But He Doesn't *Look* Disabled

Posted by: , March 28, 2011 in 11:48 am


QuiGonJinnV3Wallpaper But He Doesn't *Look* DisabledIn amongst the comments on my last two posts about Autism were two that stood out to me.  “I think that autism is diagnosed too easily…I really don’t think social-awkwardness is a disease…some people are just a little different…”

Another commenter, probably the same person wrote: “I’ve been reading your blog for quite a while now…and from everything you’ve written about Little Dude, he seems like a normal little kid. Yeah, he might be a late bloomer on some things, but every kid is different… What makes you positive he has autism? From what I’ve read, he just seems like a regular little kid that’s maybe just more sensitive than the ‘norm’… Everyone has anxieties over school, friends, relationships, homework, etc…That doesn’t mean something is necessarily ‘wrong’ with you, or that you need medication..Everyone has to deal with life, and what life throws at you, that’s what growing up is all about….”

I did at first, wonder if they were a joke.  I mean, really?  Or that possibly this reader is confusing some of my posts about Cookie, who specifically has anxiety, with some of my posts about Little Dude.  While I don’t take these comments personally, I can’t just shrug them off.  To me, they highlight exactly why we need Autism Awareness Month.

Despite anyone’s doubts, Little Dude has been diagnosed with Asperger Syndrome, a neurological disorder on the Autism Spectrum, by two different medical professionals: a pediatric developmental neurologist, and a school psychologist.  (The fact that I referred to them as Dr. Orville Redenbacher and Qui Gonn Jinn doesn’t change the diagnosis.)  Little Dude has subsequently been seen and evaluated by a host of professionals: pediatricians, therapists, and special education teachers, and at no point did anyone say, “hey, that’s what growing up is all about.”

Then I wondered if I am romanticizing our situation in my writing.  I often write about Little Dude’s awesomeness.  I don’t need or want to write post after post about his flapping hands or the fact that he can spin a Lego guy between his fingers, rocking back and forth and making the same noise over and over, for an hour.  I don’t want to relive it every damn time he freaks out from being in the smallest crowd, or our inability to go to places that other families take for granted because it will trigger a panic attack.

I don’t want to write it.  You don’t want to read it.  Many of you are living it.

OR But He Doesn't *Look* DisabledParents of kids on the spectrum are so deep in our awareness of autism that we forget that there are people who haven’t personally been touched by this disorder.  Depending on a person’s attitudes toward parenting, mental health, and modern medicine in general, not everyone is going to see that autism is all too real.

Plus, you have to factor in some other issues:

  • We don’t know what causes autism.
  • We don’t know how to cure it, nor can we agree on whether autism should be cured.
  • No one single technique or group of therapies helps all autistic children.
  • Two words: vaccine debate.
So now you’ve got this big ol’ mess of facts and myths, quackery and science, inconclusive studies and anecdotal evidence.  The big news in autism, as newspapers and magazines keep pointing out, is that we know f**k-all about it except that the diagnosis rate is skyrocketing.

And then you’ve got my kid having what appears to be a tantrum on the floor of the waiting room.

And, you know, “he doesn’t look disabled.”

He looks like a kid behaving badly.  I get it.

Short of putting him in a t-shirt that says “I’m not misbehaving; I have autism,” I don’t know what to do about that.

Autistic people don’t, as a matter of course, look different from neurotypical people.  Unless he’s in full-blown Aspie mode, rocking and making his little noises, he pretty much looks like any other goofball kid his age.  This is both a blessing and a curse.  Of course it’s great that he can “pass” for neurotypical.  On the other hand, sometimes I wish there was something about him that signaled to other people to be more understanding, more patient, more tolerant.

To the anonymous commenter, and to those out there who see autism as the diagnosis du jour, I say this: while I hope that autism never touches you personally, I ask for your open-mindedness about what’s happening in my family.

Failing that, you can bite me.

We are doing our very best to help our son function as best he can, and to help his experience of the world be less stressful for him.  Autism spans a range of behaviors; this is why they call it a spectrum.  We are fortunate that our son is very high-functioning in most ways, and is even very gifted in some areas, but he will always struggle in other areas.

He is autistic, whether you see it or not.


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1 Feedback so far. to But He Doesn't *Look* Disabled

  1. MmeZeeZee on April 7th, 2011 2:03 pm

    I registered at honestbaby just to post this comment. I used to read a lot of parenting blogs and message boards. Now I only read some. And just today, I was thinking: I believe that some kids are developmentally disabled. I’ve seen autistic children and I’ve read a lot about autism. I have no doubt that it exists and that families have a lot to deal with.

    So why can’t bloggers and posters get across what is happening in their lives? Why do we read about a tantrum with kicking and screaming in the grocery store, when that happens to me and my (definitely neurotypical) child still at four?

    Why am I reading about, oh, spending two hours swinging when I know that my own (if not neurotypical, certainly near the range of normal) child can bounce literally for two hours?

    I feel that some clinical diagnostic criteria for autism are very clear, but bloggers and posters seem to forgo those and talk about things that so many kids do, like call their mom by her name instead of “mom”, or oh, refuse to wear anything but one certain favorite shirt.

    I remember one person that once posted that perhaps it is hard for the parent of a disabled child to see what is part of the diagnosis and what can be normal. And another parent responded that it’s partly a matter of scale: what is normal at the age of three becomes a serious issue, a symptom, at the age of six. When one incident is described, the poster or blogger might forget to mention that it was the tenth time *that day* that she incurred bruises from a tantrum.

    And of course you posted that you don’t focus on the negative, which frankly, is confusing. Because on the one hand, people accept your word for your child’s diagnosis, but on the other hand, they aren’t seeing any reason for a *diagnosis* in your writing.

    “To the anonymous commenter, and to those out there who see autism as the diagnosis du jour, I say this: while I hope that autism never touches you personally, I ask for your open-mindedness about what’s happening in my family.”

    I know that autism has existed long before the numbers began to skyrocket. And I do feel for parents that are dealing with autism and who face the skepticism about the numbers on a personal level. Even if numbers are exaggerated, SOME children will have autism. And those families deserve to be taken seriously.

    (Which is why I would normally not have this conversation with a person in a family affected by autism. But you wrote the article.)

    But.

    It is a diagnosis du jour. That implies that it’s overused to the point of being almost meaningless in some circles, NOT that autism doesn’t exist. I know two families with children that do not stim, do not tantrum, do not have trouble interacting socially, and who do well in school, who have suggested those children have autism. Because they didn’t behave. One, because she didn’t pay attention (isn’t that ADD? Not that the expectations of attention were age-appropriate. But anyway!).

    Is that fair to your family? No. But it’s also the environment in which people are processing information about autism.

    To give you another example, we were at an Autism Awareness Table recently because they had balloons so I had to drag my kids away from it. My daughter asked what autism was. And you know what the lady said?

    “It’s when you have trouble learning.”

    Yes. That is what she said. If I hadn’t been so absorbed in dealing with the balloon situation, I would have corrected her.

    But this is my long way of explaining that I think this is a great article, and my side of this story, as well as saying, I’m sorry. Because when I talk about how normal kids do not deserve a diagnosis, I am talking about NORMAL KIDS. Not about your kid. When I say that something is over-diagnosed, I’m talking about the OVERS, not about the true diagnoses. When I don’t realize your child is autistic and you tell me and I express surprise, it’s not disbelief. It’s just that–surprise.

    FYI, I was tested for autism as a child. As an adult I may have Asperger’s. May not. I’m not depressed so I probably fit into that large group of people that meet the clinical definition of Asperger’s but who do not have a disability because we are fully-functioning, happy people.

    Weird, but happy and functioning. I hope your son has just such a future ahead of him. 🙂

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