But He Doesn’t *Look* Disabled

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

QuiGonJinnV3Wallpaper But He Doesnt *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 Doesnt *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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