimes things are overdiagnosed, doesn’t mean our reality isn’t real.

      And I wonder if a part of it is that if he sees the REAL, he’ll be in that place that dad’s find really hard where you want to fix the real and make things be all the way OK, and you can’t . Maybe that’s a place he’s afraid to be…

      • PK, I wanted to respond to this portion of your last comment.

        “I wonder how much of how well our son is doing is in part because of my “over-mommying”? I know my behavior won’t “fix” him (I love who he is), and it doesn’t change son’s brain. But if I am calm, if I understand and interpret the world for him to help him “get” how the world works, if my presence settles him – what if that is part of why he is “easy”? Take away that safe place and then what happens?”
        From the very beginning, my first child was different. I could never put my finger on it, but I knew. I poured all my effort into easing her way in the world. When she was only two months old, I remember a well-meaning SIL commenting that my life didnt have to end just because I had a baby. I ignored her, and kept following my instincts. My own mother told me to let her cry more, and that it was good for her newborn lungs. And I said that she did not understand how wildly out of control my girl could get….that I had to get her off the cliff as quickly as possible…if I did not, she would cry for the next three hours, until she lost her tiny voice. I hovered and protected and intervened. She was super smart, quick to learn, but terribly anxious. She was inventive and imaginative and creative. But different. She seemed at a loss socially and was emotionally immature and sensory-defensive. Even in infancy, she avoided physical affection. Even seeing pediatric neurologists, speech therapists, and pediatrician a regularly, not one person ever mentioned autism. We moved twice during her elementary years. She continued to be smart and well-behaved and socially-emotionally immature. She went under the radar until middle school. Her awkwardness stood out more and more as her peers became interested in boys, make-up, fashion, and the social structure. And like a smoldering volcano, her anxiety was building. I was still watching her and guarding her and intervening, but I somehow missed how severely depressed she was becoming. I think I was getting tired of always trying to make the world work for her. I suppose I thought that she would eventually outgrow her awkwardness and become a typical teen. I could not have been more wrong. It took a family trauma to send us to a therapist, seeking help for PTSD for all of us. This complete stranger spent a short time with my daughter and said, ” Have you ever heard of Asperger’s Syndrome?” I was dumbfounded. Suddenly, there IT was…the common denominator…the pathway to truly understanding and helping my daughter. She was fourteen. How on earth had we missed this? And, then, there was the domino effect of realizing that my husband was clearly on the spectrum, as well as, his father and my mother, and our youngest daughter, too. It was as if a fog had lifted off of our lives. The answers to a thousand questions were there for the taking. All of this to say, YES. Your style of parenting is very much helping your son thrive. When we listen to our gut and follow our instincts, we improve the lives of our children. I was never swayed by what others thought or said. And, I want you to stay vigilant. Our Aspie kids can do very well in the elementary years, but the transition to teenager is fraught with chanllenges. Physical body changes, hormone changes, social expectation changes, more pressure and independence at school …and that is when that underlying anxiety and depression can rear their ugly heads. It changed everything for my daughter. Public school became a place of torment. Eventually, her issues became life-threatening and she was hospitalized for a short time. But, she responded well to treatment and some new meds. AND, she no longer goes to public school. I will do whatever is necessary to keep my daughter well and to support her dreams. I truly do not care what anyone else thinks of our decisions. She is alive and healing. Her siblings have weathered the storm by her side. We are all stronger for what we have been through. It has been very, very difficult for my husband, even though he himself is in the spectrum. He just cannot understand the emotional aspects she deals with. But, he accepts her. He loves her. He is devoted to providing for her. Your husband may see things more clearly as your son grows. And you KEEP listening to your gut instincts. You may have to seek outside help at some point. Do not be ashamed. If it weren’t for an entire team of talented professionals, I would not have my dear daughter, who will celebrate her 16th birthday in a few days. Buy it took ME to put that team together. It took MY determination, MY desire for information, MY dedication to her well-being, and my willingness to coordinate the efforts of many people in many different places. It also took a huge amount of faith in God. She still struggles, and I watch her like a hawk. If I were to give you one piece of advice, start reading ahead about adolescent Aspies…so you will be more prepared than I was. And, tell your husband, I sleep with each of my Aspie daughters! I stay with whichever daughter is struggling the most. Sometimes, we all three have to join together. It is EXTREMELY common for ASD kids to have sleep issues…going to sleep, staying asleep, dealing with nightmares or insomnia. We all deal with it in Our own ways. At our house, we all sleep better if I am close by. So, sorry if this was overwhelming, but it just really important to tell you that you are in the right track and to keep listening to your instincts!

  133. Jersey, you will never know how your post came to me on one of the darkest days, and how reading it, truly turned things around for me. So much so that I have never forgotten it! I am sorry I couldn’t remember it was you who had written it right off the bat. Thank you for taking the time to share it.

  134. … I need help with school , nasty notes , phone calls , I E P s…
    Autumn has just started Kindergarten she has Myotonic Muscular Distrophy , and autisum non-verbal…cant write doesnt follow rules the way school wants her to , at times she covers her ears and lets out a yell, she is on a feeding tube and has threapy for food issues and aid to help her at lunch , they get upset if she doesnt eat what I have sent..I have taught over and over how to do things and they call and complain about her. Please send help my way .
    Thank you
    Lori Johnson

    • Hi Lori-
      I’m not sure what I can do to help, but I’m here if you need to vent. Is your daughter in a public school? It sounds like she may be eligible for a lot more help than it sounds like she is getting… Maybe we can figure something out together. Hang in there.
      Email me if you like. superbiologybabe@hotmail.com.

  135. I’m at a family party as we speak. There are about 7 boys here around my son’s age, 9ish. They are outside playing football and my son is in here with the adults eating bread and butter and watching Max and Ruby. He’s happy as can be, greets all the boys as they walk by and let’s them know where the football game is. He takes another bite of bread and watches Ruby’s Surprise Party for the 100th time. Did I mention he’s happy? I’m trying to be ok with this. No one is commenting. Maybe they get it enough to not comment. Maybe the boys are at the age where they don’t give a shit and its not worth making fun of because there’s a game going on. Yes I did mention he’s happy and that I’m REALLY trying to be ok with this. I’m trying to follow the leader.

    • Yep, I have been in this place many times. Our kids are fine, but our unmet expectations are crawling all over us. My oldest on the spectrum is almost sixteen and a girl. I took her to a football game last night, to watch her younger brother march in the band. I was surrounded by teenagers, even younger, elementary aged kids, engaging in full-on social behavior. What was my teen doing? She was drawing in her sketch pad, dragons and anime characters and totally oblivious to the game and the social dynamic. Remarkably, despite the heat and uncomfortable concrete bleachers, surrounded by people and Mosquitos, she never had any sensory complaints. She was in her own little bubble and quite content. There was a time that I would have thought SHE would have been in the band or running around with her peers at a football game. But, no, she is happily being homeschooled and does not care one bit about the social behavior of her peers. Like you, I try to follow her lead.

  136. Jess for Sohailah, feedback appreciated ….

    I know I don’t know you – and I’m sure you’re busy, but I have a couple of questions, if you wouldn’t mind? I teach 5th/6th grade, and we have been having Honor Choir Auditions. I have had two children with autism audition and they both got perfect scores. Out of all 175 kids who tried out, only 7 achieved this. My question is, do you think I will offend their parents if I ask them if their child can handle the pressure of the Choir? It has two day a week rehearsals and we will have several performances, some of which are competitive. I don’t want these two boys to have a bad anxiety experience with Choir and then hate singing and everything related to it, but I also see their excellence and want to encourage it. I am new to the school and the school is new, and I don’t wan to offend or insult parents with my questions. Any thoughts as someone who has been navigating this path for a while?

    Thanks so much for your time.

    P.S. I have created a second choir, Glee Club, that has a lot less pressure with some performances but half the rehearsal time and none of the competition stress.

    • As a parent of two high-functioning autistic girls, I would love to have a teacher approach me and invite me to share my thoughts. I realize that not everyone is the same, though. My oldest was in middle school band, and as much as she loved playing, she did get really stressed with performances and the chaos in the daily rehearaals (and all the noise). We have a very competitive marching band, and that pressure for excellence and competition is fostered right away in middle school. I am not sure if she would have survived high school band. We will never know, because she had to start home schooling. It all became too much for her. But that is just MY daughter. I know that there are others in the band who are ASD. And they do fine, and they do NOT want to talk about it. I think it really depends on the student and the parents. I would talk to the principal or teachers or any special needs team members and get their input, too. They might tell you that the family is very approachable. Personally, if the students had the guts to try out, and if they performed so well in the audition, I think it is only fair to give them the same opportunity as anyone else. My husband and I are on the spectrum, and we both thrived in our high school music programs. Just my opinion!

  137. hi there, so we’re having a bit of an issue and i would really appreciate any guidance. we have a boy who just turned 8 this week. he has asperger’s and is doing really well, most of the time. he has stopped having meltdowns almost completely and getting so, so good at expressing his needs before he gets overwhelmed. the problem we’ve been having lately is that when he does get overwhelmed while he’s stopped having a tantrum, he has started trying to hit and bite anyone that tries to get near him. we had a couple of incidents over the summer and now it’s happened at school. he didn’t bite his teacher but he tried to and he did hit her. we’re really worried about this not only because of the possibility of hurting others but also that he is such a loving, affectionate and non-aggressive kid, i’m worried about the issues this is going to create in school. i’m worried that people are going to judge him on these outbursts and not really get to see how great of a kid he is.

    have any of you been here? do you have any thoughts on what we can do? it seems to be a gut reaction he has when he loses it and he’s not intentionally trying to hurt people- kind of fight or flight reaction. but i can’t figure out what triggers it.

    i’m really at a loss here

    • i’m hoping that you get some good responses here, but no matter what please know that you are not alone. so many friends come to me to talk about this. it’s a huge issue for so many of our kids, but one that is very difficult to talk about publicly for a host of reasons.

      we need to ensure that those who work with our kids understand that violent outbursts are a reaction to some kind of stimulus – internal or external, NOT a violent nature, and that our job is to help determine what that stimulus is in order to help to avoid it or mitigate its effects.

      hugs to you and your kiddo.

      • thank you. i do need to hear that we’re not alone. it can be so hard when you see how awesome and amazing and brilliant your child is but the rest of the world only sees the odd tics and outbursts.

    • One thing that helped with my son was to always tell him what I wanted him to do rather that what I didn’t want him to do. My son was always exceptionally large and strong, so I was always reminding him to be gentle. If it is a task, I sometimes guided his hands through it so that he could feel the appropriate amount of force. I also stressed that his strength was to be used to protect. The last thing is if these outbursts seem to be truly random, you may need to check if they are a type of seizure. Seizures are a very common co-morbid for the spectrum and needs to be ruled out.

      John Mark McDonald
      Scintor@aol.com

      • thank you John, for taking time to respond. What I’m finding to be hard is that he has never attempted to bite me and has only very rarely tried to hit me and when he did try that, it was a very halfhearted attempt (if that makes any sense). This seems to be the result of others not really knowing how to engage with him.

        I do appreciate the concern for seizures but I don’t think that’s the case here. It is worth investigating though. thank you again

    • Jodi,
      I have a seven year old son dx aspergers who has had issues around physical aggression on and off as far back as I can recall. While it is hard to know what is going on with your son not knowing you, him, or the situation better, I am happy to share what I have learned from our experiences. If you would like to talk further, I am sure Jess would be happy to forward my contact info to you.
      1. Separate this action from your son. I know that seems obvious but it is one of the most important pieces of advice I can give you. When someone is harming you physically the feelings around it can get murky. This behavior is your son communicating something the best he can in the moment IT IS NOT WHO HE IS. Be sure everyone around him knows that. Be sure you always know that, because you will have to always be on his side when other’s won’t want to be. He is not a violent kid. He is not an aggressive kid. This is not just something autistic kids do. He is a child who is doing the best he can in that moment to communicate his needs.
      2. In the moment. This is, in our experience, always a panic response. When it is happening, it is already too late to have a discussion about it. If he is lashing out when people get near then it sounds like he needs space. Find a way to give him space, quiet, whatever it may be until he feels calm again. Do not try to have logical discussions with him in the moment about how hurting people is not ok. If he is in panic (and it may or may not look like panic to you and I) but if he is in panic he can not hear or process what you are saying and it adds to the panic to have more words thrown at you. Find a way to give him the space he needs to calm down with no other agenda in that moment.
      3. Educate yourself as much as you can. If you have not had the chance to read the words of autistic adults who describe what it feels like to be in these panic situations please take the time to do so. It has been imperative for me as I do not experience the world in the same way as my son and I am a better parent to him and advocate for him when I have a vision of what he may be experiencing. There is a good discussion going on around this issue currently here http://emmashopebook.com/2013/09/11/what-others-had-to-say-love-overwhelm-violence/ and here http://emmashopebook.com/2013/09/12/the-conversation-continues/.
      4. Involve him in researching the cause. When the incident is over begin your search for reasons it happened. We are lucky that my son is very verbal and fairly in touch with his feelings. I can always ask him about it later. He does not like to talk about it. He is embarrassed about what happened. Part of teaching with him around this is that he has to be part of the solution. We discuss what happened without shaming him or telling him how bad it was. Believe me he knows. We ask him to identify what he believes happened and how he felt about it. It often is not the same story as the adults present would give. This is okay. It is his reality and our solutions to prevent this have to start with his reality. Telling him the way he experiences the situation was wrong does nothing to help him work through the feelings in the future and just adds to the failure and shame he already feels around it.
      5. So what’s the cause? For my son it is usually either high anxiety, sensory issues, difficulty processing what is being asked/happening for executive function reasons, or sometimes a combination of all of these things. Sometimes this will look like a full panic meltdown with lashing out as one might expect, but sometimes (remember I said it may not look like panic to you and I) it can seem to come from no where to those around. A simple example is my son got in trouble once for spitting in a teacher’s face once. He explained later that her breath smelled really bad. He has a very sensitive sense of smell and smells I may not even notice will make him gag and throw up. The teacher in his face made him feel sick, he panicked. In the moment spitting in her face was the most efficient way to make the smell stop. It worked, she backed up. So, you are likely on to the right answer when you say he is in fight or flight. Explore. Ask him. Do not just let the school report a list of your son’s “bad behaviors” to you. The “behaviors” are nothing more than a sign something is wrong. Be sure they are telling you what happened before. If you are not happy with the detail they give you ask the school to do a Functional Behavioral Assessment. This is your right as a parent. If you do not like the one they do you have the right to request it be redone by someone of your choosing.
      6. What can I do? First and foremost keep telling your boy how much you love him because I guarantee he feels terrible about himself. Next, one of the biggest requirements we have with our son at school is “No power struggles” This is a tuff one because it is a paradigm shift from the adult/child model we all follow of “do as I say because I said so”. But, we find that if it is time to go to gym class then my son really wants to go to gym because..well…..it’s time to go to gym class and that is what he does, it’s on the schedule. So if he balks at going, there is a reason. To cajole him into going anyway and get into a power struggle with him results in him feeling backed into a corner and panicking over being pushed into something he is not ready for. Instead he needs to be given the leeway to not go or go when he is ready. While this sounds to many like we are teaching him that he runs the show and his every whim will be indulged the truth is that he doesn’t take advantage of it. He will take a few minutes extra to gather himself and feel calm and then join the rest of the class in gym. He has never once used this as a way to do whatever he wants.
      Big hugs to you, mama, I hope there is something here that can be of use to you.

      • so i just got off the phone with the school again today. out of the blue we had another outburst of violence. this is after months of wonderful reports. your advice is still good to hear and i’m reading it again and again and sharing it with my husband. i wish it was easier to get the school to be on board. i want to go back and see what happened to push him to the point of such a reaction and make them see that he was reacting to feeling completely out of control.

        i’m finding that these moments are the hardest, when things have been amazing to then be smacked down. to be hit with worry and fear and your heart hurts because you know that this wasn’t all on him. you hurt because you weren’t there to mediate the situation and you know that this stressed him out and that he tried to do things to fix the situation but that they weren’t the “right” things and just landed him in bigger trouble. and i feel powerless. that no matter what i do, people are still going to push him beyond his limits (and not in a good way)

  138. Does anyone have suggestions re. 1st grade and helping your spectrum kiddo to do the work? My boy will be 6-1/2 next month, is in an inclusive classroom. He has strong language/academic skills, but weaker social skills.

    We’re having his 1st ARD of the year tomorrow and I had a chance to talk with his OT (she is at another school and won’t be there tomorrow – the rest of the team will). His big challenge right now is finishing his work in class, and checking out attention-wise. He CAN do the work (when he does it, he does it very well), but he just seems to drift away from it after starting it. (Example, writing a 3 word sentence. He needs direction to write the 2nd and 3rd word. He CAN do it, but he doesn’t.) He’s the last kid to move when it’s time for circle time, last kid to get stuff and do the next thing – he’s not cluing in to what the teacher is saying, and he’s doing things when he sees the class doing them.

    He’s a sensory-SEEKER, and as far as we know he doesn’t have sensitivities (none obvious, anyway). Everyone seems to be onboard re. supporting my guy and finding his “sweet spot” re. how he learns, etc. But I really want to help as much as I can.

    We’re not sure how much is behavioral vs. sensory – sometimes they get tangled up with each other. The OT and Teacher are working on a sensory diet for him (but have to balance filling sensory needs vs. accidentally rewarding something that’s behavioral and not sensory.

    Part of the problem is I don’t see the behaviors at home – he’s home to play, etc. He does his homework with very little prodding. It’s on the computer so he can concentrate on it, and he enjoys it, not like paper/writing work in school. We did work on writing over the summer, just a few times each week. It wasn’t his favorite, but he did it, and he improved.

    Home is just not like school, atmosphere wise. I KNOW it’s just 1st grade, but if I can help him understand the what, and the why and find the motivator to help get what he needs to get done happening at school, that would be great. Following directions and getting your work done is the cornerstone of school at this point, so I’m having my little mommy freak-out.

    Thanks!

    • Hi PK-
      I think we’re in a similar situation over here. My middle daughter is also in first grade, in a regular classroom. While she is very smart, keeping on task and following multistep directions are a real challenge. We have a TSS (a one-on-one aide) who goes to school with her to prompt her and help her follow along with the rest of the class. It works well for her. It keeps her in the class and gives her the assistance she needs. But she is tired by the end of the day. It seems she has considerably more difficulty at the end of the day, trying to settle down after lunch and recess. We have been discussing sensory breaks for her to help her organize herself before she has to settle back into the desk. One thing that has worked well in the past was a fidget belt I made her. It gave her the input she wanted on her hands without her having to jump up and flap in the middle of her spelling test. (Our team is unders strict instructions from me to not correct or redirect her stimming, but just supplying the fidget give her a different avenue to get that input without breaking the other kids’ concentration – win-win. ) and it does help her stay focused a bit.

      Is there any chance that you would be able to get a one-on-one aide for your son? Even if just for a short time to help with the huge adjustment into first grade. It might help to get him into the habit of staying focused at school. It sounds like he is capable of doing the work if he can do it at home, he may just need a little more help at school to transfer the skill.

      My daughter’s kindergarten teacher told me yesterday that this first month and a half is the hardest adjustment for all of the first graders (not just ours.) She told me because I was having my own little mommy freak out and actually debating home schooling her because it just seemed to be so hard for her! But honestly, if it’s hard for a “typical” first grader, it’s gotta be brutal for ours. See if you can secure a little extra help for him at school. Because learning to write is such a big part of first grade, I doubt they’d let him use a computer, but you could talk to your OT and see if it’s a possibility if it would help him….

      I guess I don’t have much solid advice, except to say, “me too.” Hang in there. My nine year old has Aspergers. He did get hang of the school thing after some bumps in the road. It will get easier once he gets used to the expectations.

  139. Has anyone found successful strategies to help an elementary schooler with perfectionism and handling expectations?

    My 6 year old with PDD-NOS is doing really well in 1st grade, BUT he has high expectations re. his behavior and equates not making the best choices all the time with “being a bad kid” (his words) : ( He even said last night that he didn’t want to go to school – I guessed it was because he had a “yellow” day . His school has color charts for behavior and you move up/down colors – best is blue, next is yellow – so he did FINE, but it wasn’t BLUE, so he was down on himself.

    We also had a meltdown at a birthday party because of a party game – pinata (see blog for full details). He believed that HE had to be the one to break it because that’s what you’re “supposed to do” for the game – in his words, “he didn’t do it, he wasn’t the strongest. He was SO SAD”.

    He recovered pretty quickly and had a great rest of the party, but mom totally didn’t see this coming re. games, expectations, performance, etc. I’m thinking of creating some social stories re. this – “life” skills, attitudes – but would LOVE any other ideas that have worked for your perfectionist kiddos.

    He does come by the self-criticism honestly, because mom and dad are also introspective and self-critical. Not in front of him, but personality-wise.

    Thanks!!

    • PK, I totally understand what you are describing. My husband and I have perfectionistic tendencies as well…but our youngest on the spectrum (she is 8 and a third grader) is very simar to how you described your son. When I read about issues with various children, I watch for someone, anyone, to mention this particular issue. It may not seem like a big deal, but it is a huge challenge for us. My daughter is also very sensitive to criticism, or even PERCEIVED criticism. Until this year, she had been able to maintain high grades without much effort. She is also ADHD and some OCD along with her ASD. Her biggest issue is usually lack of focus and the need to move, move, move…and talk. However, this Common Core business is kicking her booty. She is coming home with D’s and F’s. This is NOT helpful for a perfectionistic child. We have had more than one evening full of meltdowns and misery over homework and studying. I don’t know about your child, but ours has “verbal perfectionism.” If you repeat something she has said, it had better be verbatim. If I try to help her with her homework, and if I do not use the exact terminology of the teacher…not good. She has also has the expectation that everyone else remembers everything perfectly, the way that she does. When she has something to say, she wants/needs to say it immediately, and she cannot tolerate being told she had to wait. I know that this has gotten better over the last year. I will have to give some thought to some of the specifics we have tried to implement. I know that this year, they are finally doing social stories with her. I am not sure if they are helping, or if she is gaining skis on her own. I will think about this and get back to you.

  140. Hi all,
    I am not sure if this is ok to post here, and if not, feel free to remove it. But, I am a teacher for students with moderate to severe autism and am in a contest to win school supplies that they desperately need. I would greatly appreciate it if you could take a moment to click through the link, like Classroom Direct, and vote for my photo. Thank you so much!

  141. This isn’t an emergency issue, but I’m feeling ambivalent about it and I’d love some input. First the question – How involved should I get with Autism Speaks (what are alternatives if not?)

    Background: I came upon Autism Speaks in the last 2 years. I’ve not attended any walks yet. I did some volunteer work at their local office and the people there were great. I worked on a committee and same thing. I attended an award lunch and there was not a cure focus at all – more a “how does it come about” and “how can we help” from the people there. I haven’t run into the fight/cure, etc. rhetoric that I’ve heard about – it seems this attitude has shifted, and may have been in the past, at least at the levels I’ve interacted.

    I know from reading several blogs that many autistics really aren’t fans. I’ve read Jess’s stance as well and it also makes sense to me. My son is “quirky”, but his health has not been impacted, he is able to communicate. I am not “cure” oriented, but am more neurodiversity/services to succeed/reach out to understand oriented.

    I would really appreciate feedback, thoughts, etc. on this, as I want to support research and support systems for autistic individuals, families, etc.

    • PK, despite my differences with them, I also acknowledge that Autism Speaks does some wonderful work, both in research and in political advocacy. And I think that the more of us who eschew the disease / cure model of autism who continue to engage with them, the more truly representative of the community they will continue to become. For alternatives …

      If you’re not familiar with ASAN (the autistic self-advocacy network), I highly recommend checking them out. They are extremely active in grass-roots advocacy and are eager to have allies supporting their efforts. In addition to the ASA (autism society of America) and the ARCs which now make a concerted effort to support our community, there are any number of local support / advocacy groups in different areas. Here in Boston we have the Flutie Fdn, which does wonderful work and supports community services, which are desperately needed, along with the Autism Alliance of MetroWest and AANE (the Asperger’s Assn of New England). I always suggest googling (your city) autism + support to see what comes up and taking it from there.

      Hope that helps.

      • It does, thanks! I clearly understood where you were coming from re. them. Not having done a walk, I hadn’t really come up against the disease/cure thing (Temple got me first LOL). I just want to support groups that fit the reality of my child/family and many of the autistics I’ve come across (thanks to your blog :) I’ve emailed ASAN locally but haven’t heard back – I think I need to find the “right” department there, unless you have thougths as to who or what area to connect with.

        Thank you again for your blog, and for sharing your experiences. It really has helped me find a voice and look at the world in a different way. Things just “open up”, you know?

  142. Hi,
    I am at a complete and utter loss as to how to handle my son’s school. He is in third grade, has Aspeger’s. Had a horrible year last year with bullying. We took many proactive approaches to try to help ensure this eyar would be better for him. But once again, they don’t get it. His main struggle is socially and this is the hardest for him at recess. We specificed in his IEP that he have an IPSP at recess with him and not a general lunch aide. He has a daily log, and instead of them recording their recess observations, they ask him, and write down what he says.. Horrifying. He suffers from Cyclical Vomiting most likely from migraines or an undiagnosed/specified seizure disorder. His neurologist believes stress is making this worse. I went so far as to last week I sent his Special Ed teacher a copy of wording from teh Asperger’s Assocation of New Englands Website, ways to help him at recess.
    Again, nothing has changed. Last night my husband and myself composed a letter, which is below, that we sent to his Special Ed teacher, Classroom teacher, Principal and Guidance Counselor. No response yet. I feel like we are talking to people that just DO NOT get it. I am at a loss as to what to do next. We requested a meeting. But we have met many times before. Do we get an advocated, special ed attorney? Any support or guidance would be appreciated. We are feeling pretty low at the moment.

    We are writing to express our disappointment in how recess with X is being handled. X’s log today stated that he played with different friends for both recesses. This was not the case. X spent the first recess chasing someone he considers a friend around who never responded to, or acknowledged him.

    Anytime we gently try to approach x about how recess was today he has a completely uncharacteristic nuclear break down. We can assure you, as x’s parents, he is internalizing these feelings of rejection. What is the purpose of his daily log if we are not receiving accurate information?

    This is not a healthy situation for him and X absolutely deserves better than this. The part that is the most upsetting to us, is that he still cannot identify social ques of when someone wants them to leave them alone. What if the child got frustrated by him. He continued to follow a child around who clearly wanted nothing to do with him. Where was his recess aide? Who was giving him the social prompt that he should try something else.

    Last year we were adamant that he have a recess aide who would help facilitate recess activities. He needs someone to give him the social cues that he does not yet have. Everybody agreed at his last IEP meeting that this was a necessity. What exactly is his aide’s role at recess?
    Is his daily log being written from her perspective or from what X is reporting back when asked? We are not helping him by not giving him the support he so greatly deserves at recess. I have heard several times that X has a dream aide. That’s great, but again, what is her role? What plan is in place for him at recess? We need a solid plan. We cannot let him try to figure it out day by day. X does NOT have the tools to do this. Although X does not show that he is upset at school, I can assure you he is internalizing this. It is not fair to him that this continue. X has reported back that his aide is sitting on a bench at recess. We were under the impression that the reason he had a special ed aide and not a regular recess aide was to help him facilitate recess activities. We are extremely frustrated that he is struggling at recess. As his parents, we hope you can understand our frustration and concern for X. We truly do not worry about him at school, except at recess.

    We are respectfully requesting a meeting to discuss how we can make recess better for him.

  143. It sounds like time for an advocate. An IEP is a legal document that they are legally bound to follow. If they are not following it, they can get in legal trouble. If they seem to have the idea that the IEP is inconvenient to follow, so they are not going to bother, they need a wake up call.

    John Mark McDonald
    scintor@aol.com

  144. Thank you. It does seem like it is just inconveinent. We sent his special ed teacher information directly from the Asperger’s Assocation of New England’s website on how to help children at recess. It all just falls on deaf ears.
    Thanks for your comment

  145. Hello all – this isn’t for me, but for my nephew, age 30, PDD-NOS living at home. He was misdiagnosed back in the day, teased miserably, bullied, etc. as a kid (he lived in a small town that was the opposite of supportive), lazy school district (they’d rather pay insurance to protect against lawsuit for not providing services than actually provide the services). There’s just a mess of stuff around how he got where he is in his head today.

    He wants to be independent, and is getting help from an adult autism assistive group in that direction. But he’s in denial about his autism. He’s “fine”, it’s “not a problem”, etc. As his aunt, and the mom of a 6.5 year old autistic child, I’m trying to be an “unobtrusive resource” – sharing info, talking about how things are different, etc., with his mom, and with him when it seems appropriate.

    He attended some sort of autism support group a while back – not sure if it was families, parents, etc., but he told his mom that everyone there was “worse” than he was and he didn’t fit in. I would love to help him find his way, get comfortable with himself, find a place where he feels he fits. But he’s 1000 miles away, in a different place in his life, and partially in denial.

    Has anyone dealt with something like this? Do you have any ideas on how to “help without helping”? Or do I just be present to listen whenever he’s ready?

    Thanks so much!

    • Hi PK.

      I don’t know what would work best for him, but I can tell you what I’ve had to work on in order to “accept” the diagnosis. First: “do I just be present to listen whenever he’s ready?”….yes to this. You can certainly offer constructive feedback, but at the end of the day, just being receptive to his feelings and letting him know you acknowledge how he feels…that can be huge. Also, it will let him know that he can speak freely with you. It’s likely that he will just shut down around those who insist he accept ideas he’s not ready for.

      I was diagnosed with Aspergers at the age of 30…this left me feeling extremely bitter, angry. When I researched the diagnosis online, I just heard how great it was…most of the stories were about math geniuses and savants. This only made me feel more bitter and alienated. The “positives” never clicked for me.

      Ultimately what helped was viewing the diagnosis…not as a label I had to accept…but as a toolbox. I tended to view my social issues as problems to be solved…and once I began to see the spectrum terminology as “tools” I could use to solve those problems, I had an easier time embracing them. I didn’t like being told how to react, how to feel about being on the spectrum. I still don’t. I did like gaining the ability to more effectively comprehend the nature of my social deficits…and then developing coping strategies to manage them.

      So, when you feel he is ready, you could suggest that he use the terminology and labels like tools in a tool box. If they don’t fit who he is, great…but they can still have use-value. He can just pick them up every now and then, use them, then put them away.

      To put it differently: once he has social goals, he can just temporarily use diagnostic words as a way to achieve those goals. “I had a bad interaction, and it’s because autism/Aspergers prevented me from seeing this or that bit of social data. Now I know, I can try to pick up on it next time.”

      Viewing the labels as tools 1. gives him more control over them and 2. gives him time to sit with the words, perhaps get used to them.

      Again, this helped me, I can’t say for sure that it will help him. I just know I too struggled with accepting the diagnosis, and it’s never been easy for me to just readily embrace the concept of being part of a community. I get that he wants some distance, and that’s okay…hopefully in time he can find a relationship with these terms that will be more comfortable for him. Let me know if you have any other questions, good luck, this is such a tough spot and difficult to navigate, I know he’ll appeciate your concern and caution.

  146. Some people are more comfortable dealing with falling under Asperger’s rather than autism. I was undiagnosed as a child. Back then, the only people who got the autism label were institutionalized children. I found Asperger’s syndrome back before it was in the DSM and was comfortable with it. As more was learned, I could accept that Asperger’s and Autism were related, but would not apply it to myself. It took some effort but I have finally become comfortable with labeling myself as autistic. I know of others who will only admit to being part of the BAP (Broad Autistic Phenotype), which means that they will admit to having autistic traits and limitations, but not the “disorder.”
    My advice would be to ask him where he feels like he fits in the community. Encourage him to look for people and groups online that feel comfortable to him. Many local groups tend to be very focused on a specific subset of the spectrum which does tend to make others feel left out. (I’m the token autistic adult in my group.)
    Above all, be gentle with his reluctance. Offer support and resources and then let him pick his own path.

    John Mark McDonald

  147. I’m having a rougher time than usual with something. How do you reconcile being happy for someone else’s accomplishments while sad about your child’s lack of those same accomplishments? It is easy to view each child as an individual when not forced to see them around other children (play dates) or read about other children (family email updates, friends’ facebook posts, etc). However, when reading about a 15 month old doing things your 30 month old child has just mastered, is still working on, or has yet to master, it is really hard. I am happy for them and know by now, with my 3rd child, that each child develops at his own pace, but it is overshadowed by my feelings of longing for those same accomplishments for my boy; it’s hard to separate the two. I know everyone faces challenges and try to remind myself of that when I feel this way, but it can be really hard. I feel guilty for the feelings of jealousy, because I AM happy for them and their children but it’s hard to view their accomplishments through the same lens as I view my child’s accomplishments.

    • I’m not sure that you can, or that you even have to. I have struggled with this, and still do. For a while I almost had to practice being happy for those other parents – little things, “liking” a picture on facebook (you know, where they can’t see my face as I force myself to hit the button). It does get easier with practice… But more important than being happy for them, is being happy for you. Being happy for the perfect little gift you have been given and how very unique this journey is. It takes time. It takes practice. But sometimes, withdrawing just a little from everyone else and putting a little more focus on all the little gifts that your child is giving you will help to get you through it. My daughter (age 4) can’t run, can’t walk very far, and can’t speak. But she has this amazing way of just being, just sitting and absorbing the “small” moments, like the leaves dancing in the wind. And she makes other people stop and see it too. Just by being. I don’t know any “typical” 4 year olds who can do that. So that helps enormously. Because it’s harder to be jealous when you recognize that you already have so many blessings. So their kid can run, but they’re missing out on something else. So yay for them, but double yay for us. Hugs.

  148. Anyone have experience w/Interoceptive sense/pooping & peeing? I came across this information and my mommy radar started pinging, since my son has some minor issues re getting to the bathroom on time/ not knowing the difference between passing gas (a big one) and pooping (a little one). He actually potty trained pretty well, but it seems like he’s often “last minute”, or can’t tell when it’s a little poop vs. a big “gas”. And he stays dry at night maybe 50-75% of the time during the week. He’s 6.5 years old.

    It isn’t as “bad” as having “real” accidents, but he’s always bummed out when it happens. Anything we can do to make him more comfortable is great. I was hoping we could get off the miralax, but if it helps him manage his bowels, I’ll stick with it.
    I also don’t want to blame him for something he can’t control, but I don’t want to “let it slide” if he’s just doing the kid thing of ignoring his body because he’s enjoying what he’s doing/watching/playing. How the heck do you tell the difference?

    I have e-mailed his OT and other members of his team at school to see what we can do. It’s not a problem at school, and only a minor problem at home, but I want to get on it ASAP so we can manage it before it becomes a larger issue. I also left a message with his pediatrician to see how familiar they are with this.

    Any idea who I can talk to re. getting help with this? Has anyone had experience with this? Any experience helping your kiddo better regulated in this area?

  149. I apologize for asking semi-regular questions, but the parenting village here is great, and I appreciate your help. Sorry this is long.

    What has been your experience with our kids on the spectrum and games/competition/school related competition-prize things? Here are two examples, and I would love any feedback you might have on this:

    1) e-mail from teacher (they have rally’s sometimes and he does ok with them as he’s a sensory seeker). Her message – “The teachers had a contest and only one could win. The winning teacher got 24 pieces of candy for her class. Well, I didn’t win and it made Daniel very upset. He wanted that candy so bad. It all turned out okay because he won candy for his royal ticket that he got from doing IXL math. However, it won’t always be that way. So, let me know what you think. :)

    2) We went to a birthday party and it was the first one with actual party games. One was the piñata. He knew the rules were, you stand in line, swing the stick and break the piñata and the candy comes out. I took for granted that he understood that everyone does that, you don’t know who will break it, and if you don’t break it, it’s no big deal. For him, the goal of the game was HIS responsibility. HE had to hit it, and break it, and if HE didn’t he was doing something wrong – in his own words, he “wasn’t strong enough” and “didn’t do it right”. He got SOOOO upset by this. And since I didn’t see it coming, I couldn’t explain it before hand. He bounced back, but I honestly think the competition thing doesn’t quite make sense or isn’t comfortable.

    3) Here’s another example – he likes to play “CHASE”, better than “TAG”. :) This cracks me up a bit because to US, it’s the SAME game. But to him, it’s the chase that’s fun. The whole being “it” thing doesn’t have the same appeal as the fun of running, catching the person, and taking turns running/catching.

    We do play boardgames sometimes, but we all get home late from school-aftercare/work during the week so not as often as I should. What can I do to help him understand games? To help him not feel like a failure when he doesn’t win? Is it possible to find a healthy level of competitiveness, or a comfortable level of non-competitiveness for kids on the spectrum? Especially for boys, where it seems that it’s “expected” to be competitive. I’m not going to push him to be what he’s not, but I want to give him as many tools as I can.

    • Ok PK…. My son’s experience has followed a similar trajectory. Poor sportsmanship pretty much all around, clearly sees winners and losers, but not all the grays in between, makes everything (everything!!) a competition, sees it as personal failure if he or his team or his class doesn’t win said insignificant prize, title, bragging rights. Yes, it has gotten better with maturity. He’s still only 9.5, so he’s still not that mature, but it has become less frequent, less pronounced, and shorter lived when he has these whateveryouwannacallems. I have stressed that say, in his class of 22 kids, one kid gets the highest grade or runs the fastest. That leaves 21 other kids who didn’t win (or LOST as he must say) or were not the fastest or whatever superlative fits. Introducing the shades of gray is important, but so is letting time pass and seeing some of those rough absolute edges soften. It’s hard to wait, for both of you. It continues to improve with some mild backslides here and there. Fwiw, most kids can be crappy sports, some just hide it better than others. Patience darling, constant reminders that not everyone wins (most ppl dont!), and removal from situations as deemed necessary (not always at all) where the proverbial sh!t can hit the fan. Not every moment has to be teachable.

  150. Hi all- I am looking for some connections in Massachusetts. My friend is trying to get a diagnosis for her son and apparently can’t even get an appointment until May. I live in PA, so I’m not too familiar with the system up there. In addition, her son has services through the school district with an IEP, but they are not following through, so I was hoping someone could recommend a good (preferably cheap) advocate to help her out in that area as well. So a good diagnostician (we can use psychologists here, I’m gathering that is not the case up there) and a good advocate preferably in Southeastern Ma. I would be very grateful for any leads. Thanks!!

    You can email me if you don’t want to post names and numbers. (Just don’t laugh at the address, my hubby made it up. ;). )
    superbiologybabe@hotmail.com

  151. Hi all! We live in Fort Worth, where 3/4 of the year it’s sunny and clear. Then fall hits and the weather changes dramatically – low pressure systems come in somewhat regularly. I’ve noticed that my 6.5 year old son’s concentration takes a dive, he’s cranky, antsy, etc., usually the day before the system arrives. I’ve noticed it before, but since the summer weather is here for SO long, I almost forgot about it.

    Has anyone else run into this? Is there any way to manage it? I have a “hug t-shirt” that I had him wear today, and a kid strength asprin in case he has minor physical discomforts that he can’t pin down and describe to me.

    Thanks so much!

    • yup. changing barometric pressure wreaks havoc on our kids. in our experience, weighted blankets can help (weighted lap pads for school) as can extra excercise time to get the jigglies out. incidentally, time / seasonal changes are hard too – changing light, changing routines, more time inside etc … i’d love to hear other suggestions, particularly from those wo experience this themselves.

  152. He also may have allergies. Mold and pollen counts go through the roof at this time of year, which can leave you itchy, your head clouded, more difficult to breath, and other more common allergy problems. This was my nemesis as a kid back before they diagnosis 30 years ago.

    John Mark McDonald
    Scintor@aol.com

    PS (I’m in Abilene and my allergies went crazy a couple of weeks ago.)

  153. My almost 7 year old autistic son is going through what I think is regression with separation anxiety. I’m not sure as we’ve not been in this arena before, but what my gut is telling me. It’s breaking my heart to see what he’s going through. Any resources or insight you could share would be greatly appreciated. Thank you so much!

    • Can you give more specific examples of what circumstances are upsetting him? Going to school? And what is the behavior that seems like regression? And can you describe him a little?

      Both of my girls, both on the spectrum, are highly verbal and initially were diagnosed as Aspergers. They are very intelligent, but are emotionally and socially challenged. They both have severe anxiety. They also had a hard time with separation at that age. Interestingly, they both said the same things. They not only missed me, they were worried about me. They each had a fear that something would happen to me while they were away. It was less about wanting to avoid school and more about worry. I actually have books about worry to use with young children, and I did a lot of reassuring that it was MY job to worry about them! That was a hard phase, but it did get better.

      • Starting first grade 10 weeks ago put his world off-kilter. Anxiety sky rocketed, seen by lots more stimming, scripting, obsessing on things. Last week due to a gross oversight by the school he was left out of a behavior celebration that he’d been looking forward to for over a month & knew he’d earned enough tickets to participate. Him missing the celebration was the catalyst into regression, I believe. And the downward spiral of heavy sensory seeking, physical aggression instead of using words, sleep disturbances, picking at himself physically, hyper sensitive & just emotionally raw. He’s going to school for 2 hours a day & it’s taking everything he’s got to keep it together while there, then coming completely unglued the rest of the day. His diagnosis is autism, very high in some areas & significantly delayed with social/emotional.

  154. My daughter went into anxiety disorder at that age and refused to go to her class and had meltdowns every day in the office instead for over a month. Thinking back to my own childhood, that was the age that I gave up on people and relationships and became a loner. Lots of things happen as far as forming peer groups at that age rather than just one on one friendships that can make the entire social environment incomprehensible. My advice is that they may be old enough for starting to help with rule and consequence formation at that age. You will most likely be surprised at how hard on themselves they are if they are allowed to suggest rules, but if they have a hand in their formation, it just might give some stability to a world that has stopped making sense.

    John Mark McDonald
    Scintor@aol.com

    • My son is extremely rule oriented and definitely holds himself to a very high standard. The anxiety has been an ongoing challenge, but the separation part is new & related to the regression. We have not faced a regression until now, so are struggling to know how best to help him.

      • Regression is a term thrown around that is misleading. The implication it that suddenly their condition is getting worse and they have lost the gains that they have made. With people on the spectrum, what looks like regression is often their attempt to deal with a new challenge. Because we think in different ways than the general population, we often have to use work arounds to do things that others do instinctively. These work arounds take time and effort. Because of this, when facing a new challenge that takes most or all of our concentration, we no longer have the available resources to keep up the work around as well. This appears as if we have “lost” skills or social abilities, when in fact we have put them on the back burner until we have the free resources to use them once again.

        John Mark McDonald
        Scintor@aol.com

      • I didn’t like referring to it as regression, but didn’t have the verbage. This challenge has been traumatic. The way you describe it fits, a work around. Can you recommend any resources that will help us (parents) support him through this? Thanks!

      • Try talking to him about what is hard at school. Allow him to write or draw about it if he does not have the words or the memories are overwhelm him.

        The really hard part at that age is that he may not have the self-awareness or vocabulary to explain what is going on with him. In any case, a really helpful thing for people on the spectrum that are being overwhelmed is the concept of a safe place. A safe place is a place that he can retreat to. For many on the spectrum this is a space without bright lights, loud sounds or people. This allows time to regroup and sort things out when they are overwhelmed. Having such a place to retreat to both at home and at school as well as a set of signals (both verbal and non-verbal) that the adults around him recognize that allow him to go to this place when he needs to.

        Hope this is helpful.

        John Mark McDonald
        Scintor@aol.com

      • John – thank you for the support. We decided to take son out of school. Homeschool seems like it will be a better fit for him at this time. He’s been home for a week and just starting to relax a bit.

  155. Hello everyone! This is my first time posting to this community page, so here goes :) My 9 yr old son is on the spectrum and is mainstreamed. This year marked moving from elem. school to intermediate school. So, new school, new teachers, etc. And he does NOT handle change well. He has developed a giggling/laughing habit that is growing out of control. So bad that he couldn’t control it while taking a test and he received a “D” grade. The teacher and the autism teacher are asking me for suggestions for keeping it under control. Now, as a side note, I have had difficulty communicating with them this year and I do not feel that he is being supported the way he should. His IEP states that gets adult supervision thru out the day as needed, but he only has an aide with him in the morning (prior years he had an aide all day). I was told that they “are working on it” as far as providing an aide all day. In the meantime, I was wondering if any other parent(s) had a similar issue and how did you deal with it? I am now going to try to implement a reward system – not laughing out of turn in class for the entire day = 10 min. of time on the Wii after dinner. I’m at my wits end and completely frustrated at the lack of support the school is showing me and my son. IMO, I think he’s doing it as a stress reliever. I am also considering having an observer come into his class and observe him for the day. The teachers claim there is no pattern and they do not notice any triggers for the laughing. Any advice would be greatly appreciated! Thank you!

  156. Laughing can simply be a reaction to stress and not under conscious control. I often laugh when I am suddenly injured, which tends to confuse people. I also tend to laugh at odd times because I see something that reminds me of something that reminds me of something funny I saw. If I try to explain the chain of connections, I lose people quickly. If he says that he cannot stop laughing, there is a technique called paradoxical intention that can stop “the giggles.” What you do is try to laugh intentionally, and the unintentional laughter will stop.

    John Mark McDonald
    Scintor@aol.com

    • thanks, John! I will look into that! At times all it takes is for his sister to say something and it will throw him into a fit of giggles and laughter. I struggle with telling him to not laugh – I don’t want to take the joy out of life :)

  157. I have a question pertaining to discipline of an autistic child. She is high functioning but has begun spitting on her floor. She does this when she is mad, especially at her mom. Her mother has tried everything the doctors have recommended but nothing works. She is also stealing, whatever she wants she takes…cellphones, shoes, many things are taken from other students. She is in middle school and has no friends because she is mean and steals. Her mother does not believe in corporal punishment. Any suggestions?

    • Wow. I’m thinking you are a staff member? A family friend?

      Jess constantly reminds us that “behavior is communication.” Has anyone done a behavioral assessment to try to determine the triggers/ rewards for her behavior? It sounds like you are looking at this solely as a discipline problem, rather than a symptom of something else. Any child who “has no friends because she is mean and steals” is not a happy child. My heart breaks for her and for her mother.

      I’m not surprised that the mother does not believe in corporal punishment. Even if you believe in corporal punishment, I personally have never met a person on the autism spectrum who responded well to corporal punishment.

      I hope someone can get to the root of this and help this young lady.

      Margaret

  158. Hello, I had a questions about IEPs. I have a three year old son who goes to preschool. The school district is currently in the process of evaluating him so he can get more classroom support (he tends to get distracted and not follow the group/needs reminders to do things, etc).
    However, I am finding the IEP ridiculous. Here is a kid with tons of great skills and abilities (numbers, visual, spatial, memory, verbal)- and they want to make one of his IEP goals sitting still on the circle. They want to put a weighted blanket on him and give him a fidget. He is totally engaged during circle time, he just can’t sit perfectly still, and sometimes he jumps up and down at the end of a good song with excitement.
    They also want to give him OT because they think he seems ‘clunky’ at times. Um….is that a thing?
    I feel like his IEP is being designed to be easier on teachers. Who cares if he moves around on the circle? He protects his personal space so it isn’t like he bumps into people or touches them.
    I’m already annoyed and this is his FIRST school IEP.
    Anyone have any suggestions on how to deal with the school district? Isn’t there a more progressive approach to this? (He goes to private preschool that I chose because the class size is less than 10 kids and 3 teachers).
    Thanks!

    • Kristin,

      As a mom of older kids, I understand your confusion with your first IEP. I had my first IEP 13 years ago, and they still are the worst parts of my year. A few things come to mind:

      First, in order for your son to receive services/ classroom support, he needs to have goals. If he is advanced for his age educationally (which is sounds like he is), then the goals will have to be in the areas of communication, classroom behavior, fine/gross motor, etc.

      If you are going to be in school, being able to stay in your seat is, for good or for bad, a worthwhile skill to learn. Weighted lap pads and fidgets are awesome accommodations which address some of the sensory needs that cause kids to need to move. These types of strategies can be very calming and some kids love them. The point is to treat his need to move as developmental/ natural and not disciplinary. As long as they don’t think that he is misbehaving when he moves around, I don’t see where trying some things to help him sit for longer periods of time would hurt.

      Second, OT can be a very, very valuable service. Many of our kids have gross and fine motor delays or challenges. Getting OT early can help alleviate some of those challenges. The fact that they say he is “clunky” at times may mean that he doesn’t move through the classroom space or interact with pencils, scissors, etc. at the level of the other children. The school system is offering you a valuable and expensive therapy, which some people have to fight to get.

      Third, IEPs are hard. In order to get services, we have to focus on disabilities and weaknesses. School systems can’t justify the money and staff on services if the child doesn’t have weaknesses. But the laundry list of what’s “wrong” can be hard to hear, especially when you know what a fantastic kid he is, and how many strengths he has. Make sure that the present level of performance states your child’s strengths as well. And you can start teacher conferences by asking about strengths first. I often start IEP meetings talking about how great my child is, and all the miracles she has accomplished. Then it is my job to point out all the places where she still needs help. This is especially true now that she is older and is an honor roll student.

      The IEP goals are going to be based on challenges, not strengths. As long as the actual staff and administration of the school see the strengths, your son will do well.

      Good luck!

      Margaret

      • Thanks, Margaret, for taking the time to respond! IEPs are very confusing but I supposed part of our life now. I guess it is just going to take awhile to process it all. Thank you for your advice.

  159. Ok guys need your help. My little guy who is 5 is having major issues if im not around. Perfect example today we were at a birthday party at a water park. My husband and I stayed. Now what happen was I had to get changed then go to the car. Jacob was in the water with his friends and I explained to him daddy is right here im just getting changed and ill be back in a bit and he was fine. Next thing I know I get a frantic text from my husband he is in a full blown meltdown cause he needs me. It was so bad he was hitting my husband and the life guards thought that perhaps that my husband wasn’t his father just a stranger trying to take him! It was mess. I came running in as fast as I can and jacob was yelling I was worried about u mama! I need you! I dont know what to do he has major anxiety if I try and go out if its dark so our every four month “date night” is a date afternoon..he needs to know where I always am even if I run to the bathroom he has to be right in there with me. I dont know what to do im getting extremely burnt out as im a stay at home mom that really could just even use a 1/2 nap! I feel horrible for my little man and my heart breaks to see the terror in his eyes. Nobody can put him to bed but me does anyone have any ideas what I can do to help him? Im so worried if I got sick or my daughter was sick or hurt and I had to stay at the hospital I dont know what Iwould do!!??

    • Tonia,

      First of all – big hugs to you. It is so exhausting and you need to take care of yourself. Do you have an autism specialist at school or a behavioral therapist? Perhaps they could help you set up a reward system for being away from mama for (very) short periods of time, working up to longer? Perhaps you could start with the bathroom, and ask them to help you find a way for your son to be outside the door while you are inside? I have an older child with severe anxiety, and I know what a difficult balancing act it is and how painful it is to see them suffer. One of the hardest things for me was finding out that I needed to be less reassuring – that the more accommodations I made for my son’s anxiety, the more I was strengthening the anxiety. Basically, by constantly reassuring him, I was sending the message that there actually was something to be anxious about. I get anxious about the prospect of him getting anxious! I wish I had gotten professional help for my son’s anxiety much, much earlier in his life.

      Please remember that you have to take care of yourself or you can’t take care of your little ones. The oxygen mask cliche is still true. So many of us have been in your shoes; you are definitely not alone!

      Margaret

    • This sounds like he has realized that people can leave or die and never come back. This can create extreme anxiety in a world that he cannot predict and can evolve into anxiety disorder. Since this is hitting fear at the deepest level, words will not make any difference. The method that I might work is to let him set “rules” that allow him to believe that you will return. Something like “If I hold your picture, you will come back.” It is very important the he sets the rule and sees that you come back. This will allow the world to become predictable and stable again, and his anxiety should ease.

      John Mark McDonald
      Scintor@aol.com

  160. I would really appreciate any advice to give to a mother of a teenaged girl with Aspergers who is struggling with what looks like it may be depression. What to recommend to the mother and the daughter in the way of reading or resources? Anything to give hope for her and her mother that she can survive this time of growing awareness of herself and her differences that is weighing really heavily on her?

  161. Hello Diary readers. I would LOVE Input from AUTISTIC people, and the people who love them, about the challenges faced when going to the doctor. My husband is in medical school. I read a blog post a while back from an autistic blogger who had a very hard time at doctor visits with communicating issues and processing the doctor’s responses. What do you think would be useful for doctors to know when dealing with autistic patients? I don’t know if I can get this info to the “right” people but I’m going to try. Thanks!

  162. FROM A READER PLEASE HELP! THANK YOU!

    Hi, I am a Mum of two boys (one on the spectrum) and also a teacher aide to three kids with various disabilities. One of the boys I support has extremely complex needs. Every day we complete a communication book so that he can ‘tell’ his family about his day, he is non verbal.Basically the idea is he chooses pictures and glues them into the book. Due to his variety of need this is extremely hard for him and I dont feel he gets enough input into the process.He has an Ipad that he is very competent with and I would love to change his comms book to an app on there. Ideally we need to be able to create a page template that he can then choose,drag and drop pictures onto. We need to be able to create our own pictures/photos and export it by email to home as the Ipad is school funded and has to stay there. I have tried various journal/diary apps but a lot are just too complicated and ‘busy’. Does anyone have an suggestions? Thanks a lot.

  163. My son has sensory processing issues and he likes to be tucked in tight when he sleeps. I found a woman on etsy that makes lycra sheets, they go over the bed like sleeping bags and keep him all tucked in. He loves it. I know she makes them for kiddos that have autism too, so I’d thought I’d share the link. Maybe this can help someone else.

    https://www.etsy.com/shop/skweezrs

  164. Ok so I am a preschool.teacher.who has been teaching at the same place for about 8 yrs. I have seen many kids come through my classroom and have hd quite a few whom I have had concerns about. However there is one particular child who I am struggling with. He clearly.has issues and I suspect he is on the spectrum. We had him evaluated through the local public school but we got nothing. Inthen stepped.up.to.the plate and started doing research.I made visual aids for him in areas he struggled.with and he has had success with these. However he continues tonstruggle.in areas in which I can not help. I need advice on what to do next. He strugles with routines and has a hard time if something changes( ex. At lunch the other day he was not able to.finish his lunch. He had a sandwich,, apples.yogurt and dried fruit all.out in front.of.him). The linch bell.ring and.he still.had not had most.of.his.lunchand he started having a hard time. I.made a deal.with him, the the next day we would only take.out one item.at.a time eat it and then remove another item.from.his lunchbox to.which he agreed to( I.usedd.to.do.this with him and itworked like a charm,.however a couple.of.others stopped.that this.yr). The next day he had out his apples and was starting to take out other things. I stopped.him.and said remember what we talked about yesterday, his response was.oh.yeah. I started.putting his stuff back into his lunchbox and left out his aapples. He started to.freak out because he wasn’t supposed.to.eat his apples first. I calmed.him.down and told.him.it was ok this time( he usually.eats his.sandwich first and its a rule at school).
    Yes this time I was able.to talknhim.through bit there are other time I.am.not able to. What do.I.do

  165. Thank you for your searing honesty. Found this today Thanksgivong day from a friends facebk post. My son
    Is now 19 but the journey and his challenges and our families challenges remain. There has been amazing growth overtime which your blog helped me remember today. Thank you.

  166. Is anyone familiar with teamPBS.com? Positive Behavior Supports Corporation – family member is sending this to me as a job lead or something… I’m going to check out the site, but am interested in others’ experience with them, if any. ABA is mentioned, which is a red flag for me if it’s “old school”. Has anyone heard of them or dealt with them and/or experienced the support they say they offer?Thanks!

  167. I hope everyone is having a wonderful holiday! A couple of questions:

    1. Does anyone know how to transition into a career of Autism Employment Advocate? I’d like to work to help companies/autistic people connect and benefit mutually.

    2. Does anyone belong to LinkedIn and what do you think of joining the Autism Speaks page and answering questions from a neurodiversity perspective? Basically spread the word about autistic adults for others to find and learn from?

    Thanks!

  168. Just wanted to share this awareness opportunity-I was on linkedin and this link was mentioned with this comment by L. Scott Lissner, Ohio State University ADA Coordinator: “Wouldn’t it be cool if there were a bunch of submissions be kids using Assistive technology – spread the word… http://www.whitehouse.gov/FilmFestival.

  169. We live in florida my child has a.d.h.d mood disorder an odd. We have him on healthy kids. Things have become really bad the therrealist an drs say we need a behaviorist at home child is in day treatment setting at school but doesnt get the help he needs cuz of insurance direct words from dr an therapist. They say we need medicaid. We applied for him an myself I have disease that qualifies but I am unable to get medicaid also.we are both denied only because when husband works overtime we are over limit. No one even lawyers say they can help meanwhile we struggle every day and hoped obama are would help they have not.

  170. Hi! I work for In Home Behavioral Services and one of my moms asked for resources to help her explain/describe/talk about autisim to her 8 year old Autistic daughter and 10 year old step brother. Can anyone recommend favorite books/materials/websites on this subject?

  171. Thank you for all that you do Jess. I have been reading and reading. I am trying to get my feet wet. I set up my account and this is my first time posting. Sorry if I mess up. Once I click “post comment” there is no turning back.

  172. Hello everyone. I need your help – do you happen to have a favorite post – yours or someone else’s – that speaks to the issue of silencing and very clearly defines it? I understand what it is, but can’t quite put it into words. I’m looking for something that non-autistics will get because I want to repost on a forum that would benefit from this information. There may be some that will refuse to see their own behavior, but I feel I need to share this for the others that will nod and say “oh” to themselves, then make changes in their interactions. Thank you for your help with this.

  173. I have a question about “screen time” and Asperger’s. My 9yo Aspie daughter tends to go through “stages” with her obsessions …sometimes it’s Barbies, sometimes her American Girl dolls…right now it’s Cut the Rope. I know that this is her escape so I try not to limit her tooooo much, knowing that by next week it may have passed and she will be playing Barbies all day. But it’s hard with the other 2 kiddos in the house…I don’t want them on the computer or iPod all day. My question is…do your limit your autistic kids’ screen time (knowing that that’s what parents are SUPPOSED to do?) or do you let them indulge as long as they are getting homework, etc done? Thank you! I trust the opinions here more than if I were to ask the dr, school psych lol :)

  174. My daughter 16yo is suffering from panic attacks, anxiety and depression. We see a therapist but it’s so hard to watch her suffer. Any advice is appreciated.

    • Are you interested in finding out about nutritional approaches that may help? My 11yo experiences anxiety, panic and depression (all of which quickly turns to aggressive behavior) and I found help for him via whole-food supplements. We’ve also shifted how we all talk to each other, along with the supplements and, for us, both of these have helped.

      Please reply and let me know if you would like for me to expand on this advice.

  175. I am almost afraid to ask this…. do any parents have their children wear ear plugs in certain situations? Such as a school assembly? I have a 7 year old who loves to participate and doesn’t want to miss out on the fun but then gets way too overwhelmed by the noise. Before I Google this, I thought I’d come hear first to ask you.

    • Never be afraid to ask anything here :)
      Yes, my 2nd grader uses headphones at school assemblies or anywhere where the noise level is too much for him to concentrate. He’s not alone – several kids have headphones on during these events. I’d work with your child to see what he/she is most comfortable wearing to block out the loud or background noise and go from there. Good luck! We bought our headphones on amazon for $13 or so.

  176. Hi LynnPaige,

    Yes, my son in 1st grade uses them. We have small silicone ones on a rope that you’d find in, say, the outdoor equipment/sporting goods section (I would assume for shooting?). We use those for things like parades and outdoor events. Then at school they have more proper noise cancelling headphones for assemblies. I don’t know how we’d manage without them.

    Hope that helps!

  177. Does anyone know of a special needs photographer in the Miami, Florida area? One that is familiar with autism and does out-of-studio photography? Thanks!