Saturday, May 18, 2013

The Cost of "Almost-Normal"

I was poking around online one day, thinking about this whole Asperger's vs. High-functioning autism thing (Ethan's teacher's: "We see him as rather 'Asperger-ish'"/Ethan's developmental pediatrician: "He has classic autism but is very high-functioning"). People have asked me recently, and I've wondered too: Just what is the difference between Asperger's and High-functioning Autism (HFA)?

People talk about the lack of early language delay in people with Asperger's, or that people with HFA must show impairment in these three categories: social interaction, communication, and restricted repetitive and stereotyped patterns of behavior, interests, and activities.

But this quote by Tony Attwood, a clinical psychologist in Australia and one of the world's leading experts in Asperger's, stopped me in my tracks.

"The difference between High-functioning Autism and Asperger's," he said, "is happiness."

What he meant by that, in a nutshell, is that people with Asperger's have more of an inner drive to make social connections, and are more aware of the way they have trouble making those connections and the ways they are different from others -- and this hurts.

The difference is happiness. It pained me to read the words. It pained me, because I thought of those I know who have people close to them with Asperger's, or those who feel they may have Asperger's themselves, and I know the way they struggle.

I thought of the way people present autism as a spectrum, that it runs from low-functioning to high-functioning to PDD-NOS to Asperger's (or something like that) and that when it's all on paper, any parent new to this whole thing would say, or would think, if there's no cure, Asperger's is the goal. It's the closest to normal!

The question came to me just like that, almost a slap in the face:

Do I want my child to be "normal," or to be happy?

This is, I believe, the great tug on the hearts of all parents who have children on the higher end of the autism spectrum: the greater their child's awareness and level of cognition, the more recognition that they are not like everyone else.

We want, how could we not, them to rise to their highest level of functioning possible, to be able to get along in this world, to have meaningful relationships. We see it as a milestone when our kids long to relate to others rather than to stay in their own world alone, yet for people with autism, that very longing can be what brings the most heartache.

And so, in all of this, how to celebrate Ethan's successes? All I know is, as tempting as it may seem, they can't be viewed only through the prism of inching closer to being a typical kid. They can't, because he's not typical. And some of these baby steps towards being a "regular" person are, as much as it hurts to admit, tiptoes towards different kinds of challenges.

To me, it's almost like the innocence of a child vs. the cynicism of a grown-up. Do I want my child to be blissfully unaware? Those with greater impairments from autism do not see the way others see them. Their lack of knowledge cushions them from so many things.

Yet how can you not route for your child to make gains and strides in thinking and functioning, in independence and awareness?

These are hard questions. There are no easy answers.


Deenie said...

This is a tough one but it's spot on. My struggle is that my son seems so "normal" that it's hard for people to understand what's going on and easier for them to judge when he has a meltdown or something. He doesn't have any obvious stims or anything that would let ppl know that he has any kind of disorder. I have a co-worker with a son who is autistic but as soon as anyone sees him they can tell that there is "something". I see how much lee-way he gets from other people. I see how people accept his quirks and forgive his temper. He gets passes that my son never gets. It sucks to say it or even think it, but in some ways, that boy has it easier. Yet, I would never wish for my son to be any more affected by autism than he currently is.

Unknown said...

This was a very good discussion of the differences. As the mom to a young man who is definitely HFA (in my opinion at least) I would have to point out that he is very happy. He thinks he has friends (not so much) and has an amazingly good (sometimes inflated) self-esteem. Most Aspies I've met seem a lot more argumentative and confrontational than my Joe. In the long run, though, they can call him a monkey as long as they get to know him. :-/

Abstract Lucas said...

That comment about being normal or being happy resounds strongly with me ~ my eldest son (age 11) has severe learning difficulties but does not realise he's 'different' ~ he knows other people talk and feed themselves and walk and read and write, he just somehow does not seem to think any of these conventions apply to him! But he laughs every day. A big slice of chocolate cake or splashing in the bath or playing with the dog can completely make his day, so for him his life is pretty straightforward.
Take care

Melissa said...

My own son with Aspergers is keenly aware of not fitting in on the one hand and yet everyone could be a 'friend' on the other hand. It's scary for us because he wants soooooo badly to have friends and be normal, and thus is ripe for being taken advantage of. As if what he is isn't good enough? I've read some of Atwood's stuff. I can see the whole 'happiness' thing. No-one cuts my son any slack. He's big for his age, and everyone makes assumptions about him. INCORRECT assumptions.

Karen said...

Melissa, any chance you live in/near NC? Just curious as I also have an 11 year old boy with similar circumstances.

Deb said...

Thanks for the feedback. I had the feeling this post would strike a chord since we've all been there, we'll all seen how hard it is for the people in our lives who have an "invisible" disability like Asperger's. People think it's a cop-out, that it's just throwing around a label to make excuses, and that is SO not true.