as small as a world and as large as alone, mulder-are-you-suggesting: ...

2:57am September 7, 2014

neuroatypicalfeminist:

*anti-ableism advocate with [insert mental condition], yelling* “It’s not a disease!!!!”

???

Are you gonna do anything about the ableist stigma against people who actually do have diseases?

I have more than one disease, and I’ve often had kind of a knee-jerk response to people making a big deal out of how autism isn’t a disease. Autism *isn’t* a disease, and I think it’s perfectly fine to point that out, but the way some people do it has this undertone of “how *dare* you suggest I’m one of those icky gross people who have icky gross diseases!” It makes me feel so uncomfortable.

It makes me uncomfortable too.

I mean I don’t mind people saying autism isn’t a disease, because it’s important that people realize it’s not a disease and that you can’t treat it like one. And treating it like one causes actual problems to autistic people, including autistic people dying because of it.

At the same time, a lot of autistic people say “Autism isn’t a disease” and they don’t mean what I mean by it. They mean “Autism isn’t one of those icky things other people have that we don’t.” And that makes me highly uncomfortable as a multiply disabled autistic person with a whole host of diseases, many life-threatening and seriously unpleasant.

Also, it’s quite common for autism to be the result of a genetic disease that causes other diseases. At one point they did a study… I think back around 2004? They looked at autistic people and looked for easily-screened-for genetic diseases, not even the ones that are hard to find. And they found that something like 40% of autistic people had them. And I think that estimate was conservative.

Autistic people who are autistic from genetic diseases get excluded from a lot of autism research. They call it ‘secondary autism’ rather than 'primary autism’ and they don’t see us as 'pure’ enough autistic people to get real data from. This, obviously, bothers me a lot, as an autistic person with genetic diseases (which may or may not be linked to the autism, but they’d still call it secondary autism for the purposes of research). I want people like me to be part of what gets studied as autism. I don’t want the presence of genetic diseases to sway them in favor of avoiding data on people like me. I think people like me are complex and fascinating and ought to have a place at the research table. I think you can find out a lot.

Down syndrome comes with an increased rate of autism. In fact the first 'severely autistic’ boy I ever met had both autism and Down syndrome. The idiots taking care of him kept saying he wasn’t autistic because he was social. The kid spent all day rocking and making a single sound over and over. His only social interaction was to grab you by the hand and walk you back and forth. He tapped his face a lot. He couldn’t sleep at night and they’d tie him down to keep him from walking around. He always tried to hide in my room. My room. No one else’s. It takes one to know one. I still remember the pleading in his eyes, for me to save him from staff about to tie him down. I couldn’t.

He would have been 'secondary autistic’ too.

Just like me.

I was, unbeknownst to myself, being diagnosed with autism at the same time as I met this kid. I would not, at the time, have found any commonality between us. Other than the bizarre fact that he always picked me first, he always approached me, he always tried to find me, in private, when nobody was around.

Another girl was given a lot of praise for being “good with him”. This was code word for learning to behave in a staffish manner. He liked her, but he did not seek her out when the going got tough. He sought me out.

This is a typical pattern for autistic children. They seek out autistic adolescents or adults because they recognize someone “like them”. Typically, neurotypicals around them can’t explain why they seek out who they seek out, can’t see the autism in the older person, and often get annoyed or aggravated by the whole thing or consider it bad or misbehaving or unhealthy and try to squash it before it begins to get 'out of hand’. (They don’t like inmates/classmates forming friendships, it undermines their authority.)

If you are an autistic adult and you go to a classroom of autistic children, and you don’t expect anything, you don’t go in expecting this, that’s very important. Then often, one child will approach you. Sie may follow you around. Sie may imitate your movements. Sie may stare, and stare, and stare at you or your adaptive equipment. Sie may try to hold your hand, or touch you, or touch your adaptive equipment. It may be a good idea to make an exception and allow hir to do this.

I know this is a long way off from the original topic. Yay for thread drift

tl;dr: Autistic people with diseases are interesting. We shouldn’t be treated badly by each other. We shouldn’t be considered second-rate research subjects. I understand, I understand, it’s hard to get a look at 'pure’ autism when there are all these other diseases in the way. But I also know they’re studying a minority of autistic people, because most autistic people have diseases, genetic and otherwise.

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