Or, they might be all wrong about #autism…

You keep using that word. I do not think itmeans what you think it means.
Autism – You keep using that word. I do not think it means what you think it means.

Yeah, I know I’m a sucker for punishment, sometimes. I do things that cause me pain and suffering because it seems appropriate at the time. Like reading a book that’s full of half-truths and over-generalizations about autism. If you follow me here or on Twitter, you probably know what book I’m talking about. I’m torn about whether to post pictures of the text I’m about to discuss. I want to address specific points in the passages that I find problematic – and also rephrase them in a constructive, pro-active, and more informed way that puts autism in the context it deserves.

But I don’t want to burden all the readers (including myself) by repeating unexpurgated nonsense.

Let me be clear — the author of the book in question is the product of circumstances both beyond her control and well within her control (which she may not realize). And her viewpoint has most certainly been shaped by uninformed and exploitive “service providers” who have a lot of money to make off parents of autistic kids. They see a market, and they make the most of it. But they really serve themselves, in the grand scheme of things.

I spent a few minutes this morning reading the Introduction, and while there are major problems with a number of passages (pathologizing differences, buying into the party line about autism diagnosis stats being “startling”. Personally, I think the prevalence of neurotypicality is a lot more startling, but I digress. It’s hard to know just where to start — so far, the book reads like the logical product of mainstream “autism” thinking (marinated in a perpetual ideological bath of Autism Speaks “Truth-Speak”). But I should start somewhere, so let me pick out just one of the salient points that could use a little reconsidering.

Because, by God, we do need to reconsider autism and how we conceptualize it. From the bottom up. ‘Cause, you know what? There are a whole lot of autistic adults who went through the extended trajectory of autistic development — which to the untrained eye looks improbable, even impossible — and we are living proof of what’s not only possible with an autistic development trajectory, but also how wrong-headed the mainstream conception of autism actually is.

There are a lot of people who are suffering from mainstream misconceptions about autism. That goes for parents and children, alike. Autistic and non-autistic folks, alike. There’s too much money being spent on the wrong stuff — trying to cure autism, instead of addressing the core underlying external issues which turn being autistic into pain and suffering for everyone in the vicinity of the autistic experience. We’re not looking deeply enough. We’re only looking at our surface experiences, and we’re judging them based on our emotional reactions, as well as our physiological processes.

And it results in pain.

Take, for example, the book’s description of mothers of autistic kids:

typical look of mothers with autistic kids

… what might happen next… One would think it’s All Autism’s Fault, because “it” makes these mothers’ children behave in unpredictable ways. They might start jumping around. Calling attention to themselves. Scream. Start climbing something. Run away. Anything, really. And then what? People will stare, point, talk, criticize, and the parent(s) will be ostracized instead of being supported. Because clearly, they’re not “fit” parents. Every-(neurotypical)-body can see that, plain as day.

It’s a problem. Indeed. But isn’t the real problem the reactions of everybody around? The people judging, the people finding fault, the people pressuring the mothers to have “normal” kids…?

Seems to me, that kind of hyper-vigilance is less necessary in an environment where kids are allowed to be kids. And where the range of acceptable behavior (for kids, who are still developing, fer chrissakes) is a lot broader than our modern version of “seen and not heard”.

Divergence is less socially impactful, as well, where kids’ behavior is pro-actively managed. When autistic kids are given clear instructions on what the appropriate way to behave is, what the right things to say are, and they’re actively kept in line by firm discipline, developmental differences can be a lot less traumatic for everyone.

Impossible, you say? You can’t reason with autistic kids! You can’t pro-actively manage their behavior! Nonsense, I say. My own parents did that. They were firm in their boundaries, firm about the requirements of civilized behavior, and they were taskmasters when it came to how we kids (three of the five of us clearly on the autism spectrum) comported ourselves in public.

Did my parents catch all kinds of crap from the rest of the world, for how we behaved when we acted out? Oh, you betcha. And it wasn’t easy, because we were seriously a handful — and there were three of us autistic “firecrackers” among a total of five kids. But my parents kept the pressure on, kept us in line, disciplined us as necessary, and they were always very, very clear about how to behave and what to do/not do.

My childhood was at times excruciating. For both myself and my parents. We all caused each other a lot of pain, most of it accidental. But there was never, ever a question of whether or not I’d ever amount to anything. Because there was a clear requirement that I’d follow a certain trajectory to adulthood, whether it was comfortable or not, whether I seemed immanently capable of doing it or not.

There was an overarching assumption that children had to be taught how to do everything. There was none of this modern assumption that kids are inherently capable of figuring things out for themselves. It was known and accepted that kids were works in progress, and it was the job of every single adult to bring them up in a way that produced productive members of society. Life was about contributing as best as you could, not about expressing your individuality. It was about making a positive difference in the world. And to do that, you had to be taught. You had to be trained.

And the parents took that on.

Ironically, after raising 3 neurodivergent kids, my parents still look 20 years younger than they are. They don’t have those dark circles under their eyes. They don’t have the darting looks of hypervigilant folks battling socially-created PTSD. Were they perfect parents? Nope. They really made my life hell, while I lived in their home under their set of rules. I have all sorts of residual emotional crap I still have to wade through, that they set the stage for. I split from them when I was 18, and I stayed away for about 10 years, till I got on my feet. We were at extreme odds in so many ways, and we all had to grow up a lot, before we could peacefully co-exist.

But they didn’t blame autism for their woes. That was just part of parenting. And kids who were behavioral challenges with cognitive development issues were… just kids who needed to be trained in specific ways. I wasn’t pathologized with a condition that was portrayed as a permanently victimizing force. And while my mother did play the poor-me card more times than I can count while growing up, it wasn’t autism’s fault. It wasn’t some dread developmental disorder that preyed upon my brain, that was sucking the life out of everything.

It was the fact that I wasn’t behaving or making choices that matched what my parents wanted. And the consternation my parents felt about me, they also felt about my neurotypical siblings, who — trust me —  made far worse decisions than I ever did(!).

So, yeah, playing the autism martyr doesn’t get very far with me. I know it’s in vogue, these days. And it seems to carry more weight in urban areas, where advanced civilization is supposed to have eradicated all those messy organic conditions that are hallmarks of rural American ideological backwaters.

Bottom line, kids of all stripes — neurodivergent and neurotypical — need to be trained how to cope and conduct themselves in the world. Putting a roof over their heads and food on the table and games in the Wii or PS3 won’t automatically produce productive adults. Kids need to be… raised. That hasn’t changed in aeons.

So, yeah. That whole “ashy-faced mother of autistic kids” identity doesn’t really do us any good. It’s not the autism that’s at fault. This is a cultural creation.

And I’m really tired of autism being blamed for it.

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