(kind of worry that this post is developing an Oppression Olympics tone, which is so not my intent, to say that one group of disabled people has it worse than another group--I'm just trying to articulate what I'm feeling and why it's different from what people with other disabilities might feel.)
This is hard. I identify as disabled, or Autistic. Or developmentally disabled, person with autism, , or a headcrip (thanks Samantha). Also sometimes a bad brains, but let's stick to what I'm saying in a better mood. Or let's stick to what I say when I'm trying to be objective, which is: autism. ASD.
Something that's really hard about identifying as disabled and having autism, that I don't think is an aspect of being blind or having cerebral palsy or being deaf, is the feeling that the base of your identity is subjective or could be taken away at any time. Like--identity comes in two parts, the objective fact and the actual identity. You're deaf or hard-of-hearing and then you're also Deaf. Or you have a physical disability and then disabled or PWD or crip can become one of the important things about you.
Anyone can argue with the idea of disability identity or indeed any kind of identity, but generally they can't argue that someone who has cerebral palsy and identifies as a "crip" doesn't have cerebral palsy. They can argue with the word crip and the idea behind it, but they can't deny the CP; or if they do because it's not that obvious from the person's physicality, I can't imagine it can shake you up as much. Because...if you have CP, you know you have it.
Whereas the idea of autism is this incredibly odd thing that almost no one can live down to in real life. I always hear (and read) doctors saying things like, "this kid had an autism diagnosis but he hugs his family," and instead of the response being, maybe I had the wrong idea about autism, it's always, "so many kids are misdiagnosed with autism!" (and this is not a new thing, I read it in a book that's 15 years old). And, technically, they have the authority to say that, and so many of them do, so it's like, you objectively have autism only as long as a particular doctor said it, but you're just waiting until the next minute when another doctor will say you don't. Because all these things--not necessarily accomplishments but feelings, qualities, where your eyes go--will mean that to some person or other.
The doctor I went to recently to get learning tests didn't have particular experience with autism, and I didn't think that would be a big issue for me. I did want a rediagnosis of PDD-NOS, which I was able to badger him into, but I mainly just cared about knowing what my learning and thinking problems are and I didn't really care if he called it ASD or NVLD or ADHD.
But, you know, he called it the last two, and it made the process of talking to him really strange. We talked a lot about personal stuff before the testing started, and obviously I mention I have autism when I talk about myself; it's part of my life, and sometimes I say, "I also think this might be going on, because I talked to some of my friends who also have autism, and they have also experienced this..." The doctor, while very nice and very good at thinking about learning disabilities, obviously didn't know anything about autism--I'm not being a bitch, it was just clear that it wasn't his field. So there would be this little record-scratching sound whenever I said the word.
"You keep saying you have autism. Who told you that?"
"Oh, this isn't about autism..."
"Autism? I thought we decided to throw that out."
Like, I was seriously at a point of wanting to be like, "Whenever I say I have autism, just pretend I'm saying I'm Catholic or I have arthritis or I have dual citizenship or I'm a twin. It's not up for debate, it's part of my life."*
It just is really weird to have the base of one of your identities be something that everyone always thinks they can argue the legitimacy of. The untoward lady helped me about this a little bit by saying that maybe the most objective way to define autism is by whether people who identify as having it recognize it in each other. And I guess we are the people who have thought about it the most and lived with it the longest. But we can still never prove it even if we know it ourselves, and that's something that makes us different from most other people who identify with disability culture, I think.
*these things=actually not true