Saturday, 23 August 2014

That Autism 'Suffering' - Part One

A while back, a friend of mine was sent an email by an autism parent, angrily reproaching him for trying to stop autism parents doing certain treatments on their autistic kids. He claimed, as many such parents do, that he and others were simply trying to "stop their pain and suffering".

This idea of autistics ‘suffering’ is something that bugs me. I feel it needs more attention. It's a big issue, I've realised, so I'm going to split it into three parts.

In this part, I ask what is it that parents (and all the autism 'experts' and autism industry that caters to them) are seeing, when they say their child is ‘suffering’? (And please note here, I am NOT talking about those who use various therapies in service of what I call the 'maximisation' approach, but rather those who form what is not-so-fondly known as the 'curebie' brigade, who take the opposite or 'normalisation' approach.)

Firstly, there seems to be an assumption on the part of these parents (and others) that simply being autistic means an individual is ‘suffering’. Sometimes they appear to think this is so through having observed some aspect of their child's behaviour, e.g. frequent crying, meltdowns, or the child's frustration when they can't communicate. So they think, "well, this is caused by my child's autism, therefore if I can get rid of the autism, I will relieve their suffering." That autism is fixed at the genetic and neurological level either isn't understood or isn't accepted, nor do they seem to consider that there might be specific, removable causes for that behaviour, i.e. some other (and easier) way to alleviate their child's difficulties that doesn't involve attempting to remove their autism wholesale. They 'have' to eliminate the autism, they believe, and so anything and everything that might achieve this is okay. Some of what they do is patently useless (hyperbaric chambers? worms? really?), other stuff alleviates some distress in some cases, e.g. gluten free diets (though only, it seems to me, where there are definite physical signs of ill-health), but don't rid us of our autism, per se. Yet other treatments, such as bleach enemas, are exponentially more harmful. Parents who take this approach often seem to feel either that a 'temporary' suffering is necessary to a long-term 'solution', or - more drastically, in some cases - that they'd rather see their kid dead than autistic.

More often, however, the underlying thinking seems to run like this - "If I was autistic, I'd be miserable. Therefore, they must be too, and I have to do everything possible to eliminate the autism, so they can be happy." The parent thinks, for instance, that a child who spends a lot of time alone must be miserable, because they would be, if they had to be alone that much. That we might have different needs, that we might not only be perfectly happy alone, but in fact need large chunks of solitude in order to 'recharge' our emotional /social/ physical batteries, so we can go out into the world again, never seems to occur to them. Or if it does, they take that somehow as further 'proof' of what's 'wrong' with autism.

These above beliefs, in turn, combine with another belief - or simply an assumption -namely that autism itself is a bad state. It's 'abnormal', and therefore 'of course' those with it 'must' want to be relieved of it. Because being 'normal', i.e. NT, is not merely superior, but the only 'right' way to be, and only 'normal' people can be happy. Right?


And yes - before anyone points it out - I do accept that many of these parents are simply ill-informed, tragically caught up in the whole 'defeat autism' thing, and are genuinely just trying to do the best they can for their child. I know this. Nor am I denying that being autistic often means experiencing pain, frequently, and rather a lot of it. I wrote a post  here on just that recently. However, I believe that our pain is not through being autistic per se (i.e. the different way we think, feel and react to the world, which forms the core of our autism 1), but through difficulties that arise out of that different perception, or 'co-morbids' associated with autism, and/or - most especially - other people's reactions to our autism. Yes, it can be difficult to separate out all these things, but I'd like to try, so as to tease out the real causes of our 'suffering'. They seem to fall into two main groups, and in the next two parts, I will examine those.

1 It has been said (though I can't remember by who) that left alone in a room, our autism 'disappears'. That is, we're okay until we have to interact with the world. It's then the pain and suffering starts.

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