In Autism circles, we talk a lot about the Autism Mother. Typically, this person writes a blog and/or publishes posts on Facebook or Twitter to tell anyone who will listen about how his or her child was robbed from them due to Autism. Many of them insist it was the MMR vaccine, but others, who feel a bit more enlightened by science, are taken in by the Autism Speaks mantra about how Autism is a growing epidemic.
An epidemic that must be stopped at all costs.
For some background on why we get irritated with the Autism MomTM syndrome, visit this link to learn more about the Autist who created this term and why we take issue with these moms (or dads).
See, part of the reason why we get annoyed by these parents is because they make the narrative always about them. When you’re a parent, though, isn’t it supposed to be about your kid and what he or she needs, and not about what you as the parent needs? But for some reason, society allows this inverted family structure to continue: mom’s life sucks because of her child’s very existence.
You don’t get to do that with other issues without someone doing a PSA about it. I vaguely remember they do Public Service Announcements about not emotionally abusing your kids that are basically just this narrative: children hear you; don’t hurt your children by what you say. The words “I wish you were never born” come to mind…anyone else remember this ad that used to play?
Anyway, despite the fact that we’ve been told for years that this emotional abuse through words is wrong, for some reason, society gives these moms a “pass.”
And the thing of it is, the longer they whine and complain and are given all sorts of pats-on-the-back about how hard their lives supposedly are…that’s when the Eugenics monster shows up again, trying to pull us Autistics out of the gene pool so as to make neurotypicals’ lives better.
No-friend-to-Autistics, Simon Baron-Cohen a UK researcher who has regularly made fun of Autistics and patronized us whenever we try to question his research (he’s the expert; he’ll tell you about yourself) posted a tweet late last week about wanting a “mother with autism” who has already one autistic child and who is pregnant now to come to Cambridge for an ultrasound: https://twitter.com/sbaroncohen/status/930764527091769344. He seemed shocked when women didn’t break down his door for this privilege.
See, we’re not easy to fool. He’s a researcher who doesn’t seem to like us Autistics very much. And trying to figure out who is likely to be Autistic while the child is still in the womb? We did that already and look what it did to our “cousins” with Down’s Syndrome. (Side note, head here to see a fantabulous ad campaign designed to help moms to stand up to the doctors who will harass them to abort their babies with Down’s Syndrome; if Baron-Cohen figures out how to predict us, we’re going to have to join in on that campaign…).
Instead of researching who is likely to BE us, why not focus on improving our lives when we’re here? I mean, heck, self-driving cars are coming, grocery delivery is a thing in many areas, and more and more of us can work at home…and none of these things were by design to improve the lives of Autistics. They just happened because people saw a market (not us) and here we are, bouncing up and down (or spinning, depending on our preferences) with joy over what is coming to market. Our children’s lives will be easier than our own because some amazing inventors and entrepreneurs are inventing things that will help Autistics without even trying to per-se help us!
Imagine what we could develop if we actually focused research on making Autistic lives better?
See, this is why we have our grievances with the Autism MomTM. It’s not because those of us who are Autistics and moms aren’t also struggling with our Autistic kids from time-to-time. We get it. Some of us are runners when we’re little because we don’t know how to process all the feelings we’re having. That is hard!
But you know what the root of a lot of our problems are? We’re simply living in a society not made for us and, at times, is actively hostile.
We run because we can think of no other way to get away from whatever stimulus is overwhelming us. We bite because it feels good and it helps us to calm down because we’re feeling overwhelmed. We kick at you because we need you to just stop talking. And so on.
This is hard because we were told good parenting involves saying things like, “it’s not that loud,” when we really have no idea how loud something is to someone else. Good parenting, we’re told, is to demand respect from your child, not understanding that sometimes a child can no longer process words and can no longer control his or her body at times when he or she feels overwhelmed.
We have to turn parenting on its ear to parent Autistics.
Or so it seems.
Good parenting is also defending one’s child when he or she gets hurt.
A kid beats up your kid, and you had better be on the phone with that child’s mother or the school or whomever.
Society regularly hurts us Autistics, and when we’re too little to understand, it’s hard. It doesn’t get better until we learn we are Autistic and that what we perceive as the world isn’t the same as how everyone else perceives it. When we learn that we are different, we can start to ask for what we need so we don’t have to run, or bite, or kick.
What we need is someone to help our voices be heard in case someone like the Simon Baron-Cohens of the world, won’t listen to us because we are Autistic.
We need your privilege, parent-of-Autistics.
The Autism MomTM can leverage her privilege as a (often) white, middle class woman who has such an easy life, relatively, and she’s comfortable and feels entitled to be comfortable. If she could simply imagine living somewhere where she finds life harder, like another country where she doesn’t speak the language and gets sick on the food so she ends up with a limited diet, then she might get a glimpse of what it’s like to be us every day.
Then, maybe, she’d see, that it wouldn’t be better had we never been born, but rather, she’d say, “Well, couldn’t we introduce another food or two to the local cuisine? Like chicken strips? (A lot of us are very in love with chicken strips…hehe…many stories of chicken strip consumption by Autistic kids and adults.)” She might also say, “You know, I noticed the music is really loud on our street. Maybe I should talk to the neighbors about quieting down since it’s really hurting my kid a lot.”
And then she’d probably find, once she sets up her nice little ex-pat community, she is really, really happy with the child she has, whether he or she speaks or not. See, we’re delightful people, and we think we’re quite funny. But people in pain, being crushed by a society that treats them as throw-away, well, they get grumpy. They bite, they kick, they run.
People who are silenced fight back because words, whether delivered verbally or in writing, or via gesture did them no good.
And we want our moms and dads to lead the charge until we can do it for ourselves.
Please, please stop saying how wretched we make your lives. Instead, focus on what society is doing to mess up your kid’s life. Then we can focus the research on the really useful stuff, like these self-driving cars, and getting them priced in a way we average folk can actually afford.
And you can’t tell me you don’t want a self-driving car, too!