Friday, August 10, 2012

Does Autism Suck?

I read this blog post from another autism dad. It's complaining about people who say that they "wouldn't change their (autistic) child for the world." I was resharing the link on Facebook, but my comment started to get lengthy so I decided to see if I could eke an entire blog post of my own out of this idea.

I'm very concerned about what autistic self-advocates have to say. My son can't get philosophical about his diagnosis yet, so I listen to what people like Ari Ne'eman and Temple Grandin have to say about it. The impression that I get, generally, is that high functioning adults with autism would not choose to be neuro-typical. But that's over-simplifying things. I don't know quite so much about Ari, because no one has made a biopic about him yet, but Temple Grandin has always suffered from crippling anxiety. You can't tell me that if she could take away that anxiety and leave everything else the same that she wouldn't do it. She just wouldn't want to give up the strengths her autism gives her to get rid of the deficits and challenges.

I've got my own psychological diagnoses. I have been diagnosed with ADHD, depression, anxiety, etc. The ADHD is the only one that I think it's fair to compare in this situation. ADHD has benefits and disadvantages.  Whereas depression and anxiety, they just suck all the time. ADHD lets me hyperfocus on a task, whether it's reading a fascinating book or trying to solve a problem or just researching a subject that I'm curious about. ADHD also kept me from getting decent grades in any math class I've taken, ever. Well, ok, except geometry. I got a B in that one. My graduating GPA in high school was 1.666. But I digress. (That's the ADHD too.)

If I could snap my fingers and not be ADHD anymore, would I? I can't say for sure. If I could snap my fingers and not have trouble focusing on stuff that I find boring? In a heartbeat.

Joseph's expressive communication is pretty limited. It's far better than it was two years ago when he was diagnosed with autism and he was effectively non-verbal, but he doesn't come home from school and tell me what he did that day without a lot of help, and he never tells me about his classmates unless I remind him who they are.

Joseph also has a genius level IQ and extraordinary spatial reasoning skills. He builds wonderful creations with his LEGOS and K'nex, or out of cardboard boxes and tubes. His teachers and therapists are always talking about how they expect him to become an amazing architect or civil engineer.

If I could choose for him, would I choose for him to be hitting all his developmental milestones right where the docs say he should, have a 100 point IQ, a C average in school, etc, in exchange for him being able to communicate more effectively? No. I don't think so. And I think that's what people are talking about when they say they wouldn't choose to be neuro-typical, or for their child to not be autistic.

But a little more talking would be super. And a little more awareness of danger. And it would have been nice to have him toilet trained before his 5th birthday. And I'd love to be able to take him to the store and not have to worry about him disappearing at warp speed if I let go of his hand for a moment.

It doesn't mean I love my son any less than I would if he was some abnormally normal kid. Every rose has its thorn. Except now they have these genetically modified roses that actually don't have thorns or something. But that breaks the metaphor that's supposed to anchor this whole post, so let's forget about them.


  1. Interesting that you posted this, because I had a similar thought cross my mind the other day. I was watching Tate at the pool playing near a few other boys the same age. they were throwing their hands in the air and i was thinking about how they all have two full arms and hands. And I wondered to myself if I wish that Tate would have two hands and came to a similar conclusion - it'd be great if he didn't have to deal with kids staring at him or following him around or being generally obnoxious, but without his challenges, the things he *can* do might not seem quite so amazing - and seeing him do those amazing things is pretty cool for us (and for him). And it's just who he is to me...the idea of him with two hands just doesn't feel like HIM, and that's not appealing.

    Part of me wonders if we're wired to love our kids the way they are, but n some cultures, kids like ours would be cast aside. Then again that is probably more a cultural necessity than because of the actual feelings of the parents.

    I have wondered this about friends who have kids with autism, too, because it seems SO very challenging. Although I'm guessing you'd get some different answers from parents whose kids are very low-functioning, I think most of us just love our babies. They are who they are, and we can't imagine them any differently.

  2. I put it this way the other day: My kid doesn't suck, but sometimes his autism does.

    When his meds are working, and he's his quirky but lovable self, it doesn't suck so much. Sure, it would be nice if, at age 15, he could safely cross a busy street by himself, and take some mainstream classes at his high school, but he loves school and enjoys his special interests. Not that his special interests make up for his social and intellectual deficits. Impressionist art? Sure. (Too bad he dropped that one.) Dental floss? Cash register receipts? Corporate logos? Not so much.

    When his meds aren't working, and he's sleeping less than four hours a night, and screaming and pounding on the walls and trying to hurt himself or others, it sucks to be him, and it sucks to live with him.

    The other thing that sucks is the general public expecting him to have some savant skill, and certain autistic celebrities encouraging this idea. They credit autism with their brilliance. Can we also blame it for his meltdowns? Some people's autism sucks worse than others'.

  3. I think Autism can suck....but my Son is amazing!!!!!!!! And I wouldn't change him, because he has some real cool quirks and non quirks. I just posted on his blog how a fellow blogger feels and I agree.

    I have Lupus and I'm Bipolar.....would I change that? Hell yes!!!! Would I change Kaden's Autism? I just can't answer that. I would change certain things.....does that make me greedy or selfish? I asked him and he LOVES himself and would never change. So....I guess we will stick with that answer.
    Sorry, for going on and on. :)