Self-Diagnosis

Recently, I was reading Michael John Carley's book Asperger's from the Inside Out. At one point in that book, he starts talking about self-diagnosis. I don't have the book with me right now, so I'll just summarize what he says:
Firstly, he estimates 99.9% of self-diagnosed aspies really are on the spectrum (the .1% who aren't, he claims, are typically claiming to be AS because the condition they really have carries greater stigma). He says at first he felt it was just fine to be self-diagnosed, and gives an example of a self-diagnosed aspie he knows who is doing quite well. But then he noticed in his support groups that despite his 99.9% comment, repeated frequently, self-diagnosed aspies seemed much more likely to think that he doubted they were autistic. And this made him think that most aspies probably need a psychologist's confirmation in order to feel secure in their aspie identity.
This made me think. I've actually had two separate experiences of self-diagnosis on the autism spectrum. With the first one, the self-identification as autistic, my experiences are a lot like he says - I called myself 'probably autistic' until I was officially diagnosed. And deep down inside, I kept wondering if maybe I was actually stupid and rude, as I'd believed before self-identifying as autistic. It was my diagnosis of PDD NOS that stopped that.
For my second self-diagnosis, of pathological demand avoidance, an official diagnosis is just not possible. The only center that diagnoses PDA is in England and only sees children under 16 years old. When I emailed the author of the original description of PDA, she wouldn't even give me her opinion about whether I had PDA, based on my description of myself. So no official diagnosis. But now I don't really doubt that I'm PDA. And what happened to do that, is that my mother read the description of PDA and told me it sounded just like me. So, in essence, my mother diagnosed me.
I've heard autistics refer to themselves as 'self-diagnosed and peer-confirmed', meaning that they self-diagnosed, then met other autistics who agreed with their self-diagnosis. My self-diagnosis of PDA is a bit different, because my mother's not autistic, but it's the same general idea - a non-professional confirming a self-diagnosis. It seems to me that maybe what's needed, for many people at least, is just someone else agreeing with their self-diagnosis. That other person needs to be seen as knowing enough to make that judgment, and as someone who'd be willing to say straight out if they didn't think you really fell into that category, but they need not have a degree.
I also wonder if this uncertainty about self-diagnosis is itself an effect of how much the category of autism is 'owned' by professionals. Virtually all gay people are basically self-diagnosed, and it's rare to see such uncertainty among gays (granted, homosexuality is also much more easily defined, so that could be it instead).
Any thoughts?

The Social Value of Demand Avoidance

I read a great book called The Wind Singer. In this book, a set of twins live in a very regimented, controlling walled city called Aramanth. One of them, a girl named Kestrel, is one of the story characters I've identified with the most. She is very idealistic, passionate, and stubborn. She is demand avoidant, though I wouldn't say she has the clinical syndrome characterized by that, because she's not autistic enough.
Anyway, no one in Aramanth is really happy, or at least not as much as they would be in a freer society. But most people can cope. Kestrel, however, can't cope, can't accomodate herself to her environment, so she's the one who changes it.
I'm not sure who it was, but someone once said that "The reasonable man accomodates himself to society, but the unreasonable man expects society to accomodate to him. Therefore, all progress depends on the unreasonable man." The way I see it, demand avoidant people are the 'unreasonable' people in that saying. We're like the canary in the coal mine - the same unpleasant things that others can tolerate are intolerable to us. Teachers with rigid ideas, rigid lesson plans, rigid teaching styles aren't really good teachers for most kids, but they are terrible teachers for demand avoidant kids.
I remember thinking about one girl I know with Rett Syndrome that she might in some ways be better off if she had meltdowns. Because she really needed to know what was expected - if she didn't know, she was confused and functioned much more poorly. But that's not that overtly unpleasant to other people or disruptive to the system she was in, and it was easy to confuse that with her disability. Whereas another girl I worked with, who screamed, self-injured and bit people when her routine was changed - well, everyone working for her made sure to keep a regular routine going, because they couldn't handle her like that. (Of course, in other ways the Rett girl was better off not acting like that - she didn't get hurt, she was probably less upset, and her helpers didn't get scared of her. Also, she was exposed to more things, some of which she couldn't necessarily handle, but some of which was educational or enjoyable in various ways.)
As for demand avoidant autistics, a good example is ABA. Most autistic self-advocates are either opposed to ABA in general, or at very least opposed to most/all ABA programs actually in operation. On Youtube, there are a lot of videos of autistic kids getting ABA, and seldom do those kids seem happy. They seem to be putting up with something unpleasant in exchange for a reward. ABA is all about the child accomodating other people, with no recognition that the child needs to be accomodated by others as well. And the ABA-treated autistics I've met all seem to have very low self-esteem (either that, or they used to and have recovered).
Now, most autistic kids can tolerate ABA, and make progress in an ABA program. Demand avoidant kids aren't like that. I've written elsewhere about how I would have acted in an ABA program, based on my behavior in a controlling school - this is typical of children with the subtype of autism defined by demand avoidance. And because of that, the advice about educating kids like me strongly discourages the use of ABA. I heard one parent say that she wished this syndrome wasn't considered an autism spectrum condition because the standard autism treatments don't work on these kids - I say, based on my experience with autistic kids of all kinds, that the methods that work well with kids like me also work well (with adaptation of course) with all sorts of autistic kids. And with none of the ethical issues of ABA.
Which brings me to my last point. Demand avoidance has a social value in sending the message that there is a problem here. But one danger is that the demand avoidant kid will be treated as an exception, and get what they need, without any benefit to the rest of the children who have a less obvious need for the same treatment. Just because a child doesn't absolutely need a certain environment doesn't mean they won't be better off in that environment. It's like if you saw the canaries in the coal mine having trouble breathing and just said "Oh, canaries need better air than this" without taking into account that the same air is harming the miners to a milder degree. We need to listen to the messages that these 'canaries in the coal mine' are sending.

Accepting Imagination Deficit

Autistic people are said to have an imagination deficit. At first, when I heard that, I outright rejected it, saying things like 'the people who think autistics lack imagination are the unimaginative ones'.
In my case, I've come to realize that I actually have a form of autism in which imagination is usually a talent, certainly not a deficit. Based on that, I've been researching 'creatively gifted' kids, to better understand what that actually means.
But it just occurred to me that if, as I believe, there are some people who are inherently more creative, there must also be people who are inherently less creative - just as the presence of intellectually gifted kids requires that there also be developmentally delayed kids. Whether these unimaginative children are autistic or not, they, too, are part of neurodiversity, and should be accepted for who they really are and viewed as valuable individuals. But whereas I have no trouble accepting both gifted and delayed kids, I find it hard to accept unimaginative kids.
What would unimaginative kids be like? Well, according to this study, they'd be tolerant, practical, reliable, dependable, responsible, logical, understanding, appreciative, good-natured and sincere. To me, that sounds mostly like a mix of good organizational skills and being a people-pleaser. I can accept that people like that are useful, that they counteract some of the problems creative people tend to have, that while creative people tend to be better at coming up with ideas, these people would be better at actually implementing them. But I think of the joy and beauty of creating something new, and I don't really feel that those things make up for not having that.
Now, I'm sure I'm not being fair to them. Likely, things that have little appeal to me bring a similar kind of joy to them. I know I'm doing exactly what Amanda Baggs criticized here, but I don't know how to stop from doing that. Or, as Zilari explained in a comment on the above post, part of my checklist of things someone must have in their life to be happy is 'creating things'. It's certainly part of what I need in my life to be happy, but clearly not that way for many other people. But I just can't imagine how someone could be noncreative and happy that way.
I'll just have to keep working on it.

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?

Email to Digby Tantam About Demand Avoidance

I just emailed the following reply to the article Malice and Asperger Syndrome:

"I am a 19 year old autistic person officially diagnosed with PDD NOS and self-diagnosed with Pathological Demand Avoidance (technically, it was my mom who said I had it - I wasn't sure).
I've read your article Malice and Asperger Syndrome, and I don't think that is an accurate explanation of PDA. It sounds to me like you are probably describing a different condition instead.
I am not at all like Alice, Richard, Hugo, Tricia, Amanda, Felicity or the boy who lied to his aunt about his uncle's death. As for your list of TFAS traits:
* lacking obvious eccentricity and clumsiness - I am slightly clumsy and can fake neurotypical in one-on-one interaction reasonably well, so I fit that.
* seeming immature - I'm not sure how I seem. I am delayed in self care skills and have separation anxiety, which probably make me seen immature, but I am intensely interested in psychology and medicine and can talk at the same level as a professor in those areas, which probably makes me seem mature. I think I tend to look younger than I am because I don't wear makeup or revealing clothes (both due to tactile sensitivity and lack of interest in appealing to men). I don't tend to ask personal questions of other people or ask to hold their things. I do ask to hold babies or small carryable animals, but many people do so and I have the usual preliminary compliments and questions.
* conceiling disability - I do try to pass for normal sometimes to avoid bad reactions, but not to the extreme you describe. In fact, I'm quite open about being disabled and will often disclose my autism to strangers!
* lack of special interest - as mentioned above, I'm fascinated by syndromes. I'm also intensely interested in fantasy, particularly vampires, werewolves and other human-like mythical creatures.
* long periods of inactivity - I am physically quite inactive, but almost always reading something, writing something, etc. Even when I'm doing nothing, I'm thinking and fantasizing. Watching me, I doubt someone would get the impression that I'm inactive in any area other than physical exercise.
* repetitive activity is concealed around strangers - I do hide my stims around strangers because I've been bullied a lot. If I trust them to be accepting, I won't hide my stims. If I were seeing a psychologist, I would probably stim openly in front of them, because it's their job to be accepting of that.
* flying into a rage - this is where the accuracy of the description of PDA for me becomes clear. The vast majority of my meltdowns are because someone is trying to force me to do something and I get scared and stuck in resisting. For example, I'll be getting ready to leave the house in the morning, and my father is getting anxious about time and yells at me to hurry, at which point I get upset and stop getting ready - instead, I interfere with the others getting ready because my father often threatens to leave me behind. We have a long commute every day so there's no way I could make my own way in, and my separation anxiety is worse when I'm upset. And although I'm acting angry, what I am feeling is terror. I only rarely hit people, and never break things. Usually I just yell that they hate me, etc. This is not a voluntary thing - I feel compelled to do that, because I am scared.
* socially distressing acts initiatiated 'out of the blue' - the only time I ever act that way is when an earlier problem was not sufficiently resolved and I'm still upset about it (but more often in those cases I don't stop acting upset in the first place). In all other cases, there is a clear trigger, which is always either someone else overloading me (by humming, grabbing, etc) and refusing to stop, demands on me given in angry tone or demands I find unfair, or some other perceived attack (eg my parents saying hurtful things about me, or someone lying to me and persisting in the lie when I point it out, etc)
* poor nonverbal interpretation, poor scores on emotion-matching tests - I have much milder social problems than that. I do fine on emotion-matching tests and am pretty good at reading people's emotions 1:1. But I don't understand social hierarchies and self-made groups, such as who is friends with who, who is popular, etc. I also tend to misinterpret frustration, etc as anger at me, which would not show up in a test because I only react that way in real interactions - a photo of a person can't possibly be a threat to me.
* trying to wind people up because they are easier to read - this is very much not true for me! I am terrified when others are mad at me, and very upset when others are sad around me. It would make no sense for me to deliberately induce such an unpleasant situation. If I'm scared because I don't know how someone is feeling, I withdraw and try not to be noticed. I don't try to provoke them to attack me or induce sympathetic anguish in me by being upset! I only upset others when I have no choice, because I feel endangered by what they are doing to me or making me do. Even then, I try to fight them off without upsetting them too much. I tend to be passive-aggressive because of this."

The links on the side

You may notice that I now have three disability related links. Here's why I chose them, as well as some related ones:

Autistics.org has the tagline "The REAL Voice of Autism". This is in response to some curebie organization calling themselves the voice of autism when if they have any autistics speaking, they're just tokens.
They have a compilation of writing by autistics, including most of Amanda Bagg's writing. Incidentally, Amanda Baggs has a blog at http://ballastexistenz.blogspot.com, on this same website. They also have some good links, but unfortunately after a server failure they lost most of them. Some they've gotten back, however.
One thing they link to is a great page called http://www.gettingthetruthout.org, which starts out seeming like most curebie websites, describing a low functioning autistic woman, but it turns out the autistic woman is the author of the website and she describes how she wants to be viewed.

Next, there's the Lissencephaly Network. Lissencephaly is a condition where the brain is smoother than in most people. Lissen means smooth I think, and cephaly is definately brain/head. Because of a smooth brain, lissencephalic people are profoundly delayed and have various other disabilities including CP and seizures. Much more info about that at the Lissencephaly Network.
But why, out of all the websites I see about various rare disabilities, did I link to that one? Because they view lissencephalic people, part of that group so often rejected and dismissed and discriminated against, as worthwhile. For examples, in the articles section there's a section titled "you just don't get it!" which shows to me that these parents do get it. They view their kids as worthwhile. I especially like the one titled "No Trades Allowed".
Which reminds me of a book I want to read but haven't got the chance yet. This book is First Contact: Charting Inner Space, by David Hingsberger, available at Diverse City Press. In this book he talks about the value of profoundly developmentally delayed people. I first heard of it from Amanda Bagg's article The Meaning of Self-Advocacy, in which she quotes that book. My favorite line from that quote is "For those labeled "profoundly retarded," emphasize the word "profound.""

Next is Neurodiversity.com. It's a good website, but not as important to me as the other two. But now that Ooops! Wrong Planet seems to be gone, it's the one I know of with the largest link collection. It's also one that was much more important to me in earlier times, and it's where I learnt about ("pathological") demand avoidance, which has helped me understand some aspects of my behavior. Although I think my own "can't help the won't" is trauma related, I probably am neurologically similar to demand avoidance people, and certainly my outward behavior has been similar at times. Which reminds me of the PDA Contact Group, which is not much different from most little parent-run support groups for rare or newly described syndromes. But which I'm eventually planning to post on their forum about my own "can't help the won't". And by the way, "can't help the won't" is a phrase applied to demand avoidance, that it's not that they can't do it, nor that they are simply defiant, but that they can't help refusing to do it. I'm like that some of the time, and it seems to be related to feeling triggered. My current theory about it is that I was pressured into cooperating while being sexually abused. Similar to deciding to hold in my feelings to prevent conflict with teachers when I entered my second school, when the abuse stopped I think I decided to never, ever give in like that again. So it ended up where if I'm amenable to a demand I'll do it, but if I'm not, I either procrastinate or refuse, if I refuse, the person demanding it pressures me, this reminds me of my abusers pressuring me, I get triggered, and at that point I am restricted by a number of emotional rules, especially not giving in, but when it gets really bad exposure anxiety type stuff comes up where I can't say clearly what is going on for me, I must hint at it. Once I was dissociated and Mom kept asking me what was going on for me and I was trying to tell her what was going on without being allowed to say "dissociated", for example. In terms of procrastination, sometimes I become willing to do it, more commonly it eventually reaches the point where I outright refuse and the process goes on from there.

Yet another tangential post. Had it not been tangential, however, it would've been much less interesting.