as small as a world and as large as alone

11:49am July 13, 2014

madeofpatterns:

boycottautismspeaks:

#BoycottAutismSpeaks Virtual Protest! 

Image Description: A man standing in front of some green foliage. He is wearing a white t-shirt, and has his dark hair pulled back into a ponytail. 

He holds a sign with the text: 
Autism 
It’s not a disease or disorder. 
You can’t cure or treat it. 
There are no symptoms and no deficits. 
My Autism is a person and that person is me. 
To remove the Autism you have to kill me. 
I would rather live.

I actually really, really disagree with this.

I don’t want a cure. But I am disabled and I do have a disorder.

There *are* symptoms and deficits. There’s an upside, but there’s also a downside.

And I want that acknowleged.

Cosigned on that.

I don’t want a cure either, but I’m severely impaired in many different areas related to autistic traits, and that's real.  I still don’t think I’m separable from those traits, even the ones that cause me the worst trouble.  But they’re there, and they cause severe deficits in certain areas, and there’s no shame in acknowledging that.  

I actually don’t like using the word ‘symptoms’ for autistic traits, but I couldn’t explain why.  But even though I don’t like using it, I’d never try and stop anyone else from using that word if they felt like it described them.

As for deficits… I still don’t see how admitting there are deficits is bad.  Everyone has deficits, actually (and I don’t mean that in a way to minimize disability, it’s just true), and autistic people are not only no exception, we tend to have very specific, very obvious deficits in certain areas.

My visual processing completely sucks.  At its worst, I’m functionally blind.  I’ve had to go to conferences before where I’d hold one end of a scarf or belt, and someone else would hold another end, so that I could have a tactile-kinesthetic way of tracking where I was supposed to be going, because I knew visually I would just see a jumble of shapes at best and pixels at worst.

My motor planning, sensory processing, and executive function all combine in ways that basically mean I need support to do most everyday life activities.  I do get that support, fortunately.  When I didn’t have that support, I ended up starving in a filthy apartment and peeing on the floor or in the front yard as often as the toilet and it was really awful.  Like… really awful.  Because I wasn’t getting the help I needed, all of my skills got worse (because basically any support I get takes a load off my brain, and any lack of support adds to the load of stuff I have to do and therefore makes my brain more cluttered, overloaded, and shutting down).  And I spent a lot of the day totally unable to move or comprehend my surroundings.  I’d get lost in a two-room apartment, I’d become totally unaware of anything that I couldn’t immediately see with my senses, and my visual processing definitely went so far downhill that a lot of the time I couldn’t use sight at all.

And that’s not to mention the thing where language disappears entirely and I can’t even imagine that it ever existed let alone understand it.  And the whole thing about growing up with severe receptive language problems, leading to an inability to communicate adequately until I was almost an adult.  (I had the appearance of good communication, but at my very best only a fraction of what I said had any connection to my thoughts.)  And the thing where I can’t use speech to communicate even now that I’ve become able to use language more adequately.

And I want to remain autistic.  And there are autistic traits that I value beyond any other traits I have.  And I never want to get rid of those.  But those traits are tied – in a way that can’t be undone, in any possible way – to very real deficits that cause very real, severe problems.  And those things are just as much part of autism as any part that I like.  (In fact, in my case, I can usually see that the parts I like and the parts I don’t like are two sides of the same coin, there’s literally no way to separate them.)

And even though I don’t want a cure or anything?  I get really mad when people try to act like autism has no downside.  Especially because such people have, historically, been the people who make it hardest for me to get help with things, because in their quest to say that autism has no real deficits, they will tell me things like:

“You couldn’t eat even though there was food nearby?  You must have had an unconscious death wish.”

“But that’s so easy, anyone could do it.”

“Stop wallowing in self-pity.”  (Said any time I acknowledge there are things I can’t do.  I have no self-pity over such things, they’re just facts.)

“Your deficits don’t come from autism, they come from not caring enough to take care of yourself properly.”

“If you’d been left to starve and live in filth long enough, you’d have eventually caught on how to do things.  It was wrong for you to get services, they just make you lazy.”

“You’re just making things up to make people feel sorry for you.  No intelligent person could have all those problems.”

“I don’t have any sympathy for anyone who would starve with food in the house.”

It’s always the “autism has no deficits” people who say things like that to me.  It’s like they want it to be true so badly, that they’ll basically erase your entire existence in order to deny that autism can have a downside.

And I’m not even that negative about autism overall.  I like being autistic, I like certain aspects of my sensory processing a lot, even though they cause me trouble, I’m pretty tame as far as “autism has a downside” goes.  And yet even what I say gets flak from some people because it’s not 100% “autism is great and causes no problems”.

That said, there’s a lot of people who are very positive about autism and who oppose cure who’d never go as far as to say there’s no deficits involved with being autistic.  And I’m still ambivalent about 'symptoms’, just because it feels medical, and autism doesn’t feel medical to me.

But… don’t ever, ever tell me that autism can’t come with extreme deficits, because my entire life has been shaped by those deficits in huge, huge ways, literally from day one until today.

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