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?
Wrong.
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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