just what these kids do

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{Image is a photo of a girl wearing a handmade mask. Her face is hidden.}

I’m worried about our kids.

I’m worried that far too many of them are being diagnosed with an autism spectrum disorder and sent upon their merry way – without help, without guidance, and, above all, without ongoing critical analysis because, hey, they’re autistic.

But here’s the thing, my friends, autistic or not (and autistic or not can be a big question given the decreasing age at which doctors are becoming willing to dispense diagnoses), not everything that an autistic person does is necessarily attributable to autism. People, all people, are much more complex than that.

I feel like this is a really clunky introduction to what I’m trying to say. I’m fairly certain that throwing more words at it will only make it even clunkier. Perhaps some real-life examples might make more sense than my rambling. All of these are true, though identifying details have been changed for privacy.

*

A mostly nonspeaking autistic little boy is violently banging his head in a kindergarten classroom. His teacher, concerned about him and the threat of long-term damage to his head, asks his aide what they can do to help him. The aide explains that the teacher need not worry because head banging is a common autistic behavior. She promises that it’s “not as bad as it looks; it’s just what these kids do.”

Years later, the boy is able to explain that he bangs his head in school because he can not tolerate the humming of the flourescent lights in the classroom. “Bee light hurts,” he says. Slamming his head into the desk or the wall is the only way that he can manage to make the buzzing stop, if only for a moment.

Until he was able to explain his behavior (some five years later), no one ever looked for a reason. By attributing the head banging to autism and “just what these kids do,” they had effectively abdicated any responsibility to dig deeper – to scour his environment for possible triggers or to help him to find a way to communicate what he was feeling. When asked how he felt about it in fourth grade, his answer, delivered via a picture board, was, “Sad. Jamie hurt Jamie.”

*

An adolescent girl with Asperger’s becomes more and more withdrawn. Middle school is tough for everyone, her parents reason, so it’s nearly impossible for someone without an understanding of social convention. Who wouldn’t shut down to protect themselves from hurt?

She comes out of her room less and less. Her parents can’t get her to participate in family activities. NIght after night, she asks to eat dinner in her room.

It all makes sense, says her therapist. She is autistic, after all, and autism is characterized by a lack of desire for social interaction*. Satisfied with the explanation, no one looks further.

A year later, things have only worsened. Increasingly worried, her parents bring her to a new therapist who diagnoses her with clinical depression.

It wasn’t that no one had seen the symptoms, her mom explains to me. They saw them all. They reported them all. They looked for help in all the right places. But everything that she was doing was written off as part of her autism.

She will tell the new therapist that she spent nearly a year contemplating suicide. Her mother will sob while telling me the story.

*

A friend tells me that her eleven year-old son, who is autistic, pulled a knife on her last week when he panicked during a disagreement. We talk at length about how desperately she has searched for help. She tells me that she is convinced that he will kill her one day in the middle of a similar outburst. “And then he’ll feel awful about it,” she says.

I ask about their journey. Therapy, medication, specialist after specialist – they’ve done it all. She tells me that she has begged everyone they’ve ever seen to treat his anxiety because she knows without a doubt that fear is at the root of his aggression. He is only violent when he panics. No one will listen. The only drugs they offer to prescribe are for attention. She is frustrated. And terrified.

That young man did not pull a knife on his mother because he’s autistic. He pulled the knife because he was scared. His mother wants nothing more than to help him, but has no idea how without first finding out why.

*

In Andrew Solomon’s much talked about recent article in the New Yorker, he writes about his interviews with Adam Lanza’s father, Peter.  This is what he says:

Peter and Nancy were confident enough in the Asperger’s diagnosis that they didn’t look for other explanations for Adam’s behavior. In that sense, Asperger’s may have distracted them from whatever else was amiss. “If he had been a totally normal adolescent and he was well adjusted and then all of a sudden went into isolation, alarms would go off,” Peter told me. “But let’s keep in mind that you expect Adam to be weird.”

Adam Lanza didn’t kill twenty-seven people because he was autistic. But because he was, Peter, Nancy, and everyone they went to for help, stopped asking why. Autism, as both Peter and Andrew say emphatically in the article, isn’t the answer after Adam’s death, and it should never have been a reason to stop looking for explanations for his behavior — and ways to help him — before it.

*

I’m worried about our kids.

I’m worried that an autism diagnosis, even with all the insight that comes along with it is, in some cases, turning into a roadblock rather than a key.

I’m worried that we’re using it as an excuse, an easy out, a catchall for, as my friend, Barb would say, all that ails ya. I’m worried that we’re allowing it to explain away things that need far, far more investigation, and for which our kids need far, far more help.

I’m worried about our kids.

* This is an assumption that we are beginning to understand is not always, if even often, true.

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37 thoughts on “just what these kids do

  1. I have a huge issue with Adam Lanza’s father in the first place. He didn’t have anything to do with his son for two years before Adam killed. He totally abdicated his responsibility as a parent to his son. I found the interview self-serving and repulsive.He left the entire burden of dealing with Adam in the hands on his mother who obviously was very isolated and had no idea what to do and had no one to reach out to. Lanza is the last person anyone should listen to when it comes to dealing with a child with issues.

    • When I first read the article, I felt similarly. And then I realized that my judgement was a defense mechanism working in overdrive. By judging him, I was distancing myself from him and his story. By proclaiming how different we were, I was dismissing any opportunity to learn from him. People in unfathomable situations act unfathomably. I realized now that I can’t expect to be able to understand his though process.

      I the end, I decided that while judging is far easier than listening, when we stop listening, we stop learning. I don’t have to think he was right to learn from where he was wrong. So I’m listening.

      • I think that what disturbed me the most is that his entire attitude is that woe-is-me parenting. This perspective so disturbs me with many parents. I found his excuses reprehensible. I don’t think my judgement is a defense mechanism, nor one of distancing myself from Lanza personally, but one of anger at him for his selfishness. I have known so many people in many situations over the more than 20 years of parenting my boys (both of whom have aspergers) and every one of them fought tooth and nail for their children and still do to this day. I guess we are simply going to have to disagree on this issue.And you are also alot more generous than I am.

        But I do agree with you that we need to learn from this, listening to what he says not so much, but learn what not to do and to keep seeking, searching and exploring answers for your child when what is being done really doesn’t work. To never give up and never give in. I suppose that is what disturbed me more than anything else, that Peter Lanza really just threw up his hands and said “I give up.”

      • i hear you completely and really do understand where you’re coming from. i just come back again to not expecting to be able to fathom someone’s behavior in an unfathomable situation. i can’t get inside their home, their family or their hearts, so i have no idea if he really gave up or if he was still trying to figure out how to get in despite both his son’s and ex-wife’s refusal to allow him to visit. maybe he’s selfish. maybe he’s an utter ass. and maybe he’s a parent who felt lost, shut out by his son and his ex-wife, who didn’t know what the hell to do about it and who lives with regret every day of his life. i have no idea. i choose not to spend time trying to figure it out, but instead to see what i can take from this tragic mess to make myself a better parent to my kid. but still, i get it.

    • I also felt the same way initially. Then I realized I don’t want anyone from the outside judging my parenting choices. We have no idea what led up to that. I also don’t have to listen to what he is saying now.

      • But Michelle, if you had a child commit terrible acts then it is the right of society to judge your parenting choices. There are rules, regulations and laws that delineate what is and is not good parenting. When you are a member of society and want to be fully included in that society, those around you are going to judge because how you parent does end up effecting their lives and children. This, btw, is not just for parents of children with special needs. but for all parents.

  2. When this happened the first thing I said to my sons therapist was I was afraid if we didn’t get him the right help that some day that my son may do something similar. She blew me off telling me it was different. I still have that worry in the back of my mind and I don’t know that it will ever go away. Therapy is a good thing and hopefully he will learn skills along the way.

    • when we started on this journey, brooke’s preschool teachers told us that her anxiety was her (and their) biggest impediment to learning, and to particpating in the life of the classroom. we immediately recognized their words as true in her life outsdie of school as well. we went straight back to boston children’s, where she had been diagnosed. they had no suggestions. none. “part of the way her autism presents,” they said. we heard about an anxiety clinic at a local college’s med school. we tracked it down only to be told she was far too young to partipate. “come back in 7 years,” they told us. we floundered until she was 5 when we found a neuropsychologist / dev pediatrician team who saw what we saw and who finally offered help. it’s incredibly frustrating.

  3. Wow. I would be upset too if I heard these stories. It angers me that a school would say ‘oh he bangs his head because he’s autistic it’s what they do’. That is asinine! Infuriating! How ridiculous that they wouldn’t know something so basic as he is frustrated and trying to communicate that the only way he can! No worries about his brain? I know someone who was banging and induced a seizure, fell and broke his back! OMG. I’m so angry right now. We have a lot of work to do people.

  4. Thanks so much for writing and sharing this insight. I am convinced that a late diagnosis can be a blessing, as it forces a) coping mechanisms (obviously this doesn’t apply to everyone), and b) reflection. If we don’t have a handy “label” to hang all our “differentness” on, we have to keep hunting until we find the truth, then deal with that for what it is.

    • i hate to discourage diagnoses though, given the invaluable insight that they can offer. i really hope that rather than avoiding labels, we can understand them better and see that they are never all-encompassing, universally explaining nor limiting.

  5. You’ve got me thinking this morning, as a bit of a corollary about something I read once and can no longer place. It was a discussion of the sadness of having to use language in general, in which the author said that the point at which we find a name for anything becomes the moment when we stop trying to understand it any further. As you write, the autism label can bring us so much in the form of understanding and community but it can also become a point at which we stop trying to understand someone any further and unfortunately sometimes take it as a reason to accept less for them.

    • I have found that some parents obsess soooo much on the autism that they forget that their kids are “just kids” also. My son is 15 and is autistic, but he’s still 15 and has the attitudes and hormones of a 15 year old. Can’t say, “oh, he’s autistic, and that’s just the way he is”. No, he’s 15 and that’s why he acts like that. Labels are a detriment to some parents. It’s an excuse to allow their kids to act different and for them not to be responsible for the action of that child. Sad.

  6. Adam Lanza’s father: “But let’s keep in mind that you expect Adam to be weird.”

    My goal is not to criticize here, but instead focus on that mindset. What happens too often is that some parents, when they have children who are different…they just feel bitterly disappointed. And from that point on, they dislike their child. I think it’s so important to find ways to reach parents like this…parents who feel like they have a “weird kid”, who they then write off and want little to do with. Instead of listing the many, many examples I know of where one parent or both decide their kid is “weird” and then basically distance themselves emotionally…I’ll just say, it’s a conversation that needs to happen. Somehow. I don’t know how to broach the topic; I think bashing these parents only pushes them away, prevents them from ever having a chance of seeing things differently. I guess the problem is that discussing these issues leads too easily into blaming a parent, and that’s counter-productive. But there is this ugly truth: there are parents out there who dislike their child…and for me the question is, how do we change those minds, help these parents feel okay with differences?

    • i don’t know any way other than trying to show them, one by one if necessary, the beauty of a life of acceptance. we write our stories, talk about our lives, share the glory of difference. brick by brick we change the perception of “otherness.” until we figure out a better way, that’s all i’ve got.

  7. Thank you for this, for a lot of reasons. Seriously, one of the most hurtful things to say to anyone who needs help is “oh, they’re just…” or “Oh, you’re just…” When it comes to pain, there is no “just”. It’s that much worse when there are no words to help figure it out. The lack of empathy we neurotypicals have sometimes is mind-boggling (and painfully ironic considering the “no empathy with autism stereotype).

    Thanks to you and other parent and autistic bloggers that you lead me to, the phrase “If your child/friend/whoever were not autistic (or other), would you do/say _________?” is branded on my brain for whenever I hear the word “just”, or the attitude that goes with it.

  8. “they had effectively abdicated any responsibility to dig deeper” this bothers me. Whether it’s a parent or a teacher or a therapist.

    We find ourselves often asking ourselves is his behaviour because he’s a boy/teen/kid or because he’s got Autism? And if so, where do we dig? What do we ask to uncover the reasons behind it? Is it just one of those things or is there something we can do to help.

    There is no right answer. Though the wrong answer is not to ask at all.

    Thank you yet again for making me think about things more deeply.

  9. Jess, I’ve read your blog for a long time and never commented until today. Shortly after Jack (my son) was diagnosed I went to dinner with an old High School friend who is an ENT physician now. I told him about Jack and he said something to me that still kind of haunts me today. “I don’t know a lot about autism, but are you worried that if he gets labeled as autistic that everyone will stop looking for what causes his autism? I mean autism itself is not really a disorder, it’s a presentation or collection of symptoms with a commonality in their symptoms. My concern is that you and the schools and the medical field, will settle on autism and stop looking for what caused that developmental delay in the first place. I feel there’s a danger in over diagnosing. Are you worried that if someone tells you your kid is autistic, and you raise him as such, he’ll always be?” And I was really hurt when he said that, Jack is, after all, unquestionably “autistic”.

    But, today after reading your post, I get what he meant.

    Thanks for writing this.

    Long time fan.
    -Jordan (Find My Eyes)

    • Wow your post and all the replies have so much food for thought…
      Jordan what you say here is spot on.
      What worries me is the label is seen and that is that.. No help, no support, no belief that progress can be made.
      Our world is not in “autism” but developmental delay due to a connective tissue disorder. We had a maze to get a diagnosis for what you explain here. We were in neuromuscular so the neuro was looking for something that wasn’t there. He just didn’t stop to ask more questions, get a second opinion out of his speciality.
      At 12 months my son was not sitting up, global developmental delay…
      Thankfully we connected with something called conductive education which worked for him….Now he is 7: walking, talking, climbing, jumping etc …
      I can’t but think constantly what if we had waited, what if we hadn’t intervened when we did….
      All this is a melting pot….and other things can occur along side the initial diagnosis and/or as a result.
      We need to learn to see the person, their individual needs and stop looking at “conditions”.
      Thanks to all that have responded. I have really valued this…

  10. My boy has a lot of bot anxiety and sensory issues, which lately seem to have gotten worse. Even wearing shoes with no socks to get to school has been a HUGE obstacle for him, when he had been able to do so before, although not without any challenge. He has also been complaining of various pains, among other things, so I took him to the doctor yesterday wanting to looking into things more deeply to see what might cause him to be more sensitive to things in the past weeks. The doctor actually just pointed to his records where it said “sensory integration disorder” and said “this is why”. I was so angry, I couldn’t even argue, and am scheduled to see another doctor, who hopefully, is getting this point of view. It is just so disappointing to see how many professionals don’t get it and just stop questioning things.

  11. Yes! We must not stop looking for the root causes. Youngest was diagnosed with ADHD with anxiety and treated, with some success for years. Always an underlying angst and lack of or inability to or lack of knowledge that he needed to communicate internal thoughts. Sudden onset of aggression in 8th grade followed by multiple psych hospitalizations. Add mood disorder NOS and Asperger’s. Still doesn’t explain sudden aggression. Reading Tony Atwood. See reference to two extreme reactions to bullying: shutdown or extreme aggression. Is this the answer? Another hospitalization for self harm. Medical side finds high ammonia levels, discontinues med that may be causing high ammonia levels. Ammonia levels stay elevated. May have liver damage or a metabolic disorder. High ammonia levels can cause major mood changes. Could we have wasted an entire year of his life chasing answers to the wrong questions?!?! So frustrated, sad and feeling guilty.

  12. This is completely and utterly awesome in every way. I can say, without a doubt, that the last two of the situations you described autistic kids being in (the depression and the anxiously-reactive “violent” streak) both literally happened to me, and the first one at least figuratively did (I’m not a head-banger, specifically). And I’m one of those “Wow, you can’t even tell!”-late-diagnosis autistic people.

    And oh, god. The anxiety thing. i honestly don’t even know what to tell people anymore when they are looking for help with their kid’s anxiety…Because I know that I can not remember an age when I was absurdly anxious ever in my life, and I am still absurdly anxious. While it’s much more under control than before, it’s still like…a consistent problem. All I know is the following:
    1. Self-soothing tactics are what makes my world turn, and I’ve learned that I have to advocate for my right to engage in them, even when that means not doing other important/time-sensitive things. Can you imagine telling a college professor “Hey, so I know that I’m supposed to finish this paper as soon as I can, but I’m so anxious right now that I need to take a day and do calm things before I get back to it…” But it’s so important. So important. I have, like, lists of self-soothing things stored away.
    2. 99% of the physically disruptive and violent behavior that I engaged in when I was a child was the result of extreme anxiety. I’d feel claustrophobic and hyper-reactive, so that if you even moved towards me I would either run away, or (if cornered) lash out in sheer panic. If/when you’re kid is verbal enough for it, CBT (cognitive behavioral therapy) can work well. It’s all rules and strategies and being rational, and so people who are more “Aspie” can really take it and run. Anxiety specialists are great; many of them don’t know how to deal with people with DDs, but they’re often super sweet people, and willing to learn.
    3. Drugs. Drugs are great. Drugs are complicated. But great. I’m a big fan of SSRI’s right now. But lots of drugs are great. Also if they’re putting a kid with severe anxiety on ADHD meds and they make it worse, ask to try non-stimulants (Strattera, Wellbutrin, etc). I take (high dose) ADHD medication, that is a stimulant, despite my anxiety, because my anxiety is worse when I can’t pay attention to jack, but a lot of people I know really can’t handle stimulants because they make anxiety worse.
    4. Jess, you’re da best. This post is so important, I want it on like…a T-shirt, or a business card, or something.

    • aw, thank you, love.

      your words ring so true on so many fronts. as for drugs, yes. i was so resistant given how young brooke was at the time, but SSRIs have been life changing and life saving (for both of us.) as for stimulants, omg, we tried metadate years ago. it was one of the worst things we’ve ever been through as a family. i can only imagine how horrible it was for my baby girl. i have a post about it somewhere, but i just … can’t.

  13. These stories are heart-breaking, but thank you for sharing them and reminding us that every behavior has a root cause beyond autism. Personally, the autism diagnosis has helped us to realize that our son is getting overwhelmed (it’s too loud in here, there are too many people, he needs to walk away for a bit and come back), and we can de-escalate situations that might otherwise end in tears and screams. But how would we know any of this unless we heard from the people themselves? I love to hear how your daughter (and others) are able to express what is going on, even if it is years later, and I hope to have a similar conversation with my son someday. I hope that he will trust us, that how we are responding to him now will only help.

  14. Pingback: This or That | Aspergers and Me

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