10 February, 2010

Autism Spectrum Disorders in the DSM V Part 2 Transcript

Um, a really long time ago I had talked about how I read an article about how the diagnostic...something...the DSM...I actually realized I have no idea what that stands for, which is kind of bad. [For the record, I know what the DSM is and all, I just forget what it stands for.]

Yeah, so they're trying to change Asperger's, and 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, um, I don't know, I find that very upsetting.

So, um, I guess--and I mean, 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, um, 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.

And, um, 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, I feel like, maybe if you made, like, a diagram, and you had, like, 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--I still feel very connected and identified with that severely disabled person. And, um, it's very hard for me to feel that I'm not supposed to care about that person.

And, um, my mom--I haven't heard it yet, 'cause I guess it was on the radio and it's not online yet. But it was a woman about my age who has Asperger's, and she 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, um, I guess this girl had said that she thought it was a problem with services because if everyone was called autistic, then, um, 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, this, I guess, I feel like it's 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.

And another example is, like, cerebral palsy, which is when you don't get enough air when you're in the womb, and it leads to having, like, a physical disability with, like, trouble controlling your muscles and muscle weakness and stuff. So, for some people this could mean that they use a wheelchair, and they can't really talk, so they have to use like 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, they can still talk. And those people obviously don't need as many services, or they need different kinds of services.

So, um, 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--what you need is supposed to be judged by, like, 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 really the case, and to the extent that that is the case, it shouldn't be the case.

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. Or, um, 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--like, 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. Like, that just doesn't make any sense, and I feel like this person doesn't know what she's talking about.

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

But, um, just the same, 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, um, I don't know, that just makes me feel upset

I feel like, um...Okay. 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, um, I'm definitely not being charitable--I'm defending, basically, my friends, or my fellow disabled people. And also, I think--

I mean, I've been called "retarded." I think a lot of people with Autism Spectrum Disorders have been called "retarded." And, um, there are certain people who will go around...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, um, 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, um, I've been called retarded, 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 also called "retarded," 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.

(I guess maybe I do these in case a person who can't hear or doesn't like noises would be interested, but I also am just interested in figuring out how I speak, which is a lot of why I started making YouTube videos in the first place. I think it's interesting that as I've recently started trying to advocate for myself a lot more, I've started using the phrases "It upsets me" and "It makes me feel uncomfortable" almost compulsively. It's really cool to be able to say those words, I hope someday all of us learn how to say them.)


  1. (So many ummm's in your post lol.. I do have a response! I just thought I'd say you like the word umm a lot..)

    I know a lot of people are either extremely happy over this new change in the DSM V or whatever, and then there are others who are extremely unhappy over this new change. I know a few who are scared because they do not understand the changes and are worried about losing their diagnosis.

    I do believe that there may be a few people who will not fit the new criteria for ASD's (but I also wonder if they should have been diagnosed with an ASD in the first place...cause I still fit the criteria very well.. though I do fear that I won't even though .. I really do..fit..anyway.)

    However, there are those with Asperger's Syndrome who think they are all high and mighty because they have the "Smart" autism, which isn't the case at all.. and most people with AS are actually average IQ .. and the rare person will have a above average IQ, some even have below the 70 IQ level range or whatever. They don't want to be associated with "those other Autistics," who are considered 'severely autistic' or 'severely disabled' and that is very wrong and discriminatory. Though I'll be honest, I don't want to be lumped with those people either, I don't need those who are in the same area as I am making me feel bad because I am not a genius and have more social issues and four different LDs.

    I'm glad you are advocating for yourself, and that you are using those phrases. (I use them every now and then, but sometimes incorrectly apparently.. eh.) I have actually a good speech pattern apparently, but I have been in drama for awhile so that has helped.. but the problem with an acting class is if I am given a script .. I erm.. I have no inflection until someone reads it to me and tells me where I need to change my voice.

  2. Great post. I feel the same way. I will be advocating for my son to get an ASD diagnosis even if it isn't officially recognized yet. The DSM V change was mentioned on my local news today and they wanted people to comment on how they felt about it. They also showed a mother saying that if there was a cure for autism she would want to "cure" her child. I thought the whole segment was depressing and I chose not to comment about the change on their website because I didn't want to expose myself to negative and ignorant comments.

  3. Just a reminder:

    Diagnostic and Statistical Manual [of Mental Disorders], [version].

    Those are great words to say: "It upsets me", and "it makes me feel uncomfortable".

    (Even if the feelings aren't great to feel!)

    Because these are body or gut feelings as well as intellectual ones, in a way that "I feel sad" or "I feel angry" may not always be.

    I hope you're just as out there about things which make you feel happy.

  4. hi Jelly, I know I say um a lot, but I feel like it's important for me to be accurate about the way I speak, I'm not sure if that makes sense. like most ASD people online I've been accused of being too articulate to have any problems, or whatever. I know I don't have major communication problems, but speaking is a little difficult for me sometimes and can be hard for other people to understand. I guess I feel the need to make that visible, or something. have you seen the video of Kassiane Sibley talking to a lot of non-ASD people at an autism conference--I just think it's really cool, and really important, because she communicates in a somewhat nonstandard way and I think it's important for that to be visible, ASD people shouldn't have to hide our communication differences or difficulties in order to advocate for ourselves. I mean, if we did, that's kind of missing the point.

    those AS people suck, at your school. some girl in my disability studies class was talking about how "the DSM took Asperger's out, they took away this word that people with Asperger's were claiming for themselves...I'm really interested in Asperger's, it's been a part of my life for years." it was really super annoying, I wanted to be like, "it's been a part of my life for 21 years, so, I win, and I don't think hierarchies/ableism within the disability community is something that needs to be respected, no matter what the New York Times says."

  5. I liked this blog post. Well said. :)

  6. Yes, this is very much how I feel, as well.

  7. Pretty much my feelings on the subject too. When I read the NPR article with the helmet and adult diaper crack, I cringed.
    What I find funny about those people, the same ones who justify the existence of high functioning aspies by mentioning Einstein, is that Einstein was opposed to all social privilege (which is what motivated him regarding relativity) so he would not like the idea of splinter-skill aspies being crowned more worthy than those of us who may be lower functioning or not exactly genius-types.

  8. Einstein also can't be called an Aspie because he had speech delay. So it's funny for two reasons.

  9. Here's the thing: I had Asperger's before it appeared in the DSM. It's the same then as it is now, but now it has a name and some half-assed attempts at treatment. Whatever you call what it is that makes me me, it's still the same thing.
    The only thing I won't like if AS does get folded in is that that asshole Jenny McCarthy will be spreading her ignorant, poisonous idiocy in my name too.