THE DSM V AGAIN (sorry)

A really long time ago I had talked about how I read an article about how the DSM is trying to change Asperger's, autism, and PDD into Autism Spectrum Disorders, and I had talked before about how I thought this was incredibly good and important. And I guess, now, they've sort of made it more official that they're planning on doing that, and of course some people have said things about how they don't agree, and I don't know, I find that very upsetting.

I'll explain more about what I mean, because I feel like this sounds like a very big statement to make, but I feel like some people with Asperger's, or people with Autism Spectrum Disorders who are verbal and fairly academically gifted, think that the way they're different is okay but they don't feel ready to accept the ways that other people are different.

This makes me very upset. I feel like I've certainly probably been like that at some point, like, when I was younger I didn't know a lot of people with severe disabilities, so I feel like a lot of people I probably thought that I didn't have much in common with them. But as I've gotten older I've found out that this isn't true, and that prejudice against some people with disabilities is insulting to all people with disabilities, and prejudice against some people with Autism Spectrum Disorders is insulting to everybody with an Autism Spectrum Disorder.

And, I'm very uncomfortable with the idea that I'm more like nondisabled people than I am like severely autistic people. Like, maybe if you made a diagram, and you had somebody who can't talk and isn't toilet-trained, etc., I guess you could probably figure it out mathematically so that I'm more like a nondisabled person--but I don't know, I still feel like the ways in which I'm different are important, and I still feel very connected and identified with that severely disabled person. And it's very hard for me to feel that I'm not supposed to care about that person [and feel identified with them as ASD people].

And my mom--I haven't heard it yet, 'cause I guess it was on the radio and it's not online yet. But my mom heard this interview with a woman about my age who has Asperger's, and she [the woman] said that she doesn't agree with Asperger's being considered autism, because she says that she doesn't identify with people who are severely disabled--and, um, apparently, she said people who are mentally disabled

--which, I think, I've probably gone over how this doesn't make sense, and how if someone's severely autistic, you can't actually tell if they're mentally disabled, and some people with severe autism have been shown to have normal intelligence or even be brilliant, and that's just a fallacy, it's not true.

But anyway, I guess this girl had said that she thought it was a problem with services because if everyone was called autistic, then she doesn't know what she'll do because the services that she needs aren't the services that a severely autistic person needs. Well I feel like this is just a strawman and it doesn't make any sense. Because I mean, for example, a person could have a diagnosis of an intellectual disability, and this could mean that when they get a job they need some extra help with their job and they need some extra help with their tax forms and stuff. Or it could mean that they can't talk at all and they live in a group home and they need people to help them with quite a lot of things all the time. And these people have the same diagnosis. [Actually I guess this isn’t accurate--one would have a diagnosis of Profound/Severe and one would have a diagnosis of Mild or Borderline. But this is also going to be the case for ASD, I think, so whatever.]

And another example is cerebral palsy, which is a physical disability involving muscle weakness and poor muscle control. So, for some people this could mean that they use a wheelchair, and they can't really talk, so they have to use a machine or a computer to talk, and some people don't even have enough muscle control to do that. So, those people definitely need a lot of services from the government, because they need an aide to help them get around, and they need communication devices, and they need a wheelchair. But there are also maybe people who have some trouble walking, but they can walk, and they talk in a different way, but they can still talk. And those people obviously don't need as many services, or they need different kinds of services.

So, I don't think the fact that all these people are called people with cerebral palsy, or that all the intellectually disabled people are called intellectually disabled people...I don't think that means that they all have to get the same services. I mean, that's kind of ridiculous. I feel like, to the extent that that's true, that everyone with one disability is expected to be the same, and you're expected to be judged by the word that your disability is--you're not able to be like "I have trouble with self-care skills" or "I need help moving around" or something like that--that isn't an acceptable way for services to work. And I don’t get services so I’m not an expert, but I don’t think that’s the way services do work.

So, I guess I don't understand how me being called "autistic" means that I'm somehow going to end up with all the services that a severely autistic person would have. I've also been accused of, people like me, who are "high-functioning," trying to take away the services from "low-functioning" people which also isn't true--I have no desire to take all the services that a severely disabled person needs, and have them end up with my services, which at this point are not any services. That just doesn't make any sense, and I feel like this person doesn't know what she's talking about, about services.

And I also feel like it's a little, maybe, even, dishonest, for people to pretend that it's about services. Because I really feel, sometimes, that people--like me, when I was younger, and like many other people--don't know a lot of people with severe disabilities, and feel very uncomfortable about it, and think that those people can't be anything like them, but that's just not true.

I read some interview with some guy, who, while he ultimately came out supporting Asperger's being enfolded into the autism diagnosis, he said that it's hard to think of yourself as being like people who have to wear a helmet and use adult diapers. And I don't know, I think that's funny because even some people who don't have autism have to use diapers, because all kinds of people have those problems, especially when they're older and stuff, or if they're in a car accident...I guess I think it's funny that he thinks that only happens to severely autistic people.

But anyway, I just think it's really funny that someone is upset by the idea that they might even be associated with someone who God forbid uses diapers. If you ever actually met anyone who has those kinds of disabilities, it's pretty much like meeting any other person, if you can believe it, it's not like that's the only thing there when you look at them. And I don't know, that just makes me feel upset.

On a different (but not extremely different) subject, I get really upset by the word retarded, when it's used as an insult. And I feel like when I try to say that it upsets me, I get this attitude like I'm being really politically correct, and I think people imagine that I'm trying to defend this imaginary group of like, "retarded people," all these disabled people who are, like, too disabled to understand what's going on, and that I'm trying to be charitable. Well, that's not the case. Retarded people, who have a diagnosis of mental retardation...some of these people that I care about and think are really cool and like to be around as much as I like to be around anyone else, and, I'm definitely not being charitable--I'm defending, basically, my friends, or my fellow disabled people.

I mean, I've been called "retarded” as an insult. I think a lot of people with Autism Spectrum Disorders have been. And, there are certain people who will go around...well, I feel like Asperger's has gotten to this point in our culture where we're kind of being thought of as, like, these exotic zoo animals, because we have, like, splinter skills and special talents, and a big effort is being made to distinguish us from either severely autistic people, or retarded people, or sometimes they're just considered to be one big group of people, which doesn't really make sense.

But this makes me very uncomfortable. I don't think my value is in my supposed splinter skills, if I even have such a thing. And I've been called retarded, and I think I have some of the same problems that some intellectually disabled people have. I definitely have some of the same problems that some severely disabled autistic people, who are mistaken for intellectually disabled, have. So, I mean...yeah, to some extent, when people use the word retarded, I even feel like they're insulting me, so I'm not being charitable. I'm defending myself.

And, um, I don't want to separate myself from other disabled people because it isn't fair. It has to go farther than that. I can't just be thinking about myself. I have to be thinking about all the other people who are in this with me.