Friday, May 23, 2014

Me, My Autism, and The Community

     Autism is a genetically inherited disability. It is extremely common for Autistic parents to have Autistic children. It is, in fact, more common for Autistics to give birth to Autistics than their non-Autistic counterparts—although admittedly it is not impossible for non-Autistics to have Autistic children. I am not a genetic scientist, admittedly, but I can tell you that as the Autistic daughter of an undiagnosed Autistic man (I know he’s Autistic because he is socially awkward, extremely obsessive and perfectionistic, struggles with time management, relies heavily on calendars and alarms in spite of being unemployed, struggles to not come across as angry when he isn’t, is extremely book smart yet forgets to eat or take his medicine, etc.) whose father is ALSO an undiagnosed Autistic (I know that he is Autistic because he’s a diehard atheist, has published a couple of lengthy books, has a PhD in marine biology, taught as a professor for years, can talk for hours on end about things that interest him… and he has some of the worst social skills I have ever seen. Ask my Dad why he will never eat pickled beets again. Or, just go to Molotov Med Cocktail’s Facebook page, and PM me asking about the story. I’ll be happy to tell you if you think you can stomach a gross story), I can say for certain that Autism runs in families.

     So, with that said, why are some Autistics suddenly pretending that Autism isn’t something you can inherit from your parents? Or better yet, why is it that when some “Autism” parents find out they are actually Autistic parents, other Autistic activists are quick to say “You are not Autistic.” There’s a saying in certain parts of the Autism community—“We are like your child.” And on some broader level, they are right. Both they and the children in question are Autistic. There is no denying that the Autistic activists in question share similar sensory sensitivities, social challenges, and accommodations required to get by in the world. But maybe we’re forgetting another solid piece of advice in the midst of all this—a saying just as true, which really applies to any disability—“If you’ve seen/met/heard of one person with Autism, you’ve seen/met/heard of one person with Autism.”

     One Autistic’s experiences will vary from another’s. A lot. And about the closest people we can get to being like them, are usually their parents, who might in fact be Autistic. But when certain Autistic activists start to argue with parents of Autistic kids (whether those parents are Autistic or not), words like “murder-apologist” and “ableists” get thrown at them. When those parents disclose their Autism, they are met with a mob of angry Autistics calling them liars.

    And let me be perfectly clear about this—that is fucking triggering for me.

     When my Tourette’s symptoms started at the ripe old age of 13, people asked me if I was “doing it for attention.” People talked about me behind my back, saying I was only pretending to have Tourette’s, or making my symptoms seem worse than they were. Not long after that started, I attempted suicide and began self-harming. Several timeswith what I hope is my last attempt and act of self-harm ever at the age of 18. In other words, I don’t take it lightly when mobs of people tell people who just figured out they are Autistic that they aren’t Autistic. That, in itself, is ableism, and it’s the kind that nearly pushed me over the edge.

     The icing on the cake, however, is why I think these Autistics are telling these parents they are murder-apologists/murders-in-the-making/not Autistics. I think it’s because the parents are making some really, really good points, that goes against all of their black and white thinking. They don’t want to be wrong. They don’t want to admit that a certain Autistic-run organization is just as guilty as Autism Speaks of focusing their funds on all of the wrong efforts. I don’t want to “fight Autism.” I also don’t want to fight Autism Speaks. That is just as useless to me and other Autistics as trying to cure us.

     What is useful is providing Autistic adults the funds to live on their own. What is useful is providing coping mechanisms for Autistics—and no, I do not mean any of that bullshit like forcing eye contact or sensory discomfort in the name of therapy—I mean stuff like “How do I manage to find the spoons to make food, clean my house, go to work, go to school, and every other survival skill I need to get by?” It’s helping Autistics start businesses if they want to. It’s not spending all of the donations you receive on tearing down another organization that you fundamentally disagree with.

     Please understand I don’t think all, or even most Autistic activists are doing this. It’s just that the ones who are doing it are the loudest. And that’s giving Autism a bad name. I don’t want Autism to be known as “that disease that makes you a complete asshole to people who are on your side.” I mean, of course, it shouldn’t be known as a disease at all, but that’s the kind of ignorance we have to look forward to if we don’t start trying to have rational conversations that aren’t just a name-calling shouting match.

     So if I haven’t alienated you, and assuming you have spoons, I hope you’ll be willing to try to carry on in the community as peacefully as you can. I hope you will disagree with others as respectfully as possible. I hope we can mend things between us. Because if not, we’re kinda fucked as Autistics, aren’t we?

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