Child 1 was diagnosed when he was 2 and 3/4. (He's 8 1/2 now) The first thing I did after the dx was to go online and find a support group. I found a great place, with great people, but as so often happens with online communities, particularly ones that are unmoderated, things went horribly awry and we needed to find ourselves a new home. So, I started my own board and a bunch of us jumped ship. That was 4 years ago and today we're a very tight knit, very close, VERY exclusive group of women, all of whom have at least one child somewhere on the spectrum. We call it Autism Island, or "The Island," and honestly, I have no idea why. We come and go, depending on what's going on in our lives, but whenever we come back, we're always welcomed with enthusiasm and open arms. We've formed some very unlikely friendships because of autism. I'm a dirty, pinko hippie from Berkeley and I have friends who live in the deep south and go to Tea Parties. We would never in a million years be friends under normal circumstances, but as long as we don't talk about politics, we're good. I suppose you could say that having formed these relationships is a way you can put a positive spin on autism, and that's true, but that doesn't change the fact that it still fucking sucks.
I've known a lot of these women for the whole 6 years that we've been on this autism journey; I've "watched" their children grow up and they've watched mine. In the beginning there was so much uncertainty; none of us had any idea what we were doing, our kids were so small and so fucking dysfunctional and what the hell would the future bring? Would they ever talk? Would they ever poop in the potty? Would they ever sleep through the night? WTF is with the hand flapping? Would they ever TALK???? We've agonized together about vaccines. We've tried therapies, we've tried vitamin supplements, we've tried Hyperbaric Oxygen chambers. We've discussed, at length, every detail of everything we've done, compared notes, watched progress, made suggestions. Some of them work, some of them don't, we've learned to stick with what works and dump what doesn't, and fuck 'em all if they disagree with any of it. Whatever else, though, we've been in it together.
First, a word about Child 1, although this post is not about him. He is awesome. So, so awesome. He's kind, he's super scary smart, he's wonderful, he's so FUCKING gorgeous. He's doing really well, but he has autism. He makes weird noises and he whispers to himself constantly. He'll always be "that weird kid." He may never "fit in." He doesn't understand NT kids and they don't understand him, but he'll find one or two other kids who "get" him and who like him despite his weirdness and he'll probably be fine. I worry about the teen years, but as for right now, he's awesome. So, so, SO awesome. Some of my friends haven't been so lucky, though, and this is the point of why I'm writing this. They haven't done anything very different, they haven't tried anything that we haven't tried, their kids are just as wonderful, just as beautiful and just as awesome. They work just as hard, probably harder, than we do, it's just that their genetic "roll of the dice," as it were, didn't come out as well as ours did, and it's not fair. It's not fair, the arbitrariness of this thing. It's not fair, the uncertainty that we're still plagued by, the new symptoms and behaviors that crop up out of nowhere. It's not fair that nobody in the medical or scientific community can give us any answers about the whys or the whats or the hows about this thing. We're on our own, us autie moms. We've only got each other and sometimes that's just not enough. I think about these moms who are my best friends in this and I wonder if they're bitter because my kid is doing well. Honestly, I would be bitter. I would be pissed. I would, and I do, want some fucking answers. Why does one kid do so well when the other kid doesn't? It's not fair, and it's not right. And it sucks.