Monday, October 24, 2011

Autism and adolescence: painful synergy

Yesterday and today, I had a conversation on Twitter related to this post about using the word "autistic" as an adjective or a noun.

An autistic adult noted, "I'm an adult autistic and don't think I have said that it's not a disability now that I've got more perspective on coping."

I commented back that, "I think it's possible to have a disability that has positive aspects. I know autistics who consider it disabling."

And another autistic commented that, "I love my . And I acknowledge that it is . Esp. sensory issues and linguistic processing."
This conversation turned out to be one of intense interest to me even more than would be apparent thanks to this sudden non-sequitur (to me) from TH this morning as we were doing schoolwork:
If I could make it happen, I would make it so that no one ever has autism, ever again.
This is from the same child who, only a few weeks ago, sent the following to an autistic boy to show his support:
We talk about it all the time, my parents love and accept me the way I am. But there are others that are like us. Hundreds. Thousands. Maybe even millions! But we must learn to love and accept ourselves! It doesn't matter if were different, it doesn't matter what people call us! And it doesn't even matter when they insult us! Being different is hard at times, but being different is a gift, too! It makes you unique in a good way! So take this advice, Noah! From now on don't feel ashamed or useless! Whenever anyone insults you or treats you badly say: I'm proud of who I am! Or I'm not perfect but nobody is, and I'm a good person! Now, you know that it doesn't matter if your different, but it matters how you treat yourself and how others treat you!
Based on his statement this morning, my son is clearly grappling with his own reality--something he cannot change--while still not wishing his reality on others. I'm sure my face--well, maybe I'm not sure--registered the shock I felt from his observation. I asked him to elaborate, and he did.

I can tell that much of what he was saying arose from his cogitations after watching the Lesley Stahl 60 Minutes segment on autism last night. While the narration of the segment and commentary from Stahl left something to be desired, TH clearly felt a connection to the children in the story. And when Temple Grandin had her brain imaged, he was exclamatory, wondering what was different, how it was different from what they kept calling "normal" in the segment. (As an aside, when did Grandin become someone who has "Asperger's"? I though she had a language delay? I don't buy into the diagnostic divisions, but the current distinction is primarily the language one.)

He expressed to me how hopeless he feels about ever making friends. He doesn't want people to have the same struggles with social interactions that he has. He doesn't want people to find it hard to talk (not a problem for him) or not be able to talk at all. He's anxious and a little sad that he has "only" ever made two friends, and I think he's concerned that even those two may be slipping away thanks to the twin gulfs of distance and time.

Sigh. I know that feeling alienated and isolated comes with the territory not of being autistic, per se, but of being pre-pubescent, peri-pubescent, damned near pubescent. He's expressed other anxieties that he doesn't relate to autism, talked to me about just not feeling quite right in his head, feeling strange and a stranger in his own mind. That sounds alarming in black and white, but I think what he really means is that he feels confused. Who wouldn't feel confused as middle school approached, as puberty's shadow grew on the horizon, complete with all sorts of (to him) horror stories (not from us) about the foibles and confusions of adolescence?

But he's also grappling with being different. He knows he's different. One of the first lucid questions he ever asked me was when he was in kindergarten, again a seeming non-sequitur: "Why am I so different from everyone else?" It was heartbreaking at the time because he was collected enough at that moment to ask a question, and it was the first one to come to his mind. But the answer, "Because your brain is made differently. That's not a bad thing, but it is different," was one that no child--but especially our child--was going to encompass without considerable repetition and explanation. Yet only a few weeks ago, he was proud enough of his difference to write the way he did, to support someone else with a similar difference.

A couple of weeks ago, Dubya observed that "The big difference between turning into an adolescent and turning into a butterfly is that with the butterfly, no one can see you." TH's dual specters of being different (autistic) at a time (adolescence) when many people simply don't want anyone to notice them are a potent combination acting on a plastic, impressionable, sensitive mind. One that's so sensitive, he wouldn't wish this combination on anyone else.

So, we talked. We always talk, although for once, we weren't having an Important Conversation in the car. We talked about friends, how many you need, how brothers and family can be friends, too. How college, with the way it (in theory) raises appreciation for knowledge and reduces emphasis on the finer points of social interaction, will be a place where he'll find friends, find his own. That autism isn't going to prevent that for him. We all have our people, somewhere out there. It just takes the right environment for the good to outweigh any negatives. We even talked about how autism may well underlie some of the way that people advance in culture and technology, how autistic people, in spite of the pain that some sectors of society may inflict on them, are important to humanity, too.

He understands that his autism has benefits, and he understands that there are negatives for him, too. Today, I think hormones and 60 Minutes and maybe a bit of loneliness on a beautiful fall morning led to his expression of a wish that whatever his reality is, he wouldn't wish it on anyone else. Strangely enough, his vocabulary word today was "catharsis." Thinking that perhaps scribbling out his worries in his journal might indeed be a catharsis for him, I had him write a second entry for the day. And all he wrote (given here with permission) was, "I wonder if I will be different in college." That's it. That was the entry.

No one said adolescence would be easy. It almost never is with that much change, the epic reconstruction and rebuilding of a child into an adult. I know mine was a mess for me, from the inside out. But it's looking like autism and adolescence may be a synergistically painful combination for our boy. Insights and experiences from autistics in the middle or on the other side of that metamorphosis are welcome.