Tuesday 3 November 2015

The Politics of a "Cure"

When I was speaking at Can-Con last weekend about how autism is portrayed in fiction, I was surprised by the level of antagonism towards any implication of a "cure".  

One of the panelists, who had Aspergers, got quite upset and compared curing autism with trying to cure being gay.  Another said we shouldn't even diagnose autism since the purpose of a diagnosis is to "fix" the problem.

I disagree on both points, though I believe I can understand the underlying motivation behind them.

It would indeed be beneficial if people and society were more understanding and accepting of different ways of seeing the world.  That should be (and is) one of the goals of the autism community, to normalize how people with autism see the world so that it can be accepted as just another point of view.  However, there is a substantial difference between those who are able to function and those who aren't.

To say that those who need help in order to function in society should not be allowed to have it or even be allowed to self-identify is cruel.  It puts politics above individual welfare, saying that the appearance is more important than the reality.

To me, there is a big difference between autism and sexual orientation.  Autism has hard-wired problems such as sensory issues, difficulty functioning socially and communication challenges.  Those things will sharply limit the individual with autism from doing the things they want to do if they don't receive help with how to deal with them.  For sexual orientation, the difficulties are external, imposed by society's expectations.  In a completely accepting society, the person with severe autism will still have difficulty.

And I strongly disagree with the idea that the purpose of a diagnosis is to fix the disorder.  It is also to identify what help and accommodations a person needs and help them to find a supportive community of similar people.  

I've compared autism to a backpack of rocks, weighing my children down and making their life's journey more difficult compared to the rest of the world.  To imply that I am somehow not accepting of my children because I don't want them to be hindered by that backpack is just insulting.  Any parent, any human, should be outraged and want to help.

There are two ways to make that backpack lighter.  One is increased acceptance but the other is therapy and the hard work which comes with it.  I cannot control society's acceptance, although I can certainly try.  But I can certainly put the work in at home.

Perhaps one day my sons will look at me and rage about how I forced them to become typical.  How I pushed them beyond their natural place and view.  If that day comes, it will be hard, but it will also be a secret moment of triumph.  Because it will mean they've come far enough to no longer be weighed down by their autism.  And that would be a success.

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