Digby Tantam's Reply

I emailed Didgy Tantam awhile ago with a reply to his article Malice and Asperger Syndrome. I've now received the following reply:

"Dear Ettina
Thank you for your interesting observations. It is possible that you do not meet the criteria that Elizabeth Newson used.
Best wishes
Digby Tantam"

That's all? Just 'you might not have PDA'?

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?

Asperger Syndrome, Nerds and the Why Label? Debate

Here is something I e-mailed the author of a book I read recently called Nerds:

"I liked much of what you said in your book, but one thing I didn't like is your description of Asperger Syndrome.
Firstly, why the focus on 'functional impairment'? That is not an inherent characteristic of anyone. By that definition, an AS-acting person who had no friends and was bullied severely in elementary school but is now a well-accepted engineering student has ceased to have Asperger Syndrome, despite the fact that the exact same traits their classmates hated are all still present. They haven't changed - their situation has.
I am certainly against viewing the characteristics of 'mild autism' or Asperger Syndrome as pathological, but I don't think the best way to do that is to just think of them as nerds instead of autistic. Sure, that might bring people like me more acceptance, but what about the wonderful people I know who are much closer to the stereotype of 'retard' than 'nerd'? What about people like Amanda Baggs ( ballastexistenz.autistics.org ) a wonderful autistic woman who types to communicate and has frequently been referred to as retarded? I'm not willing to leave them behind in my quest for acceptance.
And besides, being called a nerd never gave me the key to understanding myself. Being called autistic has. Though scientists don't really understand autism very well, there's more actual attempt to understand them than nerds. Nerds are known to have trouble interacting with others, but the question 'why?' isn't really asked. According to science, autistic people can't read the nonverbal signals (according to autistics, because we have different ones). If I'm a nerd, there's no help for me. I have to navigate it all on my own. If I'm autistic, I can find out why I have trouble with certain things and what might be able to help me. Of course, I'd much rather pick the third option - understanding the unique needs of the unique and wonderful group of people I happen to belong to and meeting our needs without stigmatizing us - I'm fighting for that very thing.
I hope you can agree with that goal. And I don't want it just for people like me, but for those who fit so poorly into our society's expectations that it seems obvious to virtually everyone that they're incapable."

Is It Really 'Twice Exceptional'?

I've been looking through the Hoagies' Gifted page about gifted disabled kids. A common term, used by them as well as many others, to describe such people is 'twice exceptional'. Besides the non-specificity of this term (it applies equally well to multiply disabled people, such as deaf-autistic, blind-CP, etc) I have another problem with this term.
It assumes the person has two distinct differences. This is fairly accurate for gifted people with disabilities that aren't based on how you think and feel, such as blind gifted people or gifted people with solely physical disabilities. But is it really accurate to describe a gifted-LD, gifted-autistic, gifted-ADHD or any other gifted and developmentally disabled person as 'twice exceptional'?
On one online IQ test, I scored 158. In general, I tend to score in the 130s (the cutoff for giftedness is generally 130). I am also diagnosed with PDD NOS, a form of autism. So, therefore, I must be twice-exceptional, right?
Except that I've only got one brain, and there is not an 'autistic part' and a 'gifted part'. Except that I'm gifted in a characteristically autistic way. Except that my gifts are common among autistics, and my difficulties are common (in a less severe way) among gifted people. Except that I don't think giftedness and autism are really very separate at all. Except that my difficulties are caused by the exact same underlying traits that cause my gifts.
For an example of the last, and most important, point: I am extremely creative. I am also very disorganized. I've found that creativity is considered a common trait in gifted people, and disorganization is common in autistics (where it is generally subsumed under the broader category of executive dysfunction).
Here's the thing - both are caused by the same trait. I call myself a tangential thinker. This means that my thinking is like a mental web, with many interconnected ideas, and I easily wander off into various tangents. This causes creativity in that I find myself unexpectedly connecting ideas in ways most people wouldn't connect them - thinking of how things connect and putting them together in distinctive ways, and looking at things from unusual perspectives. This also causes disorganization because I don't stick with one thing the 'right' amount of time, instead sticking with some things too long and others too short, I wander from objective reality into ideas, I wander into the intricate details of a tangential topic and I do not naturally think in sequences. From my perspective, they're really the same thing. But the 'positive' results of tangential thinking are labeled creativity and subsumed under giftedness and the 'negative' results of tangential thinking are labeled disorganization and subsumed under neurodevelopmental disability.
Most gifted-developmentally disabled people are probably like this - in reality, many traits of both conditions are the exact same trait in a different circumstance. A common example is visual thinking. Many visual thinkers have trouble with language, especially with reading, while being gifted at math, mechanics, drawing or other visuo-spatial activities.
PS: I also think that for developmentally disabled kids, giftedness shouldn't be only having a full-scale IQ over 130. In the American Journal of Medical Genetics Part B, volume 134B, pages 104-109, they describe a girl with a full-scale IQ of 99 whose subtest scores ranged from 5-18 (normal is 7-13). I think kids like her are gifted disabled, too, despite having a nongifted IQ.

Language of Us and Them

http://www.oafccd.com/lanark/poems/language.html
A link I was looking for awhile ago but only found now.

Viewing Disabled People as Childlike

Amanda Baggs has recently posted a thing about Bernard Rimland's death. John Best commented with a bunch of nasty comments, one of which was telling Camille that she should giver her child treatment for mercury poisoning 'so that it will be out of diapers someday'. As well as the reference to an autistic child (does Camille even have a child? I can't remember. If so, how would he know if xe is in diapers or not?) as it, this comment also shows the view that being in diapers all your life is a horrible thing.
Disabled adults are often compared to children, and disabled children to younger children than they are. Often this comparison seems meant to devalue disabled people. I've seen people say the same nasty things about newborns (claiming that there's nothing going on in their minds) as they do about severely disabled people. I've seen people describe disabled people as 'perpetual children' in a way that implies that being a perpetual child makes you less worthwhile.
Often disabled people react by insisting they are not like children. But they don't ask why it is that they are being compared to children, or why this should be a bad thing. What's wrong with being childlike? Why are disabled people so often compared to children?
It seems to me that the commonality is dependence. Disabled people and children need more assistance than nondisabled adults. Disabled people and children have more difficulty contributing in the strictly defined way that our society seems to value.
A lot of people seem to view children as being worthwhile mostly because they will be adults someday. People talk about children as 'the future'. It's like children are simply adults-to-be, and what worth there is to childhood itself is mostly in how it prepares you for adulthood. If you consider children's worth to be primarily that they'll be adults sometime, and the care given to them primarily as investing into our future, then a 'perpetual child' would be waste. A perpetual child would be receiving without giving, a burden on others. That is precisely how disabled people are viewed.
But I think there is worth in children besides who they'll be. I find worth in who a child is, right now. Children contribute, as children, things that, though they are devalued by society, are very worthwhile.