what my daughter is not doing

*

DSC_0420

Captain Brooke 

-

My daughter is doing well. The beginning of her fifth grade year has been smoother than I ever could have hoped. Yeah, I know I’m tempting fate by saying it out loud. Screw it. I’m shouting from the mountaintops — MY  KID IS DOING WELL.

Her language is blossoming.

She asks questions about her environment. She asks what things mean. She asks, “How did that happen?” and even, sometimes, “Why did that happen?”

She is engaging with others and finding ways to make herself understood. Her conversation is sounding more and more natural — less forced, less scripted. OUR language as a family is following suit.

We are more relaxed. We are less afraid to venture out, to go to new places, to try new things. It doesn’t always work. Sometimes we go down in flames. But it’s getting easier to try.

And people are noticing. Both here on the blog and in our live-and-in-the-flesh life. They are seeing the tremendous strides she’s making and offering up praise and commentary. In some cases, what they’re offering is some really kindly intended yet wildly inaccurate assessments of her progress that they have no idea are serving to perpetuate some dangerous myths about autism. And I need to address them.

This is what I’ve heard.

“What an incredible recovery!”

To recover is to regain something that was lost or to heal, as from a disease.

My daughter has done neither. While she regresses periodically due to dysregulation from stress, she does not have Regressive Autism. She did not lose novel speech at a certain age; she never had it. Instead, she has, over the years, been finding access to it, creating pathways, learning to translate her thoughts into words, essentially becoming fluent in a foreign language, step by step by purposeful, painstaking step. As she broadens her ability to communicate her needs, she is able to more effectively manage most of the other challenges that autism presents for her.

She does not have a disease from which her body is healing. She does not have gut problems nor an overload of heavy metal in her system. She does not have anything that time in a hyperbaric oxygen chamber is going to ‘fix.’ My daughter isn’t sick.

Her brain is wired differently than the average bear. It just is. As such, her development is not linear. It’s not simply a slower journey along a prescribed path. Instead, it’s a walk down a whole different road that’s really not a line at all, but a prism – a constellation of challenges and talents that make her who she is.

I’ll say it again. My child is not sick.

She’s different.

The word “recovery” is not remotely applicable to her progress.

“She is kicking autism’s ass.”

No.

No, she’s not.

Autism is not cancer. Autism is not something that we are working to excise from her body. Autism is part of the framework of who she is. I’ve said this too many times to count, but I’ll say it again: Autism is pervasive. It’s right there in the definition – Pervasive Developmental Disorder. That means that it pervades EVERYTHING she sees and tastes and hears and smells and feels and processes and, yes, thinks. Everything that she interacts with, everything she experiences passes through the filter of a brain wired by autism. As such, kicking its ass means kicking HER ass. It doesn’t make sense.

I heard a story at a conference I attended a couple of years ago about a young man who put a gun to his head. A therapist had thought that some off-the-cuff CBT (Cognitive Behavior Therapy) might help him understand his challenges, so she told him that his autism was a ‘bad guy’ in his head who wasn’t letting the ‘good guy’ (presumably his nonexistent “non-autistic” brain) do the things it needed to do.

So he put a gun to his head.

Because as a literal thinker, he thought it would be a good way to “kill” the bad guy who wasn’t letting the good guy do his work.

The ‘bad guy’ was his brain. His brain was him. Killing the bad guy would mean killing himself.

You can’t tell someone to separate how they exist from who they are. 

It doesn’t work.

It’s not real.

He put a gun to his head to kill the autism. 

So telling my kid that she’s kicking autism’s ass because she’s doing well?

No.

Just no.

My daughter is kicking ass, period. She’s learning and growing and finding her way in a world that autism complicates for her. She’s learning to mitigate the challenges that it presents by leveraging the strengths that it also offers. She’s learning what she needs in order to do both and, even better, finding ways to ask for it. She is growing and changing and progressing. Skills are coming together as she collects the tools that she needs to grab this world by the balls and make it work for her.

Oh, and we’re getting better at helping her to do all of that. Which is pretty nifty too.

“Wow, she’s really emerging from autism.”

No.

No, she’s not.

With all due respect to Dr Grandin, I’ve never liked the word “emergence” as it relates to autism. I find it presumptuous. As though until you can present yourself in a way that enables the rest of the world to see who you are, you aren’t.

What she is doing is self-actualizing. As an incredible human being. One who is funny and loving and, despite some tough stuff, happy far more often than not. One who is engaging and funny and yeah, I know I said funny already, but seriously, the kid is funny. One who is imaginative and creative and may take some extra time to process stuff, but is nonetheless smart as a whip in her own ways. One who is teaching me far, far more than I can ever hope to teach her.

One who is, and always will be, autistic.

**

My daughter is making incredible progress.

In becoming exactly who she is.

And I couldn’t be more proud of her.

 

About these ads

78 thoughts on “what my daughter is not doing

  1. Inspiring. Your journey is far from over, as is hers, but finding the delicate balance to cope, learn and grow , in to this world to make it her own…. Is priceless. Love reading about the road less taken. And finding a beautiful mom and daughter, a family finding what works for them…. aa

  2. I’ve read so many of your posts now, slowly working my way backwards through them. All I can think is how incredibly lucky Brooke (& Katie) are to have you guys as parents – to grow up in a family where they’re not thought of as inherently defective, broken, shameful, in need of constant therapies & the next cure. You go to such beautiful lengths to understand autism and how it contributes to who Brooke is; to help her find her own way through the challenges & to celebrate her successes.

    All I can think is, I wish I had parents like you guys.

    Thank-you so much for sharing your stories & insights. I’m learning to be ok with things – no, learning to thrive, damn it – & your writing has no small part in that. So thank-you. Best wishes to you all.

  3. Another post that resonates with me. It is a fantastic privilege to be able to witness the maturation process as our kiddos figure life out…in their own way.

  4. My daughter is beginning to make some of the great strides you are seeing in Brooke and I couldn’t agree more with the way you have described it. I love “self-actualizing” seven ways to Sunday and am totally stealing it.

    Thank you, once again for saying things ever so perfectly!

    • I understand your point. My instinct is to answer, “And lots of people who have seizures don’t have autism,” but that feels dismissive and I think it deserves more than that, so here are my thoughts on it.

      The post is about autism. Is Brooke’s epilepsy the cause of her autism? No. Would eliminating the seizure activity in her brain eliminate the autism? Not only would it not, but every member of her epileptology team (some of the finest neurologists and epileptologists in the world) agrees that the effect of her mild seizure activity is actually so negligible as to not warrant treatment at all.

      Now, is it possible that the epilepsy is a “side effect” of sorts of the autism? We don’t know. We do know that it’s a commonly co-morbid condition with autism, found in upwards of 25-40% ofthe autistic population depending on who you ask and how you define the autistic population. Nonetheless, we have no definitive answers on causality vs co-morbidity or really much of anything when it comes to this topic.

      So while perhaps there’s something to the idea that epilepsy makes her “unhealthy” I don’t think it really relates to what I’m saying in this post, which is that her progress is happening within the framework of autism, not by conquering it or being healed from it. In a way, the fact that her seizure activity remains untreated and she’s still progressing actually serves to help drive that point home.

      Thank you for addressing the topic. It’s important stuff to think about.

      • Healthy kids can have seizures.. I have done Pediatric nursing for Children along with have 5 of my own kids. There are several reason for a seizures including fevers and other illnesses.
        My daughter had epilepsy for a while as a child, fortunately her last seizure was the first day of Kindergarten. The myriad of physicians and healthcare professionals would treat her with medications that would eventually lower her I.Q. I got so frustrated with the medications that one day I called the Dr.s Office and told them that I was taking for off of the medications because I don’t see any personality with her on them- essentially she was so drugged “She” wasn’t there.. The Doctor warmed me of the dangers to stopping the medications and I boldly asked him if he absolutely knew for sure that she was gonna have another seizure.. He replied no.. So had a relative who was a Pediatric Dr. call our pediatrician and order emergency medications only to be given if she had a seizure lasting more than 3 minutes.. My daughter continued to have her seizures intermittently until the last one that last day of school.. This daughter is now 17 had been on the honor roll in a public school, and does lots of activities including public speaking, band,Karate, dance and voice! I have relatives with children who no longer have seizure and were on those same medications and now have sever learning disabilities. I studied up on those drugs and side effect. I learned that the treatment and study of seizures are closely related to migraine headaches. I have had severe migraine headaches. What I see is something that can be totally recoverable compared to or along side of another condition. I have an older son with a mild form of Autism called Aspergers Autism. I cannot compare the two with one exception.. They have similar Social problems. The interesting and sad thing is that in school the kids referred to them as “stupid” and “Dumb” when both of them had been tested by the Dr.s at Mayo and Iowa City Hospitals to have very high I.Q scores. They just have trouble relating to other kids and both of them stutters and had trouble getting the words they wanted to say out of their mouth.. However , Have never heard that Seizures cause Autism. Autism from what I understand come from the genes and is Hereditary. My children have two cousins with Autism. One is my brothers son and the other is my sisters son..
        Scientists don’t know the exact cause of autism, but since it runs in families, genes probably play a role. Research is under way to see whether chemicals in the …
        read full answer on medicinenet.com

      • My son is a twin, autistic, and has some seizures. He started having seizures at 5 years of age. He has had Grand Mal, Petite Mal, Atonic, Clonic, and Absence Seizures. We can never seem to get them monitored when he is having one, because they seem to be very far between activities. One thing we have noticed, and I am asking if anyone else has seen this pattern, is that he seems to have them when he has made great progress in communication, skills, or some other significant progress in interacting within our “typical” world. I’m wondering if his brain has made new connections and is discharging the extra synapses that are no longer needed.
        He is a neat, funny, smart, loving, observant, and thoughtful kid that I am priveleged to have in my life. Autism is part of who he is and I would no sooner change that than I would anything else about him.
        Thank you for all of your posts and all that you do for your girls. You have given this family a lot of inspiration.

    • WHAT? That is a pretty ignorant think to say…

      I have a friend who suffers from seizures caused by brain trauma while in the womb. She had an abusive father.

      Over the years she has been on a variety of medications, and when she decided that she didn’t want the medication any more and switched to a healthy diet as one homeopathic doctor suggested. She still had seizures…

  5. Your daughter and my middle son were some how split at birth! ;). He is now 14…doing well…could not agree/like more…you are spot on!

  6. Your clarity in describing your journey just blows my mind. I get what you mean about emergence – it’s not an emergence from the autism itself, but more from the sensory overload that can be (and often is) part of it. The autism is always there. Really great post! I am so putting a link to this on my blog!

  7. Thank you for saying this. Autism is a birth defect, like spina-bifida or cerebral palsy. It is not something you can cure or separate from the child who was born with it. I get so frustrated with all these schiesters offering miracle cures, one-size-fits-all fixes for things that simply cannot be fixed. I see so many desperate, hopeful parents wasting valuable intervention time on these things that don’t work because it let’s them prolong their denial just a little bit longer. It makes me crazy.

  8. What I love the most about your blog is it truly is a diary, in that several months ago, you had noted that Brooke’s language development had seemed to slow down, or at least not progress as quickly as it once had. And now we see that Brooke is developing exactly the way Brooke was meant to develop. I see that with my guys so often. It seems that they take two steps forward in one area, then take one step back so they can go two steps forward in another area. And it’s hard to get people (namely, professionals and in-laws) to calm down and see the bigger picture in their development. It also seems to all go back to how we view autistic people. If we truly see their lives and value as being the same as non autistic people, then why are we so hellbent on thinking they will never grow and develop? And even though I’ve used the word “develop” a million times in this response, I truly want to just stop with the clinical talk and enjoy my kiddos for exactly who they are. Thank you once again for your blog and your openness.

  9. Your thoughts are like ours about our son…..we homeschool now because of an extreme lack of willingness by our former school district to see the whole child….to stop “treating” our child….to acknowledge his strengths and support his challenging areas….and he growing by leaps and bounds now because there are no limits put on his successes…..it’s an amazing journey

  10. Her “development” is a result of everyone in her world working to make growth possible and encouraging her to stretch. You have been a most important “mommy bear” in the process. All children benefit when loved and properly encouraged.
    Kudos to you all!
    Love you,
    dad

  11. You have an amazing gift to convey what you mean with the written word. For those of us who suck at communicating like myself, thank you.

  12. Water the flowers and not the weeds. I can’t imagine a world where I would be held down to my greatest weakness or let my daughter be. She has some amazing interests and talents that we develop. And, then know your rights. The school is not going to tell every parent of every kid what the actually are able to do for them because they can’t afford it. The squeaky wheel gets the oil. If you are in Texas, look up the Texas Autism Supplement. It’s the best place to li
    ve for an autistic child.

  13. I understand your reluctance to embrace the idea of emerging from autism. To some it might imply a separation from autism, leaving it behind. I’m 53 years old, almost 54. I rarely think about this but your post reminded me. When I was your daughter’s age I was trying to figure out the paths, unable to take the main road. It sometimes seemed like I was walking alongside everyone else except they were on the sidewalk and I was in the bushes. It was sometimes easier to just stop and sit in the bush than try to keep up with or (God forbid) interact with the kids on the sidewalk.

    The only help I ever got was accidental. Kids were either normal or retarded then and I was obviously not retarded. I had a high IQ, read above my grade level, had artistic talent and good problem solving skills (when the problem was visual/spatial”). So I was expected to be normal. My parents were tolerant. My few friends too. I was hard to get along with then. When I was very young I rehearsed what I was going to say when I had to talk to people. Otherwise I wouldn’t be able to talk. When I was in 11th grade a girl told me, “You don’t have to BE normal, just PRETEND to be normal.” My mom sent me for 1 whole visit to a psychologist whose only recommendation for me was, “Don’t worry so much. Break a rule now and then.” From those bits of advice I studied, emulated, and tried to get close to normal kids.

    As I entered young adulthood I did feel as though I was emerging from the bushes or fog that seemed to keep me separated from everyone else. I have done much better than I ever would have guessed, not great by some people’s standards but pretty good still. But emerging, to me, never meant leaving behind the way I am. It just means having the ability to poke my head up out of it. Should I choose, I could sink back into it easily. But I do not want that.

    Your few words about your daughter’s progress give me hope that she will have options. The personal work of families like yours combined with what we know now about helping kids with autism makes it possible. Not every kid with autism will learn to walk on the sidewalk but the few that do give hope to those that did.

    You are right to be proud of her. Be proud of yourself too, you are reaching people and giving them insight and hope.

    • your words are so awesome. That’s how I feel more days than not and having a child with autism who struggles with the concepts of “normal” and “weird” (which is what most of his classmates have labeled him) I wish for this more than anything else for him…the simple ability to have the choice of joining everyone else on the sidewalk or taking his meandering ramble through the bushes. I also wish that every once in a while the “normal” kids would step of the sidewalk and join him on a ramble because the inside of his world is an amazing place if you can put aside your preconceived notions and allow yourself to enjoy it.

  14. Wow, simple words that have a huge impact, at least in me.
    Thank you for summing what most of us think but do not know how to express. Thank you for reminding us that it is not an illness but a different way of being.
    I love my son the way he is and I share with you that at his 8 years of age, I’ve learned more from him that I could ever teach him.

  15. Thank you! As grandma of an adored and miraculous four-year-old boy, I say thank you. And best wishes to you and your extraordinary daughter.

  16. people never quite understand unless they have been through it. My well intentioned mother is always telling me that I shouldn’t talk to my child about his autism and that by doing so I am giving him excuses and allowing him to act certain ways like it’s okay because he has autism. I’ve tried to explain to her that we acknowledge autism but not use it as an excuse. I try to teach my son that if you acknowledge a difficulty you can work towards a solution or fight to overcome it. He will always have autism…but it’s his responsibility to try his best to overcome the behavior’s associated with his autism that are holding him back and keeping him from having the life or doing the things he wants to do..

  17. Thank you for sharing your story, and I’m happy she is doing well. At the end of the day we all want our kiddos to be happy in their own skin. My son never regressed either, but I see it a little differently. He just never progressed after a certain point. It’s not a matter of curing him from something, but rather a matter of turning down the white noise for him so that his body can heal allowing him to move forward and develop to his full potential. I’ve watched my beautiful boy completely unravel, and I also watched him completely turn that around after addressing allergy and gut issues. I know for some this might not be the answer, but for many of us it has helped tremendously.

    • Im so glad that it was helpful for him. When communication is a problem, any irritant can become completely overwhelming, so it’s so incredibly important to address it with our kids when it is an issue. Someone once said to me in a conversation about sensory issues in school, “it’s like trying to learn French with your house on fire.” I cannot imagine a more apt description. ;)

      • I think that’s about the best way to describe it I have ever come across. I’m going to have to used that one, so thank you in advance. I think we all just need to remember that each of our children, while the same in many ways, are so different that there will never be a one size fits all answer. Instead the best thing we can so is share our stories, be respectful, and most importantly love our kids for the amazing people they are.

  18. Love your post….. my son has one good day- oh he’s cured. WHAT… are you kidding me….. cured of what- it’s just like all the points you made- there is no cure- it’s helping him to express his needs and wants, rather then have a tantrum- it’s helping him learn what his body is telling his brain- because his signals are all crossed- and sometimes no big deal- but when things like eating and sleeping- well, kind of critical to everyday existence. It’s trying to learn while process lights, sounds, smells….. Eating dinner with out family at the dinner table is monumental- between smells and little sister chewing- this always always causes major problems- so one time when it doesn’t- woo hoo… but it may not happen again depending on his state of regulation….It’s so hard for others to even comprehend this Autism world- So thank you for posting and calling out the ridiculous comments- just like your family- we literally just enjoy each teeny tiny happy moment, progress moment- and one good day is wonderful, but we see how much energy goes into that for our son- and it’s 1 step forward 3 steps back… one good day is just that- one good day. And I never know what the next hour will bring, the next day, and I certainly do not look to the week ahead- too much can get in his “way” to navigate this world he continually works so hard at trying to understand and process. It’s not easy- but we certainly take our happy little steps and celebrate.

  19. My experience is very different. My son was not born with autism. It is not who he is. He talked then lost language. He seem to be developing fine but something changed and he regressed. I suspect he has a problem with his neurological and immune systems that makes him ultra senstive to environmental stimuli. Maybe we are talking different autism (s) or the path to autism varies in other words there is not one path but many. We should not discount the eperience of others if they are are different from one’s own.

    • “We should not discount the eperience of others if they are are different from one’s own.”

      agreed, sara. i have said many, many times (so many times it started to get REALLY old), “autism is one word, but there is no one autism.”

      this post is about my kiddo, whose journey is hers and hers alone.

  20. Well said, I’m keeping this article to share with family, friends and therapists in case anyone words my son’s hard work and achievements in this way. Thanks for sharing, and how inspiring to hear your daughter is, as you put it, kicking ass!

  21. well, that is great that you and your family can have peace of mind. I am truly happy for you. But, your daughter’s autism and my son’s autism obviously have totally different origins. My son has tons of abnormal lab results that prove that his brain is damaged due to a biomedical issue. So, I cannot feel the lack of pressure to not “fix my son”. I do feel that if something is biochemical and medical in nature, then it should be addressed aggressively in that forum. We have been doing that for years, and yes, we have made progress. We are on a different journey than you and your daughter. I can be happy for you and your daughters progress, but you should also be happy and accepting of families like mine who are pursuing biomedical treatments.

    • I’d urge you to read the post again, and also my response to Sara above. The post is about my daughter’s journey. It reaches no farther than that. If you read anything I’ve written in the past, you’ll see again and again and yep, again, that I make it very clear that autism is one word but there is no one autism and that everyone’s journey is their own. Thank you for reading, but please don’t assign judgement that isn’t there. It’s simply not.

      • Actually, no.
        You wrote that when people say certain things they are “serving to perpetuate some dangerous myths about autism”. Perhaps, what is more accurate, is that YOU feel they are perpetuating myths about BROOKE’S autism. Because, as you are reading in these responses, the words “recovery”, “emergence”, “cure” are applicable to other people’s autism. And when they use them it is because it is their experience, and no, they are NOT perpetrating dangerous myths about autism.

      • “Perhaps, what is more accurate, is that YOU feel they are perpetuating myths about BROOKE’S autism.”

        Precisely. And if they are myths for her, then they are not accurate GENERALIZATIONS about autism. And perpetuating the myth that they are is dangerous for those for those like her, for whom they are not remotely true.

        To use them to describe their own, or their own child’s, as the case may be, experience, might be perfectly appropriate, and, were they to do so, I would take no offense nor assume that they were either making a generalization about my kid (because they weren’t talking about her) or dismissing her experience (because they weren’t talking about her.)

      • thank you kim. a much more compact way of making the point I was trying to make.

        Jess: Just because these statements don’t apply to brooke doesn’t mean they don’t apply to other children with autism and to say that because they don’t apply to brooke then they are harmful to the autistic community as a whole is a disservice to the children they do apply to.
        It’s fine for you to say “I prefer you not to use these statements when talking about my daughters autism because my family and I believe them to be detrimental to her progress toward social integration (or whatever you want to call it) because,,,(and list your reasons) We are all entitled to our opinions after all (I personally hate when teachers tell me not to worry that my autistic son will do fine in class and there won’t be any problems, especially when I know that to be untrue and that there will be problems and I’m trying to help her avoid them by warning her of his triggers and danger signs…and I tell the teachers that I hate when they say it) and we are entitled to parent however we see fit.

        however, your daughters autism is not my son’s autism nor any other childs autism, and despite what you may have meant by what you said your wording makes it sound as if because these things don’t apply to your child then they should be discounted for all children. If you truly believe it when you say there are no generalizations in autism, then don’t make the generalization that these statements are hurtful to autism and the autistic community in general when what you mean is that they are hurtful to how your family feels about your daughters autism,.

        I personally am rooting for scientists to find a cure for those children who have hope for a cure because their autism is caused by environmental factors or diet or whatever. I’m also rooting for scientists and psychologists to come up with more effective treatments for those children who cannot for whatever reason hope for a cure, but need better therapies. I know that a cure isn’t possible for my son but I do believe that better therapies can help him and other children who struggle like he does to learn to adapt and live in society rather than on the fringes of it. If that is biomedical (I lean more towards the bio and less toward the medical with dietary changes, physical exercise and therapy, and other related things while avoiding chemicals and relatively untested drugs) then as long as it’s not potentially harmful I am willing to try anything to improve the quality of his life. I would hate to have scientists give up on the cure because of people like you believing that someone having that hope is detrimental to the autistic community as a whole because In my opinion it’s not. If one scientist believing there’s a cure and working tirelessly for that cure finds not the cure but safe effective treatments for even part of our community then that’s a win in my book.

    • Hi TMM. I can’t begin to understand your experience. But know that although Jess’s posts are directed toward her experience alone, she is a champion activist for asking others to not judge the journey of each other. When I came upon her blog, I read a current post and then went all the way back to the beginning. Over the course of a week, I read the entire 5 years of her and Brooke’s journey. Though your and your son’s experience is different, you may find a treasure trove of support, understanding, and some really eye-opening observations in Diary. Again – it’s HER journey only, BUT one thing that permeates her blog is the call for understanding re. the different paths we all walk in our autism journeys.
      Hugs to you and your kiddo.

    • I get what you are saying tmm. although Jess is hurt and offended when people make generalized statements about recovering from autism and kicking autism’s tushy and so on because she believes that’s “who her child is”, not a condition her child happens to be afflicted with that could hopefully one day be cured her statements that those comments are hurtful do not apply to your situation because you do feel like this is a disease that you want your child cured of. You have chosen a different path in your families attack on autism (Kudos to you and yours for that…it takes courage and strength to fight either battle) Like Jess I believe my child was “born with autism” I know other autistic children who were clearly affected by something at some point in their early development. If my son’s case were like that, had he been developmentally “normal” and then suddenly stopped progressing or even regressed, I too would choose to view it as a disease that was attacking and destroying my child that needed to medically or in some other way eradicated from his body.

      Note to Jess: I understand why you feel the way you do because I feel the same way. However, making generalized statements that put your feelings onto the autistic community as a whole are just as dangerous if not more so than what you are trying to stop. Saying things like

      “what they’re offering is some really kindly intended yet wildly inaccurate assessments of her progress that they have no idea are serving to perpetuate some dangerous myths about autism. And I need to address them.”

      discounts the fact that for a lot of families dealing with autism the reality is they do believe it’s a disease that’s destroying their previously healthy child. They are hoping for a cure and they do see every step forward as a sign that they are beating Autism and who knows…maybe they are and maybe one day scientists will have a cure for those cases where there isn’t a genetic predisposition or it was obvious at birth or shortly thereafter that the child was in some way affected.

      Just because it doesn’t apply to your daughters journey with autism that doesn’t mean it’s a dangerous myth that needs to not be perpetuated because neither you nor the scientist know that right now. There is no clear or difinitive research that has found an exact cause for autism. Right now doctors are shooting buckshot in the dark and hoping to hit a target because in reality they just don’t have any real answers.

      • The fact that they are assuming that the generalization is appropriate is indeed perpetuating a dangerous myth that ALL autism is .. well, anything, really.

        The generalizations ARE the myths. I’ve had this conversation too many times to count, especially as it relates to the misconceptions that ALL autistics lack imagination and empathy. When i say that my daughter’s clear display of both busts those “myths,” i am not asserting that no one on the spectrum has difficulty with empathy and / or imagination, but that it is simply wrong to say that everyone does, as my daughter proves.

        The same is true here. I am not discounting anyone else’s experience by talking about ours specifically or by asserting that lumping ours in with anyone else’s is appropriate, and of course the inverse is true as well.

        I wrote the following, along with god knows how many other things just like it, both here and on huffington post last year. I think it makes my stance on all this pretty clear:

        “If there’s one thing that we’ve all learned as autism parents, it’s that gross generalizations are almost never appropriate, accurate or helpful to us or our kids. We spend a lot of time and energy reminding the rest of the world that when you’ve met one person with autism, you’ve met just that — ONE person with autism. Although autistic people arguably share similar traits, our precious children are as different from one another as… well, we are from one another.

        I don’t know how many times or in how many ways I can say it — autism is one word but there IS NO ONE AUTISM.

        So to say that autism is categorically, unquestionably, lay down the hammer and refuse to entertain the existence of any other possibility a lifelong condition for every autistic person and that no one’s neurology can EVER change has far too many quantum leaps, assumptions and absolutes for my comfort.

        Nor do I believe that EVERY person with autism has been environmentally injured or that EVERY person with autism can or will “recover” by undoing said assumed damage to their wiring through biomedical treatment.

        Both of those assumptions insist upon gross generalization. And I’m not playing that game.

        There are so many kinds of autism — so many underlying conditions that can create autistic characteristics and lead to behavioral diagnoses of Autism Spectrum Disorder. I don’t doubt that some are purely genetic. I don’t doubt that some are based upon seizure disorders and other neurological conditions. I don’t doubt that environmental injury is real.

        I don’t claim to know what the culprit — or more likely culprits — may be. I tend not to think that it’s as simple as mercury or an overload of vaccines, but if I told you that I’ve never wondered about the effect of the thimerosal in [my daughter's] flu shot years ago, I’d be lying.

        While I think that vaccine-induced regression is far rarer than some would have us think, I certainly don’t have the audacity to doubt the heart-wrenching stories that I’ve heard some parents tell. I can’t. Who am I to call another parent on this road a liar?

        [My husband], Luau and I have not pursued biomedical treatment for our daughter. We have scores of reasons. Some are for public consumption; some, out of respect for our daughter’s privacy, are not.

        The bottom line is that after exhaustive observation, research and testing — and I do mean exhaustive observation, research and testing — my husband and I made the judgment call that [biomedical intervention] is not the right path for Brooke.

        Nothing in our world is static, so that decision, like all the others we make regularly on her behalf, remains open for debate. As factors change with time, we plug and replug them into the equation. We recalibrate. We reassess. We discuss. We decide again.

        We research diet and read voraciously about new interventions. We calculate risk versus possible reward. Constantly. And so far, our answer has remained the same.

        Brooke has shown no sign of gastrointestinal distress. She has not appeared to have any kind of sensitivity to particular foods. She has not shown any indication of heavy metals in her system. We could not find any sign that would lead us to believe that biomedical intervention would help her. And, FOR US, it therefore wasn’t worth the risk of finding out.

        Both Luau and I are medically cautious by nature. We are exceedingly uncomfortable with taking anything ourselves or administering anything to our children that hasn’t been scientifically tested to within an inch of its life on a large scale over a long period of time. Perhaps we are overly cautious. So be it. The decisions that we make based on that excess of caution are ours alone.

        So that is what WE do. That’s what WE have decided. For OUR kid. And none of that has any bearing whatsoever on what anyone else might do. What they might have decided. For themselves or for THEIR kid.

        I would never deride anyone else’s choices regarding their child’s care. Even if I find a particular treatment personally abhorrent, I can only find it so through the lens of my own experience with my own child, therefore rendering my judgement irrelevant at best and fatally flawed at worst.”

      • Nicely said. I agree. I think this explains why autism parents are frequently at odds with one another. Noone is wrong. Whether a child was born with autism or regressed into autism due to environmental factors those paths to autism are both legitimate and the truth for that child. Instead of being divided, I think there is greater strength if we recognize that not all paths are the same and our community stays united to help our kids regardless of how our kids got there.

  22. Agreed…Autism is only a way for me to understand my son better. He doesn’t think like everyone else does and that’s okay. My job as his parent is to help him learn to navigate a non-autistic world, in a way that allows him to find happiness and peace in his life.

  23. This is the first post I’ve read in a long time that resonates with me. LOVE IT! I can’t hate autism, I just can’t. It’s so much a part of my boys, it would be like hating them. And I love them, and they are amazing and awesome, all of their crazy quirks included. Even the really hard ones. Thanks for making me feel less alone. I usually feel like the only one not looking to extinguish autism from our lives.

  24. wow. I was lucky enough to stumble upon your blog and have spent hours on it and other links from it. Thank you. I am in my 2nd year of my graduate program in Autism and just starting to get into the heart and soul. What a great way for a teacher to gain perspective.

  25. 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.

  26. I am a mexican mother of hfa 11 year old Marti, at 3 he wasn,t high.I often read your blog and would love to share a poem i wrote for my son and autism.
    SEE THE WAY I SEE
    HEAR THE WAY I HEAR
    SMELL THE WAY I SMELL
    FEEL THE WAY I FEEL
    THINK THE WAY I THINK

    IF YOU LOOK INSIDE OF ME
    YOU CAN PERCEIVE THE WAY I SEE THE WORLD
    THEN YOU CAN GET TO KNOW ME
    THEN YOU CAN UNDERSTAND ME
    NOT JUDGE ME FOR WHAT I DO
    FOR HOW I AM
    FOR WHAT I AM

    AND STILL A HUMAN BEING
    DESPERATE TO FIT IN
    STARVING FOR ACCEPTANCE
    NOT COMPASSION
    IN YOUR WORLD
    ALSO MY WORLD
    ON MY OWN TERMS
    AS A HUMAN BEING
    AS YOURSELF
    AS MY OWN SEL
    F

    Hoping the world to accept neurodiversity and open doors for our kids to a new era
    of complete acceptance. May god help them always when we are not there for them
    to advocate.

  27. I appreciate this post. I have also heard the phrase “recovered from autism” and it does not sit well with me. As said in the post it is not an illness they can get over it is and always will be a part of who they are. This was a much needed read for me today as I had a rough conversation with one of our service providers. We are 9 months into our diagnoses and have been extremely blessed with the quickness of accessing services but have also been challenged with the constant rotation of those providers. I have the utmost respect for the provider that approached me about the importance of structure in our little guys day to day routine and agree that sometimes it is easier in our household of eight to let him enjoy his solitude but I would appreciateif the providers would also recognize the impact they have on our children when they come in and out of their lives. Tomorrow is another day and our journey has only just begun, but I know will be worth it to see our little man become his own person and find his place in this world.

  28. i love this post. THANK YOU! My 2 aspies are the same. Doing so well, becoming who they are meant to be, and the ASD is an integral part of who they are. I don’t want them cured, recovered or emerged!!!! They are walking their own paths, in their own good time, in their own crooked way. And I love them so much.

    Congratulations on this marvellous stage. I can”t help but think it does get better, when I look at Mr 15. A boy whose experience of primary school was so toxic that he thought he was an idiot, who never believed he’d do Yr12, has been INVITED to do a 3 year VCE at his wonderful school. He’s not perfect – heck, sometimes I wonder who this kid is, that other people tell me is mature, considered, studious, caring of others, a mentor to younger students and generally, a leader among his peers. All those years ago when he sat in the car screaming, kicking, trying to destroy the car itself – and I look at him and want to cry tears of joy!

  29. I just want to add my two cents to the discussion about the idea of recovery. Personally, I’m uncomfortable with the meaning behind recovery. I often hear parents talk about it as something THEY do to their kids, as in, “I recovered my son.” To me, that speaks of an inherent bias against autism, as if an autism person has be rescued by someone who is not autistic. It also gives weight to the idea that autistic people don’t have worth or value other than their “typical” traits. That is, my children are seen as autistic UNTIL they are able to talk and play with others. At that point, they must be recovered. This simply is not true. It seems that the idea of recovery is based on stereotypes and prejudices that somehow still exist today. It’s based on the idea that autistic traits are bad and typical traits are good. It discredits accomplishments by autistic people (instead of saying, “He graduated high school? AWESOME!” it is “He graduated high school? Way to go, Mom! You recovered him!”). And it’s hurtful. My autistic children are much, much more than the sum of their behaviors. And autism is much, much more than symptoms alone. And it’s dangerous to think that we have to recover these children, as if behind every autistic child is a typical child. Or if we don’t push our children into 40 hour work weeks plus weekend therapy plus medical interventions, they won’t turn into functioning adults. (Which is odd, because it’s not like there’s a community of autistic adults running around like 3 years olds, not knowing what to do and how to function, all because their parents didn’t recover them when they were young). I personally am open to others pursuing biomedical interventions if they feel it is necessary, but with the purpose to enhance their childrens’ lives, not to fix them. And I think it’s really difficult to expect the world to support and respect my children if I don’t act in a way that is supportive and respectful to them. Therefore, I reject all ideas of recovery. Autistic people communicate. They have friends. They live meaningful lives. This is neither in spite of or because of their autism. It’s because of their basic humanity. I think the sooner we realize this and stop trying to cure our kids, the better off we all will be.

  30. I received an email from a person/company touting a certain way of eating. The person is well respected and I’ve been following them for years. In this particular email, the claim was made that their way of eating cures autism, a disease. I shot an email back explaining how autism isn’t a disease, etc. etc. etc. I will also forward them this post. Perfectly timed. Thank you.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s