The Australian Government, in its infinite alleged wisdom are setting up a committee to look into Autism and enquire about it, why it’s there, what needs must be done, and all that other balderdash. Needless to say, this committee is very likely comprised almost entirely of ageing, neurotypical, cis white men. Mostly because the government is mostly comprised of ageing, neurotypical, cis white men.
None of these people likely know what having Autism is like, have more than a few pre-conceived notions about it and, much like too many neurotypical people over sixty, a complete and utter refusal to learn anything new. If you are outraged by this appraisal, I probably am talking about you. Deal with it.
Those of you here for the long haul might be aware that I’ve written quite a bit about Autism, the pre-conceived notions about it, how it’s treated in the Media [say it with a sneer!], and what it’s like inside my own head. Those of you who don’t… Hello. I’m a mentally disabled person with a whole peck of opinions about how the neurotypical people out there treat people like me. In case you haven’t already guessed by the title, I’m about to go off about all of this.
My mental disability is Autism. I don’t look Autistic and, at this point, I am sorely tempted to ask anyone who says so what Autistic is supposed to look like. I’m one among many who was diagnosed as an adult because of pre-conceived notions when I was a child. [See: Tropes Versus Autism, and Autism and Me, Part One: Public School Attitude for further information on all of that noise] I, like many people my age, got a diagnosis whilst attaining ones for my children. I, like many people my age, have developed a series of coping mechanisms in a semi-successful attempt to blend in.
Those coping mechanisms, once collected into a semi-functional heap, is called “Masking”, and it is an utterly exhausting ordeal to go through on the daily. Trust me, I live in it. As an Autistic person, I had to develop strategies to avoid being pummeled and then victim-blamed for being “too weird’. I developed some of these strategies just to make it through the day. I created them so that I don’t “look Autistic”.
Many of them are so ingrained by now that I’m mostly unaware that I’m doing them. If I’m no longer aware of my Masking, how the flying hell is a complete stranger with a medical degree going to spot it?
That, right there, is one of the barriers I think about when I read that the committee in question is looking into the barriers to consistent, timely, and best practice diagnosis for Autism. Another good one is a little thing I call “pigeon hole-ing”. Let’s stick a title font on that.
Pigeon Hole-ing And What It Means
Way too many people think of Autism as a sliding scale from a “Good” [aka “Hardly Autistic At All”] side to a “Bad” [aka “Hella Autistic”] side. If you want the diatribe on that outdated way of thinking, check out Autism and You: Things I Want Nypicals to Know for a brief primer on that.
There is still a tremendous amount of people who like to cram Autistic folks into pigeon holes. I get it, they understand terms like “savant” or “low functioning” or “highly functioning”, and even “Asperger’s” and really, solidly wish it could stay like that. Here’s your pigeon hole, where’s my crowbar so I can fit you in…
People, as you might suspect, don’t fit in pigeon holes. Those things are made for freaking pigeons… We do not fit neatly on sliding scales and most of us just don’t fit definitely anywhere. Just like an Alcoholic is still an Alcoholic when they’re sober, and Autistic person is still Autistic even when they’re having a good day or Masking their theoretical butt off.
Making checklist that basically say “You must fit these categories to qualify” is one hellishly huge barrier to proper diagnosis. Please, for the love of mercy, can we look at commonalities and then examine the co-morbidities? Can we look at all Autistic folk and not just an arbitrary set?
That’d be wonderful.
Great. Let’s move on to the next scary part: Why is there so much Autism these days?
Short answer: there isn’t.
Long answer: What we’re facing now isn’t so much an epidemic of Autism, but rather an epidemic of diagnosis. Autism is more noticeable because the pressure is up and the ability to handle that is way down.
It’s getting scary now because we have a louder, more stressful environment, with more to distract and more to combat from the day to day. It’s getting noticed more often because the kids who used to be able to cope in classes of 15-20 are now unable to cope in classes of 25-40.
Try this trick: Think of white cars. On your drive home, you will notice them and think to yourself: “Hey. There’s a lot of white cars on the road.” There’s no more white cars on the road than there were yesterday. You’ve just now paid attention to them.
No, the solution to Autism is not “stop thinking about it”. Criminy. The thing I’m saying here is that there seems to be more of it because people are more inclined to notice it. Autism has always been among us. There has always been that weird kid who knew everything about that one thing and never looked you in the eye and was always a little off.
They used to call them changelings in the middle ages, and the “cure” was to torment the poor little darling until they “return to normal” – also known as “Masking so hard they could puke”. [ABA is no different, by the way. It’s not a cure, it’s not therapy, it’s just torture window-dressed up to look beneficial.]
There is no cure for Autism. What there should be is understanding of Autism. Just as some kids have dyslexia, and can get help for that, there should also be help for kids with other learning disorders.
As soon as the understanding begins, so too can acceptance. I’m willing to bet all the money I have in the bank right now [$40] that if an entire society can learn how to accept and help Autistic and other mentally disabled people, a decent percentage of the perceived ‘problems’ with them will just vanish.
We don’t know, for instance, how much of the co-morbid social anxiety is a product of Autism and how much is a direct result of the people around the Autistic person. How much of the depression is the same? We can’t know until the entire society takes part in supporting Autistic folk and other mentally disabled people.
I’ve said my piece about gender bias and misdiagnosis over in Equally Sick, Unequally Seen. Go spend a good twenty minutes on that.
The Real Problem With Autism
It’s not that it’s a big scary thing happening to the youth of today. It isn’t some ghastly eugenics thing where normal neurotypical folks should “out breed” anyone else. The problem, at least to me, is that people everywhere are scared of Autism.
They make Autistic folks into The Other, and Not Like Us, and therefore get angry at that which they choose not to understand. You can’t just teach people to celebrate Autism, you have to give them reasons.
Maybe, if more Autistic people were celebrated, the rest of everybody would have reasons to celebrate Autism.
The way it’s seen now is a problem. Neurotypical parents with Autistic kids are told that they are dealing with a burden. Schools and teachers are told that they have to employ forty hours a week of ABA
torture “therapy” for each Autistic child, just so that child can “function” in the classroom. Teens with Autism are told that they should “smarten up” [read: behave like normal people] if they want to “make something of themselves”.
Adults, like me, who have received a diagnosis past maturity, are frequently told that they are “faking it”. Often for attention.
The problem isn’t Autism.
The problem is that too many people have a problem with seeing Autism. They don’t want to, but it’s there nevertheless. They don’t like it because it’s not normal according to their world view [a world view consisting mostly of able bodied, neurotypical, cis white men, mind you] and must apparently therefore be shunned, ridiculed, tormented and otherwise made to Go Away.
I’m Autistic, and I am not going away. Neither are the potentially millions of Autistic folk out there in the world. Young, old, male, female… and every person in-between. We’re here. We’ve always been here.
All we’re asking for is the chance to be heard. All we’re asking for is for those who won’t understand to make the effort to do so.
Not one person has prospered when they are forced to conceal who they really are.
Stop being scared of us. We’re only weird.