Autism does not reside in a medical report.

December 12, 2016 § 9 Comments

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Uncertain Weather System in Place (detail) © Sonia Boué 2016

@ Sonia Boué 2016

Angry voices snarl my Twitter timeline.

As usual it is one particular blog post and one particular individual causing the ruckus. Then others catch the bait, and on it goes.

Currently the official vs self diagnosis argument rages – triggering a daggers drawn stand off. It’s genuinely upsetting and frustrating for my fellow autistics. Horrible and unjust for self diagnosed people to be targeted and excluded by an ‘official’ autistic person. I’m staggered really that anyone would do this.

Of course respectful places exist where it is clearly recognised that self diagnosis can often be the only way for people to identify as autistic when medical model options are inaccessible. Official diagnosis in this sense is a privilege, especially as it can cost a LOT of money. I support self diagnosis, and as a formerly self diagnosed person I see it as a necessary arrival and/or staging post. Reaching self diagnosis for many is a prolonged and complex process. Whether official medical diagnosis follows can be a genuine matter of luck and/or finance.

I respect and understand people who don’t trust the medical system to validate their experience as autistics. For women especially, a failure in diagnosis can be devastating. We fall under the radar too often. While ignorance persists this remains a danger.

In whichever order and by whatever means we gain self knowledge and identify as autistic there is one clear fact. Autism is a life long neurological variation on the genome present from birth. In this sense (with the proviso that there are as many expressions of autism as people) we are all the same.

But I want to understand what makes one person reject a cohort of autistics (while admitting that self-diagnosed people can be autistic) as not the same.

Many will be familiar with the arguments – yes, the worry about fake autistics does feature in a big way.  To be honest I ran out of steam and the words dissolved two thirds of the way through. The author was not able to hold my attention fully after a certain point. Sorry about that – I did try.

You will always get fakers and trolls. Self-diagnosis is not to blame for this and this ‘benefits cheats’ argument is frankly as thin as the hairs on my head. A tiny minority of people may abuse the opportunity to self-diagnose, but guess what? You can fake an ‘official’ diagnosis too.

I don’t believe that fake autistics are dominating the conversation or that neurotypicals are queuing up to become “special snowflakes” – how dismissive and hurtful to the self-diagnosed individuals who have made it to adulthood to look back on a whole life spent in complete bewilderment. The author has encountered views they don’t agree with among autistic people, and that’s called diversity.

I also submit that late diagnosed and self diagnosed autistics understand very well the following concerns (though we may not have lived them directly)

“We need to talk about how the employment rate for autistic people is devastatingly low.
We need to talk about how the law still arbitrary restricts the freedom of autistic adults.
We need to talk about how it is still legal for some employers, such as the Armed Forces, to discriminate against those with formal diagnoses.”

Some people like to stir controversy and we should think probably think carefully about giving them the attention they crave.

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Autism does not reside in a medical report  – and this is the point.

I get that the author of these words grew up in very different circumstances to my own. That is obvious from a simple biographical comparison. I was never at risk of institutionalisation or knew my difference it’s true, and on this point I hear them. But I was as autistic then as I am now. And last time I checked this was not a competition – and why would it be. In addition second guessing other people’s childhoods is futile and disrespectful.

There are many ways to raise this question of difference within difference, and I truly wish they had chosen a more constructive one rather than baiting already beleaguered souls.  But we know that territorial squabbles are rarely kind and often bloody.

They also tend to be a bit of a dead end. Over and out.

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