A Different Kind of Autistic
I'm seriously thinking of quitting from autistic advocacy and going out on my own.
Not that I don't think it's OK to be autistic. But I'm not standard for an autistic person. Yes, I know there's a lot of variation, but the vast majority of autistic people have certain traits in common with each other that I don't have in common with them.
That, in itself, doesn't make me any less eager to be involved with autistic advocacy groups. I don't think there's anything wrong with the way I am, and I don't see anything wrong with the way most autistics are either. But some people seem to think recognizing I'm not like most autistics, and that there is a diagnostic category someone invented that describes me much better than just 'autistic' does, is something I should not do.
If they could give evidence why I'm not different from most autistics, I'd pay attention to it. On other occasions I've misunderstood descriptions of autistic traits and assumed I was different from people because of that. But they haven't commented at all on whether or not I am a different kind of autistic person. They've just attacked the only label I've found to describe people like me. They've just said I'm not supposed to define myself that way.
Why? Well, because it's Pathological Demand Avoidance. And 'pathological' is a bad thing (which is why I've renamed it Newson Syndrome, which they've completely ignored) and 'demand avoidance' is assumed by them to be - I don't know what, but something really offensive, rather than just 'avoiding demands' (which I actually do). And somehow saying I fit into this category is supposed to mean I think I'm pathological and bad.
And they don't even question the idea that PDA is a bad thing. They insist that description can't possibly be a neutral way of describing someone, even if you rename the condition. Somehow, the fact that autism was described just as negatively, if not more so, by Leo Kanner and yet they call themselves autistics doesn't seem to matter. It's OK for them, but not for me.
I finally found kids who sound just like I was when I was younger, and read descriptions of adults a lot like me. And because I tried to look for adults like me among the broader community of autistics, I get attacked. Why do they get to define themselves, but I don't? Why do they get to define my reality for me?
Not that I don't think it's OK to be autistic. But I'm not standard for an autistic person. Yes, I know there's a lot of variation, but the vast majority of autistic people have certain traits in common with each other that I don't have in common with them.
That, in itself, doesn't make me any less eager to be involved with autistic advocacy groups. I don't think there's anything wrong with the way I am, and I don't see anything wrong with the way most autistics are either. But some people seem to think recognizing I'm not like most autistics, and that there is a diagnostic category someone invented that describes me much better than just 'autistic' does, is something I should not do.
If they could give evidence why I'm not different from most autistics, I'd pay attention to it. On other occasions I've misunderstood descriptions of autistic traits and assumed I was different from people because of that. But they haven't commented at all on whether or not I am a different kind of autistic person. They've just attacked the only label I've found to describe people like me. They've just said I'm not supposed to define myself that way.
Why? Well, because it's Pathological Demand Avoidance. And 'pathological' is a bad thing (which is why I've renamed it Newson Syndrome, which they've completely ignored) and 'demand avoidance' is assumed by them to be - I don't know what, but something really offensive, rather than just 'avoiding demands' (which I actually do). And somehow saying I fit into this category is supposed to mean I think I'm pathological and bad.
And they don't even question the idea that PDA is a bad thing. They insist that description can't possibly be a neutral way of describing someone, even if you rename the condition. Somehow, the fact that autism was described just as negatively, if not more so, by Leo Kanner and yet they call themselves autistics doesn't seem to matter. It's OK for them, but not for me.
I finally found kids who sound just like I was when I was younger, and read descriptions of adults a lot like me. And because I tried to look for adults like me among the broader community of autistics, I get attacked. Why do they get to define themselves, but I don't? Why do they get to define my reality for me?
Labels: assumptions, autism, covert discrimination, demand avoidance, distancing
posted by Ettina at 3:03 PM
4 Comments:
PDA, as i understand it, is something that a lot of autistic people get accused of...
IMO, a better way of interpreting it is as a form of "inertia", which was one of the themes of this year's Autscape conference (http://autscape.org), and on which i think this might be of relevance: http://autscape.org/programme/presentations.html#tick-and-stick
I share your views on words which are regarded as universally negative, when in fact they are (at least potentially) neutral. I need to blog about that subject, actually (in particular with regard to the "retard" controversy, which i have mixed views about, but agree with some of your thoughts on).
Something which i think is absolutely key to autism advocacy is the recognition that not every autistic person is the same - in fact, that there are as many variants of autism as there are autistic people, and that not conforming to *absolutely every* so-called "diagnostic criterion" does not in any way invalidate someone's self-definition as autistic. That is, in fact, why i call myself simply "autistic", rather than the supposedly-more-precise diagnosis of "Asperger's syndrome", because i find the different "official" diagnostic categories within the autistic spectrum to be both arbitrary to the point of meaninglessness, given the individuality of every autistic person, and too often used for divisive purposes or to "invalidate" what autistic self-advocates have to say.
Unfortunately there are narrow-minded and prejudiced people even within the autistic self-advocacy community. It sounds like you have encountered too many of them...
I often feel bitter to the people who decided AS should be separate from autism, actually, because I doubt if there wasn't so much controversy about autism vs AS that saying I'm a different kind of autistic would be such a big deal.
I think it would be useful to divide autistics into subtypes (with no better/worse and recognition that not everyone fits into a single subtype) because there's so much variability that just saying 'I'm autistic' really doesn't tell you much about me. A bit like how saying 'I have learning disabilities' (the US meaning of the term - eg dyslexia) tells you absolutely *nothing* about what the person's strengths/weaknesses are, while terms like 'nonverbal learning disability' actually do. Of course two autistic people, no matter how different, will probably have more in common with each other than either does with most NTs, but much less than two NTs usually have in common.
The big problem is that the subtypes most autistics know about are pointless divisions, and are used in harmful ways ('because you are AS instead of autistic, you don't understand autism as well as I - an NT parent - do, and shouldn't speak for autistic people unless you say what I want you to say'). But that doesn't invalidate the whole idea of subtyping autism.
One thing I hate is that in some circles, PDA seems to be getting a similar stigma to 'borderline'. Like the borderline label, PDA describes a group of people with good and bad qualities, and who need to be understood as they are, but both labels are being used as codes for 'difficult and unreasonable person'. I think this says much more about what society thinks of 'badly behaved' people than whether such labels should be used at all.
I think the most useful subtyping of autistics is not by functioning level (and HFA/LFA and even AS are clearly primarily functioning labels) but by more important features, such as different needs, strengths/weaknesses, etc.
I could comment on a lot of this post but what I'd like to pick up on is the renaming of PDA to Newson's Syndrome; such a good idea. I don't care what other people call it, words are just words and I happen to like those ones. It's not highly recognised as a diagnosis anyway so it would mean about as much to people as PDA would. I wonder how possible it would be to get that name universally recognised...
HI Ettina, I'm wondering if you are involved with PDA communities in any way these days? I've just come across your wonderful blog and would loe to know how things are going for you!
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