There’s a group of people out there, fairly amorphous to me because I do not keep track easily of who is who (so I hope I don’t get asked who it is), who seem to believe something like this: “If we are nice to autistic people, and we make appropriate ritualized gestures of ‘respect’ towards autistic people, and we get along socially with autistic people, and we meet them halfway, then it does not matter what we do to our children in the name of helping them, because our children are all individuals, and we are meeting these autistic adults halfway by deigning to at least talk to them.”
Some autistic people have been okay with this, encouraged by it. I have been mostly mystified by it.
Despite accusations of idealism from time to time, I tend to be a very practical person.
To my very practical mind, the above sentiments look exactly like “Parents have a right to do whatever they want with their child, all ‘treatments’ are entirely individually-based, etc.” only with lots of ritualistic social posturing all around it to soften the edges.
It’s still a very medical view of autistic people.
It’s still a point of view in which autistic people have very little power.
It’s still a very “intervention” based approach. (I loathe that word.)
It’s still a point of view that gives all the power to people who can decide to do very dangerous things to us whenever they feel like it, if they personally feel that the dangers are worth what they personally believe the benefits are.
There’s just… all the social posturing on top to make it look pretty, and to make those of us who are unwilling or unable to follow or engage in such posturing, look ugly.
I want to be clear on something, in that regard.
When I wrote Neurodiversity is not the opposite of biomed… it was not social posturing of that kind. It was not meant to legitimize biomed in any way. It was simply meant to point out that the concepts that are currently being called neurodiversity have been around longer than biomed, will probably outlast it, and are not concerned particularly with biomed. It was meant to address the self-centered nature of the viewpoint that whenever something autism-positive popped up, it was an attack on biomed, even if biomed wasn’t mentioned.
I did not write that to close some kind of gap, because all the social posturing in the world won’t bridge certain gaps.
People are dying and being damaged because of “biomed”, because of restraints, because of neuroleptic drugs, because of quacks who treat things that aren’t there while ignoring what is there, because of the long-term emotional effects of a lifetime of people trying to “fix” who we are, because of the lack of future planning entailed in a childhood spent with parents sure we would be cured by adulthood, and much more.
I don’t understand why putting a pretty face on the “everything is an individual choice” thing makes it any prettier when I look at the paragraph above. I don’t understand where the meeting halfway is happening. If simply talking to autistic people without overtly doing socially mean things to us is “meeting us halfway,” then I really don’t think that’s good enough. That’s something we should be able to expect, it’s not something we should have to feel grateful for or like people are really stretching to do it.
It seems that some people just want to get along socially because it feels nicer, less unpredictable and unpleasant, etc.
It’s not pleasant for me.
It’s not pleasant for me because I don’t have the kind of mind that can shut out what I see in front of me in favor of beautiful abstract weavings. Not for very long. I’m not even capable of hiding things from myself for very long, not to the extent most people are. And whether the abstract weavings take on the form of the sort of cognitive processes that suppress perception, or the sort of social niceties that obscure reality, they will fall at some point. Whether I want them to or not. It’s not voluntary. Illusions fall apart and I’m left with whatever’s in front of me.
I also lack the privilege necessary to maintain that level of pretence. If I pretended all that mattered, in the same way that many pretend it does, then I would be dead by now.
Neurology and circumstance have conspired to make me pretty unfazed by beautiful complex illusions over the long run. Not that they can’t entangle me briefly, but they fall apart rapidly. “Over the long run” I mean that sooner or later, they go away. Always.
Fortunately, there is plenty of beauty in reality, more beauty than an illusion could even vaguely replicate. But often the illusions cover up the ugly, unwanted, or inconvenient parts of reality. (And when I point out that this is happening, I am often regarded as not appreciating beauty, because I have little tolerance for pseudo-beautiful illusions.)
One often-unwanted part of reality is that no matter how you dress it up, the “Parents have an absolute right to decide what’s best for their child” viewpoint still creates enormous problems for the child. The “Every child is an individual therefore we can do any treatment we seem to think works” viewpoint still allows for many dangerous treatments for non-existent conditions, or dangerous and unreal treatments for existing conditions. All of these viewpoints tend to take a fairly individual or medical approach to autism, which in turn creates its own set of problems.
I see people doing the things that they’ve always been doing, but adding a few words here and there and claiming that now it’s okay because they’ve added these words, see, these words of respect, or something. The pretty social illusions, the shows of “respect”, the attempts to avoid open conflict while still doing the same old things… they do not change the fundamentals.