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December 1, 2016

The ambivalence that is autism and why it breaks my heart to watch my son struggle through it

Today I watched as my son struggled to adjust to society's expectations. He is cognitively there, where he understands judgment; he understands expectations and now that he is becoming a teenager, getting older, he's trying so hard to repress that part of him that still wants to be a little kid. He tries to deny himself the simple pleasure of watching a show or a movie that he should have already outgrown but hasn't yet. He has outgrown some younger kids' shows. He can now enjoy a regular movie, the type usually favored by older kids but he still likes to watch the little kids' shows, not all of them but quite a few of them. And it's hard to watch my boy go through all of this. Do I tell him "just watch it" but explain that kids his age are not usually into these kinds of shows or movies anymore? Do I just let him be? Do I stop him? I never stop him. I try to prepare him because he is aware. He knows what's trendy and "in". He knows how to "appear" interested in what his peers are following but, when he's around family, he goes back and forth between different types of shows. In other areas, he is hitting major emotional and developmental milestones. As early as 5th grade, he started expressing curiosity for dating and girls. He's been talking a lot about how we would treat a girl on a date (like a gentleman, he says) so there are areas where he is more or less aligned with same-age peers, at least cognitively. His speech and language impediments are significant hurdles to actually developing friendships but he is showing a natural desire for closer relationships. 
If life was not so scripted and judgments so harsh, I would not have to worry about this at all, about the fact that my son enjoys watching shows intended for a younger audience. There's no harm in wanting to do something that is better suited for younger kids but life is not that way, is it? I like to watch kids' shows. I like to read kids books but I guess I've already demonstrated my "normalness" if that's even a word so really, I have nothing to prove. I grew up hitting all the milestones and such on time, did not suffer from delays, was not diagnosed with Pervasive Development Disorder (now merged into autism label; they don't separate them anymore) so I'm judged differently. It's not the same for my son. He is constantly being evaluated, constantly being assessed and I have to keep that in mind. I have to remember what I'm being told by different groups of people and, I have to do what's best for him, not just what's best for him now but what's best for his future. I have to keep peeling the different layers of his character to find out how much to do, how often, how far to go, how to plan.
This is not a joke. And it's complicated. Sometimes I don't know what the correct answer is, don't really know whether I should push to "normalize" him at the expense of his true self. I want my kid to be happy. I want to be his mom, love him and help him. But I don't really want to deny him the things that make him smile. So I think I'm going to try explaining the rules we live by out there in the world, so that he understands the reactions he gets from people: the surprised look, the puzzled frown, the pitiful or intrigued scare. He's experienced them all. But I want him to be himself. I want him to accept himself, be comfortable in his own skin, have self-confidence. How can you love yourself if you are repressing parts of yourself? There has to be a better way. I want him to understand the rules enough to survive this world but have the space to be himself.
And that's how I'm dealing right now. I love my kid and I hated what I saw today: How he pretended not to like a movie because it was geared towards a younger audience but ended up rocking to the music when the final credits rolled. He hid his face, asked to go home but still watched it. Maybe he really didn't like it and oh! that's a good thing some will say. He's moving beyond that now. I should be celebrating but today, I got to live the ambivalence that is autism in s very direct, personal way and my heart literally ached for my kid. Literally. That's why I took the pictures showing him trying to refrain from smiling and finally giving in to smiling and moving to the music... At the very end, when the credits were rolling.

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