Really good question. My personal favorite answer is "nobody knows."
There are so many problems at so many levels about how things are currently defined.
1) It's officially defined by behavior, as interpreted by people who don't have it (which leads to "lacks empathy, lacks imagination, stimming is purposeless, forced eye contact helps learning, skin shocks are ok because they don't really process the pain, and on and on). Until I'd seen a lot of first-person descriptions, I couldn't relate to the 'professional literature' at all (that was back in the 90's, admittedly).
2) Trying to figure out what they "core" problems seems a tough chicken-and-egg problem. Are social issues to core, or is it sensory (or cognitive, or emotional) differences that lead to social problems? If the world were set up differently, which things would cease to be problems, and which wouldn't?
3) Getting away from individualized, medicalized definitions, is the experience of "wow, it's creeping me out how much sense you people make. It's like you've been following me around taking notes on my life and then wrote about it..." IOW, the there seems to be something recognizable in the experiences, and they way they're described (and it's interesting how this seems to cut across functional levels and the current system of categorization).
4) ...ugh, brain overload, and I can tell this post is going to get too long already...
Some essays that I find interesting about the question "what is autism?"
Jim Sinclair wrote this (http://www.autreat.com/jim.html)
Quote:
The DSM IV diagnostic criteria for autism include the following:
I. A. Qualitative impairment in social interaction
B. Qualitative impairment in communication
C. Restricted repetitive and stereotyped patterns of behavior, interests and activities
II. Onset is prior to age three.
What do those mean from an autistic point of view? Some examples:
I. A. Difficulty understanding social situations; lack of awareness of social conventions; lack of interest in social conventions even if aware of them; little or no responsiveness to external approval or disapproval; inability or disinclination to relate to large numbers of people, but deep, meaningful relationships with a few people who are able to form individualized, non-prefabricated connections with the autistic person
B. Difficulty with some combination of content or mechanics of language use, including grammar, vocabulary, fluency of responding, and/or identifying significant features of what people are talking about; difficulty interpreting nonverbal cues such as facial expression, body language, tone of voice; absent or abnormal production of nonverbal cues; special problems with interpreting and expressing emotional signals
C. Intense focus of attention on topics of special interest; lack of awareness or interest in topics that are of interest to most people; difficulty remaining oriented when environment or routine is changed
II. Having been autistic since birth (or at the very latest, late infancy), the person does perceive and experience a "different world" than the one most people live in--and being *native* to that world, the person has little identification with non-autistic standards of normality.
Ballastexistenz had blog post touching on this recently:
http://ballastexistenz.autistics.org/?p=634Quote:
What I just told someone who didn’t match current autism stereotypes.Posted by ballastexistenz
It’s not really that you contradict what autism is, it’s that descriptions of autistic people came about like this:
Kanner saw a bunch of people and grouped them together. He observed some things about them. Some of the observations were accurate. Some were more conclusions than true observations. Then he came to conclusions based on both types of observations. Many of his conclusions were false. (Note: Most of Kanner’s patients would today have a high chance of being diagnosed as AS and all but maybe one or two fit at least one definition of high functioning. Several went on to college. There are many modern myths about who these people were.)
The next person came along and put more people into the category of autistic. These people included people who appeared like Kanners patients appeared, people who were like Kanners patients were, people who appeared like Kanners conclusions, and people who were like Kanners conclusions.
This has been going onin many iterations for generations. And since 1980 it’s been happening to Asperger’s patients and conclusions too. (His patients were roughly the same as Kanner’s, but he drew different conclusions.)
This means that people who get called autistic are an incredibly diverse group of people and that virtually nobody matches the conclusions. And yet those who either match the conclusions, think they match the conclusions, pretend they match the conclusions, or may or may not match but other people can force fit them to the conclusions — those people will get called more typical or more autistic. Even though they are neither.
So knowing all that I’m never surprised when people don’t match the conclusions. The conclusions come from generations of faulty observations, faulty logic, and faulty science. And then no matter what the conclusions are, people who match them or who think they match them or can be said to match them by others, suddenly start getting diagnosed more. It’s a disturbingly tangled thing and I wish more people noticed.
POST CONTINUES (click here)
Some other essays entitled "What is Autism?" at
http://www.autreat.com/definitions.html
17 Jun 2010, 1:17 pm
