04 November, 2009

Kinds of Autism

So, it has been proposed that in the DSM V, they might just have degrees of Autism Spectrum Disorder--if this happened, Asperger's, PDD-NOS, and classic autism would no longer be separate diagnoses. I made a YouTube video about this where I was basically peeing myself with excitement, because I think all those labels are really reductive and basically ignore the existence of people who gain or lose skills with time, or come off as really normal but can't manage their lives at all, or are really affectionate but don't use words (actually, so many of the severely autistic kids I've met have been really sweet and affectionate, and it's just like, hi professionals, you have no idea what you're talking about). I prefer to call myself ASD anyway, both because I have two diagnoses, and because I don't think I have a different condition from people with severe autism.

But I do feel different from some ASD people. And it would be stupid for me to claim that I am just like the curebie poster kids; I care a lot about those kids and in some ways when they are hurt it is a personal thing, but the truth is, right now, at least, I talk, and I go to school, and I buy my own groceries and I don't seriously hurt myself and I don't stim in front of other people. I wouldn't call the way I am Asperger's, because except for talking, none of those things are things that all Asperger's people do.

I think that different ASD people have different levels of independence, passing ability, and communication. I think I can say, confidently, that the kinds of autistic people are:

.5. People who are perceived as normal, nice, sane, intelligent, not going through a personal crisis, and not on drugs.

1. People who look normal--not necessarily really normal, but normal enough that they can walk down the street without having someone freak out that they're being left unattended. People who can talk--not necessarily so well that people don't think they're on drugs, or being rude, but well enough that they are not immediately pegged as someone who should not be alone.

2. People who are usually immediately pegged as having some kind of disability, and may require support staff, but have some way of expressing themselves really well. They may not speak, but they are recognized as intelligent by the people in their lives, and they can make decisions about how they want to live (if other people are willing to accept those decisions).

2.5. People who cannot communicate that well. If they use words, it might not be in ways that other people can understand. They might have learned to use either speaking or augmented communication to express things like being hungry or being tired. And of course they can still relate to other people in various nonstandard ways, like cuddling, and stimming, and making noises and repeating words that other people say.

3. People who don't communicate in a recognizable way. It is hard to tell why they do any of the things they do, and obviously, if they were able to tell us why, they wouldn't be 3 anymore.

I should mention, most of the people I've met who were classified as severely autistic were 2.5. I've met very few people who were 3. I've met absolutely no 3 people who seemed to me to be receiving adequate education that fit their needs; I'm not sure that anyone is doomed to 3-ness if their family can get them the right services.

And I should also mention, if I didn't already make it obvious, that many people, maybe even most people, are not one number for their whole life.


  1. Hello. I hope they make it one diagnosis, too. I really think it is one condition, but with various degrees of being.

  2. This is great news for me and my son because we have not been diagnosed yet. I will be taking that article you linked with me and be aggressive about getting an ASD diagnosis as opposed to Aspergers. Everything I have read and learned about the autistic spectrum so far would have been exponentially simpler if there weren't so many different labels for esentially the same thing.

    p.s. I don't think your blog is stupid, I think you're an amazing writer. I thought for some reason that you were deleting my comments and I probably over reacted. Don't hate me.

  3. I have no idea if that would work now though. I mean, I think ASD doesn't exist as a diagnosis yet. maybe you guys will end up with PDD-NOS though which might help your son service-wise. I don't really know what he's like though so maybe not. did he have a speech delay?

    ha okay, sorry for having a big emo reaction. I actually deleted the post that was called "I'm going to keep fucking around with this" because I thought you un-followed me because you thought I swear too much, or something. :)

  4. I suppose if he did get diagnosed with Aspergers it would get changed when ASD becomes a diagnosis. The people I had my first meeting with had no clue what Aspergers even was. My son is one of those kids who had language early, he uses big words and has a very high reading level but he is not conversational with his language. The school experts said he was just a genius and he couldn't possibly be autistic. I was like, what about the severe anxiety/panic attacks, the hand stimming, the staring, non participating, not talking when expected to, not completing his math tests, and extreme avoidance to hand writing? They were like, ok we'll look into it.

    I think we are both self sabatogers. Un-delete your post, I do not think you swear too much. :)

  5. Amanda, if your post has swearing in it, I want to read it. :)

    FYI, my formal diagnosis is Autistic Disorder. My son is diagnosed high functioning autism. I think my doc is ahead of times, because she said it's obvious the label would be high-functioning, so there was no need to spell it out. But, then again, that's all relative and depends on the person. I would not say my son is high functioning, though he carries that label. It is best to go to an autism specialist--not a psychologist/psychiatrist. One of my diagnoses came from an autism specialist, the other from a neuro-psychiatrist, so I have two independent diagnoses which have proved beneficial to getting services that were long overdue.

    Anyone who thinks they can simply look at a person once and diagnose them, without considering long-term evidence, is quite ignorant. There is nothing more demeaning than having another human being look you up and down, jot notes, and tell you who you are in less than an hour. It's bullshit!

  6. my swearing post was just this really nerdy post trying to use the phrase "like a fool, kind of sick, special needs, anyway" from Dr. Horrible's Sing-Along Blog to describe different ways that nondisabled people make it hard to have a disability. I deleted it partly because of the swearing and also just because it was dorky.

    I would be really scared of ever trying to get diagnosed again because I feel like they wouldn't diagnose me because I make eye contact or something.