10:52am August 31, 2012

YOU CAN’T DIAGNOSE YOURSELF WITH AUTISM.

yesthattoo:

raprockloser:

STOP. IF YOU THINK YOU’RE AUTISTIC- YOU’RE NOT. WHY THE HELL WOULD YOU WANT TO MAKE SUCH A DEBILITATING DISORDER PART OF YOUR IDENTITY?

Do you know how hard it is to live with autism? Not just to have it, but even to live with or know somebody affected by it? It’s the most disheartening thing in the world; it’s absolutely horrible. There is nothing wrong with having autism; it’s areal developmental disorder. There is, however, something wrong with wanting to be autistic. Do you understand how hard life is for people with autism? The lengths they have to go to in order to do things you and I take for granted? The pain they feel? The pain their families feel; the anger? Why would you EVER want something like that? Why? It makes no sense.

Um, yeah. That is what charities like Autism $peaks want you to think autism is. Now go read everything Amy Sequenzia ever wrote, because she’s pretty much the person you think autism looks like, except for the part where she’s happy and doesn’t consider herself a tragedy. Oh, and read about all the crud that’s wrong with the profession right now (yes, people really have been told that they can not possibly be autistic because they do not have a penis, and yes, IB1 is the only thing from IB that most people will actually count.) Now understand that autism is a huge spectrum ranging from in-your-face disability to people you think are “just weird” and everything in between. Finally, realize that yes, self-diagnosis can be valid sometimes. Because autistic is a descriptor for a way that the brain is wired, not for how tragic and burdensome a life is.

And yes, I am professionally diagnosed. Shut up.

This again?

Ok, OP, it’s like this:

I’m tired of sucking at things that most people can do easily and not knowing why. I’m tired of trying to fake normal. I want to start accepting my limitations and working with them rather than against them. I want to lead a good life, with the brain mind and body I actually have.

Because, you see? These things you take for granted? Aren’t actually easy for me. And trying to ignore that has caused serious problems for me.

You know what you don’t understand? What it’s like to be told constantly, that real people aren’t like you. When the phrase you hear most often is “people don’t x!”. When every description of a person you ever see differs from you in fundamental ways. And when you’re confused and people tell you horrible things about yourself, and you believe they are true.

And then you meet some people like you, and you find out that there is a word for how you are, and that you’re not alone, and that there are ways of coping that no one around you ever understood or explained before. And you find out that it’s possible to have a good life as a self-respecting autistic person.

And then people come and tell you you’re bad and wrong for using the word that describes how you function, because if it applied, you’d be miserable and broken and not able to understand anything, and tell you that autism is the worst thing in the world and that you’re appropriating people’s pain and don’t understand that it’s a serious disability. And that real autistic people live in constant pain, and people who know real autistic people are angry and miserable all the time.

And actually, I’ve lived with and been close to other autistic people (who were professionally diagnosed), and it made my life dramatically better. It wasn’t the most disheartening thing in the world. It was one of the most liberating and affirming things I’ve ever experienced. Because I was with people who understood, and — because they were good people and I liked them very much.

It’s actually possible to love and value autistic people. It’s possible to be close to an autistic person without being miserable and angry all the time. People who claim otherwise are dangerous.

Also the OP does one thing that I find really dishonest and manipulative. They refer to deciding you’re autistic as “wanting to have autism” rather than “realizing you have autism”. This biases readers because the idea of wanting to be disabled is highly stigmatized.

Never mind that many people who were diagnosed by doctors want to be autistic, or whatever other condition they have. That itself is fairly stigmatized too. But not as stigmatized as someone presumed nonautistic (because we all know that every time an autistic person is born, no matter their circumstances, a highly qualified doctor magically appears three years later to diagnose them, therefore all undiagnosed autistic people aren’t autistic until and unless a doctor notices, which won’t of course happen, because they’re not autistic) who “wants to be autistic”. So if you want to discredit self-diagnosed people, say they want to be autistic, and you can evoke all these stereotypes in people’s heads. Still manipulative as hell.

Oh and guess what? I was diagnosed by at least three different doctors. I was never self-diagnosed. Many people who just see me without any further context have a habit of assuming that nobody exists in my head. Some people who see me even with further context, like me typing coherently and quickly, still refuse to believe I’m typing and think my computer is somehow playing an elaborate trick on them when it speaks my responses. I was in the hospital a few years ago and saw one person who worked there showing another my chart and saying to disregard my chronological age because I had the mind of an infant. I need help with just about everything throughout the day, and I can’t work. There are times that I really can’t think very complex thoughts and mostly experience patterns of sensory input, and times when even that shuts off and I’m still aware of something, but I don’t know what.

And I not only don’t mind being autistic. (Not that there aren’t bad parts. I just don’t want to become nonautistic.) Not only am I happy with my life, and would be even if I didn’t have what I have now in terms of abilities. But I don’t mind that people self-diagnose. It doesn’t harm me in the slightest. So please stop using the same stereotypes people are always using on me, to hurt people who discover they’re autistic before a doctor discovers it.

While I don’t agree with the direction of his research (putting it mildly), I completely agree with Simon Baron-Cohen when he says that the vast majority of autistic people who self-diagnose are correct. And frankly even if they’re not, they’re hurting less people than you hurt when you try to spread rumors discrediting them.

Also, many self-diagnosed autistic people do not even slightly fit the HFA stereotype. One woman I know who self diagnosed had been misdiagnosed with a severe intellectual disability throughout her childhood. When very young she often lacked conscious thought at all. The only way she got an education was through a mixup when she was paralyzed head to toe from a medication reaction in mid childhood. The hospital sent in a tutor who of course didn’t see any of her odd behavior because she couldn’t move, and proceeded to teach her at her actual age level by reading out loud to her. She had already taught herself how to read (hyperlexia is common for autistic people), but nobody knew and thought she was just playing with the paper.

In adolescence she surprised everyone by learning to write. Later on she learned to speak but not very well. She continued to have severe perceptual and cognitive issues associated with autism, despite her talents in a few areas. Her written grammar is still not typical. She was raped in an institution and gave birth to a girl with severe Rett’s. She kept her (they sent CPS out a lot but her daughter was always well cared for so they couldn’t do anything to them, to their frustration) and raised her. She had a lot of support from her family.

She later figured out she was autistic. I believe she was eventually officially diagnosed. She had to deal with some stupid diagnostician thinking she must have Asperger’s because some of them think if you’re an undiagnosed adult and have any speech then you have AS. Even though severe self care delays, childhood diagnosis of severe intellectual disability, and a speech delay until she was well into her teens would all each individually make an AS diagnosis impossible. She was also tested for the Rett’s gene and tested positive for the MECP2 mutation, explaining where her daughter got it. So she also probably had a milder version of Rett’s.

I’ve met both her and her daughter. They are both wonderful people. And her autism is extremely obvious in person, just as it is on the Internet from her unusual grammar and trouble understanding certain things. It’s also obvious to me because our body language is mutually compatible enough that we never had to speak/type in person to convey basic meaning. (She greeted me by walking around my table while spinning/dancing around the room without ever looking directly at me, I acknowledged her without even trying because the pattern of my rocking changed slightly when I noticed her. Nonautistic people surrounding us picked up none of it because they tend not to see this kind of thing as body language at all.)

So not all self-diagnosed people even meet your stereotype by a long shot. And I know that at times, and possibly all the time (I have never asked, not important to me) she very much does not want autism. So there goes that stereotype as well.

And there are tons of people out there just like her. Who have very visible forms of autism but one way or another weren’t diagnosed with it as children. And when you are past childhood, looking autistic is more likely to get you diagnosed as mentally ill than autistic. Some of them were diagnosed with something like intellectual disability or childhood schizophrenia as children, some through various situations too many possibilities to describe, weren’t diagnosed with anything. Some even self diagnose as adults only to find out they were diagnosed at a very young age and their parents actively hid it from them. And some (as is more common than you’d think) looked far less obvious as children than as adults and may even have slowly or quickly lost skills they had in childhood. (Which can get misdiagnosed as all kinds of things, but is more common than most people are aware of.)

So basically, just about everything believed by those who oppose self diagnosis is as completely wrong as you could possibly get.

Notes: