15 June, 2011

the difference between Asperger's and autism

from my disability page here

Hi, I was just wondering why you keep using words like "ASD" and "autism spectrum disorder" and "autism" and "Autistic" about yourself when it's pretty clear that you have Asperger's and not autism at all.

Well, that is a good question. Can it be "pretty clear" that someone has Asperger's and not autism? What is Asperger's anyway? What's the difference?

I don't think there is a difference. This isn't to say that everyone with ASD is the same, or that I'm denying the privilege I get from being a person with a relatively mild disability, when some people with ASD are quite severely disabled. But I do think there aren't two distinct types of people with ASD called "people with autism" and "people with Asperger's."

You might be interested to know that there is even another ASD diagnosis besides those two. It's called PDD-NOS and when doctors give it to people they mean "this person has ASD that's milder than Asperger's" or "this person has ASD that's more severe than Asperger's but milder than autism" or "this person has autism but I don't want their parents to flip out so I'm going to give them a diagnosis they've never heard of" or "this person has the traits of Asperger's but they have an intellectual disability or they had a speech delay which people with Asperger's aren't technically supposed to have" or a billion other things. There is also a diagnosis called Nonverbal Learning Disorder, which is something that doctors diagnose people with even though it's pretty much exactly like mild ASD, and some people think that only happens because there is a lot of stigma attached to ASD so doctors don't want to diagnose it.

This is pretty boring to read, but just imagine how much more boring it is to go around with for example a PDD-NOS or an NVLD diagnosis and have people going, "but do you have autism or Asperger's??" And no the solution is not to get rid of the PDD-NOS and NVLD diagnoses and stick to autism and Asperger's, because those are hard to separate too. For example, some imaginary people I made up for you so you can do a diagnosis braintwister:

A. ASD person who is pretty good socially and has good self-care skills, but is nonverbal
B. ASD person who seems very verbal when they are assessed by a doctor, but can't talk when they are stressed, speaks in a very disorganized fashion, and has trouble pronouncing words in a way that other people can understand
C. Person who is quite impaired by their sensory issues, to the extent that in loud places they are perceived as someone with a severe developmental disability--who is actually extremely verbal and has normal intelligence
D. Person who has mild ASD that only affects them a little, in terms of being disorganized and a bit socially inept, but has an intellectual disability that keeps them from being able to read or write very well
E. Person who as a young child was nonverbal and seemed severely affected in other ways, but became verbal as they got older and has worked really hard to learn to do a lot of things, and now doesn't "look disabled" to the average person
F. I could make up some more examples but I am again becoming bored so I will just tell you about a cool exchange I had with someone once:

Me: My friend has cerebral palsy.
Other person: Oh, how does it affect him?

The reason I thought this was cool is because I think it's often not useful to talk about disabilities in terms of "mild," "moderate," and "severe." I mean, sometimes it's necessary to use those terms as shortcuts I guess, but when you're talking about an individual I think it makes more sense to say whether they can walk, whether they can talk, and if so what is the way they walk and talk like? What is hard for them? What is something that they've learned to do on a regular basis, but it still kind of tires them out? What are they good at? What do they like to do? Do some things make them upset that wouldn't make a non-disabled person upset? Can other people tell they're disabled? How does the disabled person feel if other people can tell? How do they feel if other people can't tell? Do they ever take steps to try to keep people from "reading" them as disabled? What is their social life like? How are they at academic stuff? How are they at handling transitions? Are they clumsy? Do they make noises sometimes? Do they want to be in a relationship and if so how's that going for them? Do they live on their own? Can they eat lots of different foods and can they tell time?

I just think that, although the terms ASD and autism may seem overly broad to you, it is much better to use a broad term and then fill in the specifics than it is to act like autism exists in two distinct types, especially when there are so many stereotypes associated with each type. I'd rather someone just find out what I am like by knowing me instead of demanding that I tell them my diagnosis or my level of "functioning" or whether I am "mild."

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