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'?

Being 'Out' Nonverbally

One big concept that the gay community has introduced is 'coming out of the closet'. 'The closet' refers to pretending to be straight, so coming out means admitting that you are gay rather than trying to hide it.
Some people in the disability rights community also discuss coming out - especially people whose disabilities aren't very evident in the situation they are discussing. For example, one book I've heard of (but never actually read, unfortunately) is called Coming Out Asperger. There are differences between coming out for disabled people as opposed to gay people, but there are also similarities.
One issue that some gays have been talking about is when you are 'out' verbally, but still trying not to be too obvious about it. For example, your coworkers may know you are gay, but you don't hug your lover in front of them (in a culture where a straight person might do so).
I can certainly relate to that. Just because someone knows I'm autistic doesn't mean I'll flap in front of them. It's not that unusual for me to tell someone I've only just met that I'm autistic, if it comes up. But only with people I really trust will I actually act autistic (apart from acting intelligent and obsessive).
And this can't be solved just by choosing to be out nonverbally, because there's a difference between forced nonverbal signals and real nonverbal signals. So, for example, that one pro-choice lesbian in Citizen Ruth kissing her partner in front of a bunch of Christian pro-life protesters was forcing nonverbal signals - she wasn't kissing her partner because she just wanted to kiss her, but because she wanted to shock her audience. (Note: even though I'm pro-life, I much preferred the pro-choice characters in that movie.)
But the big problem is that often worrying about your audience inhibits wanting to act the way you naturally do. If you've spent a lifetime hiding, then fear combined with self-consciousness (that feeling that you don't belong) tends to show up in acting 'normal'. So you don't feel like being out nonverbally.
What can be done about it? I'm not sure. One thing that helps is to force those nonverbal signals until they do come naturally in that setting. If it's too scary, work up to it gradually. I've found strangers are easier than acquaintances, because they have very little opportunity to actually hurt me for being different. I've mostly been hurt by social rejection, which can only really occur if you want a relationship with them.
Anyone else have any ideas?

'He/She Can't Help It'

In large part, the groups I act most autistic in (not meaning 'upset autistic' which some people seem to think is the when someone is most noticeably autistic - sometimes to the point of equating autism with being upset - but monologuing, tangential, stimming, etc) are the groups I feel most comfortable in. I act this way more with my family than with anyone else, and in my family I show the whole picture instead of parts of it (acting both disabled and intelligent), but in some groups of non-family I act more autistic than in other groups.
The big reason is the stigma that acting strangely has. Those developmentally disabled people who get 'therapies' are very often trained out of behavior that, like my own odd behavior, is harmless (or at least less harmful than a lot of normal behavior that isn't treated by any 'behavior programs'). Flapping your hands (provided you have enough room) isn't going to hurt anyone. Odd social behavior like launching into monologues can easily be dealt with by just negotiating with the other person (like when my father says he needs to concentrate on driving so I should stop talking) just like a lot of typical behavior is negotiated. But I've met a boy whose teacher was constantly interrupting him when he flapped his hands, and heard of people being alotted only 5 minutes per day to talk about their interests - if they're well-behaved. Can you imagine someone telling you to stop every time you fiddled with your hair (or some similar mannerism) or saying you can only talk about things you're interested in during a set 5 minutes every day?
If you are disabled, you are expected to try as hard as you can to conform. If you're mildly disabled, you probably can conform reasonably well in many settings, and even though your disability doesn't disappear, the other people can pretend it has. If you're severely disabled, you can't conform no matter how hard you try, or you may not even realize you're expected to conform.
Most people know that some people can't conform, even if they try their hardest. They're still supposed to try as hard as they can, but society makes some allowances for them because 'they can't help it'. I think this is a big part of why so many people think it so important to define abnormal behaviour as 'voluntary' or 'involuntary' instead of recognizing that it's really a spectrum, and part of why there's a big division between 'high functioning' and 'low functioning' and between 'bad' and 'disabled' (when the behavior is the same - eg not responding when someone says something to you, or interpreting a command literally when that's not the intended meaning). If you can conform, you should - even when there's no good reason for that particular rule.
Some people who try to train disabled people to conform would protest that 'if they act this way, they'll get teased' (or not be taken seriously, etc). And that is a big part of how society enforces conformity - by rejection and punishment of those who don't conform. But society has two distinct methods of enforcing conformity, and the 'helpers' who try to get us to stop acting weird are using the second method. It is indeed gentler, but that doesn't mean it's OK. The focus is not on those who punish not conforming, but on those who aren't conforming. An analogy that might help illustrate is if you told a gay person 'don't let people know you are gay because some people beat up gays'. That's better than beating them up yourself, but most people these days don't think staying in the closet (conforming) is a good way to solve the problem of homophobic violence.
I've mostly learnt to conform the harder way. I was bullied a lot at school for having unusual interests, running circles around people, getting upset and crying, acting immature, and anything I did that most kids didn't do (or that I did differently, such as being clumsy and awkward in physical activities). My teachers bullied me as well - telling me that I was doing math wrong when I followed different steps or didn't 'show my work', trying to make me stop being interested in the topics I was interested in, etc - but even if they hadn't, the fact that they focused on me instead of the bullies in their attempts to stop the bullying sent the same general message. In public, if I flap my hands or squeal, people stare at me and sometimes act scared of me.
I can control these odd behaviors for the most part, and more importantly to our society, I look like I can control them. I look normal - not just my physical appearance, but also that my speech and general bearing look (even if I weren't trying to conform) close enough to normal that most people don't realize I'm disabled. Even people who know me for awhile - though they know I'm eccentric - often wouldn't realize I was disabled unless I told them. Actually, by and large, the few people who realized I was disabled without being told (or looking for it, like a psychologist) have been bus drivers, because of my difficulty navigating by bus. Note: even if you are visibly disabled, you can look like you're able to conform in certain ways - eg if you are a well-spoken person in a wheelchair, people are likely to assume you can't control motor problems, but most of them will expect you to refrain from covering your ears and screaming when you hear an alarm go off.

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?

Letter to the Autism Society of Canada

I just sent this e-mail to the executive director for the Autism Society of Canada.

"I am a 19 year old diagnosed with PDD NOS. I live in Saskatchewan.
Recently I found the National Autistic Society (UK) website and I cried. Why is the Autism Society of Canada so different from them? Last year, they launched a campaign called I Exist, about the issues of autistic adults. They really care about us, and are taking measures to help us. While the Autism Society of Canada mostly only mentions us to say how our lives are doomed because we haven't had early ABA. Your organization says 90% of autistic adults are institutionalized - if that's true, why aren't you helping us? Why are you not trying to get better lives for us, the support we need to live in our homes? Why is it that you're only helping children?
Even if you only care about your children, remember that the best estimates of effectiveness of ABA is 47% cured. That still leaves 53% of autistics who will need some kind of assistance throughout our lives. What are you doing to make sure the kids who aren't cured by ABA still get to have good lives? If you help us older autistics now, those kids won't have to struggle like we do.
I'm 19 and even though I'm very intelligent and can write well, I can't live independently. I have serious organizational problems - my bedroom, which I was solely responsible for keeping clean, got so messy I had to sleep on the couch and huge bugs were living in my room. I tried hard to keep it clean, but I just couldn't. On my own, my entire home would get like that. There are adult autistics who have had their homes condemned, and ended up homeless because they can't keep things clean. And no one would help them. My parents are willing to look after me, but what will happen when they die?"

The Missing Voice

There's this one style of writing that really bothers me. It's when someone writes 'nonfiction' from the perspective of someone else who can't describe their own experience - usually a disabled child, although people do this with pets as well. An example is available here.
It's not that people do this both with pets and disabled people that bothers me. I think very often the offense at being 'treated like an animal' is about things that are problematic when done to animals, as well. And that's true in this case, although I'll be discussing why it's problematic to do this to disabled people.
Although one problem is that it can be hard to tell who actually wrote it, that's not the biggest problem either. Often it's obvious - frequent references to 'mommy thought' with too much detail to be anyone other than her, statements like 'I can't speak or write', etc. Other times, it isn't. One website I found, I actually couldn't tell who had written it - the disabled man himself or one of his parents.
In the Faces of Autism conference I went to, they asked people to put up their hands when they named certain groups of people attending. They listed parents of autistic children, teachers, therapists, etc. At the end, they said 'did we miss any group?' I and one other person put up our hands. They'd missed two categories of people - politicians and autistic people. (There's a funny Monty Python skit about this, too. You can see it here*.)
I think these are related problems. People tend to lump disabled people and their family into one group, and act as if their interests are the same. This is especially true with disabilities that are usually diagnosed in childhood and that affect communication. And lumping those two groups together almost always means only listening to parents.
Now, parents of disabled children need to have a voice, and they need to be heard. But that's not a big problem. It's not that hard to get people to listen to them. But so often, people don't even realize someone's voice is missing. They don't even realize that they don't know what the disabled people themselves actually want, how they actually view their own lives.
Back to the 'nonfiction' written from someone else's perspective. The big problem is that they don't seem to realize it's actually fiction. You can't actually write from someone else's perspective, and really get it right. I'd find nothing wrong with it if it came with a clear message that this was written by someone else trying to imagine what it's like from their point of view. I want people to recognize what that kind of writing really is - fiction. It's fiction just like a story from the perspective of a famous person (like the Royal Diaries series) is fiction. Technically, you might call it 'creative nonfiction', which is really a fictionalized account of real events. But it's not equivalent to telling the story from your own perspective or taking dictation.
Another concern I have is that people only tend to do this with those who can't tell you their own story. Imagine writing your husband's life from his perspective - not showing him what you wrote or asking him what it was like for him, just writing it. If you wouldn't be willing to do that, then why are you willing to do the same with your child's life?
This also ties in with the saying to parents: 'you are the expert on your child.' Well, you aren't the expert on your child. You're one of the experts on your child. But the one who really knows the most about your child is not you, but your child themselves. Even if you can't talk to them and find out what they know about themselves, never forget that they do know themselves in a way no one else can. Just because you don't know their perspective doesn't mean they don't have one, or that their perspective brings no new information. And your voice may speak for your child out of necessity, but never forget the voice that is missing.

* Sorry, no subtitles.

Tropic Thunder

After much searching, I finally found a trailer of Tropic Thunder that actually used the word 'retard' that so many people complained about. After watching that trailer, I'm incredulous. No, not because it's offensive. But because it isn't.
Mark Twain's book Huckleberry Finn was banned from some schools because it uses (very frequently) the word 'nigger'. Never mind that Nigger Jim, one of the main characters, is probably the most moral person in the entire story, and that young Huck Finn learns a valuable lesson about slavery, morality, and his friend Jim. The message didn't matter to those schools, just what words were used.
Here is a transcript of the Tropic Thunder trailer 'OK to be Stupid':

"There were times, when I was doing Jack, that I actually felt retarded, like really retarded. In a weird way I had this sort of just free myself up to believe that it was OK to be stupid, or dumb."
"To be a moron."
"Yeah."
"To be moronical."
"Exactly."
"An imbecile."
"Yeah. When I was playing the character."
"When you was the character."
"Yeah, I mean, as Jack, definitely."
...
"Everybody knows you never go full retard."
"What do you mean?"
"Check it out: Dustin Hoffman, Rain Man, look retarded, act retarded, not retarded. Count toothpicks, cheat at cards. Autistic, sure, not retarded. You know, Tom Hanks, Forest Gump, slow, yes, retarded, maybe, braces on his legs, but he charms the pants off Nixon, win a pinball competition - that ain't retarded. You went full retard, man. Never go full retard."

Excuse me? Have these people protesting this movie paid no attention to the actual content of this trailer? First, the actor is talking about feeling like it's OK to be stupid - being able to stop worrying about coming off as smart. Secondly, his friend is pointing out a stereotype in Hollywood, one that really needs to be looked at - a variant of the 'autistic superpowers' problem Lisa described, or the 'making up for difference' I discussed on this blog. Both of these are very good things to say.
I don't think you should pick at words like this. It's the message that really counts. I don't think people should say 'that's so retarded' to insult other people, not because they said 'retarded', but because they're saying it's a bad thing to be. If they said 'you're acting cognitively disabled' instead, that wouldn't be any better. And I don't think Tropic Thunder's use of the word 'retard' is a problem, because their message is not offensive. We have plenty of real problems to deal with - this is not one of them.

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."

Insults to Discriminatory People

I've heard many people who support cure and prevention of autism say they find the word curebie insulting. Recently, I found a man who thinks white men are best saying he finds the words racist and misogynist insulting. As an autistic rights activist, he compared those words to the word retard, that so many autistics find insulting.
Instinctively, I dismiss those ideas. It's nothing alike. But then, I stop to think. Is it similar? Is calling a discriminatory person a hurtful word because they're discriminatory morally equivalent to calling the target of discrimination a hurtful word?
On closer reflection, I come to the same answer. No. But now I know why they aren't really the same.
Firstly, being a racist, a misogynist or a curebie means you are hurting others. When you show your opinions to other races, women, or disabled people, you hurt them. This is a fact. A big part of people's dislike for these terms seems to me to be an unwillingness to admit they are hurting someone. But that's why Native people have such high rates of alcoholism, child abuse and suicide. It's because they are harmed, systemically harmed, by racism. That's why women are more often depressed, more often victims of sex crimes, and make less money on average than men. We are also systemically harmed by sexism. And that's why adult autistics have such high rates of depression, why some autistic people wish they were never born, why prenatally diagnosed autistic people very well might never be born. We are systemically harmed by disablism.
Secondly, it is a choice, to a certain extent. Your beliefs largely depend on what you have been exposed to, but if you decide to accept that your beliefs are hurting someone and make a commitment to change, you can. You are born with your race, your gender and your pattern of abilities, and those are extremely difficult to impossible to change. I know it's possible to have facial surgery and bleach your skin, but you don't become a white person that way - though you may be able to fake it. Technically, people who've gone through a sex change surgery aren't exactly the other gender - they're physically in between, and genetically their natal gender. And there are no cures for autism, even though some autistics can learn to pass as neurotypical. It's harder than it sounds, too. Even I have trouble passing perfectly, and I'm only very mildly autistic. But even mild autism pervades how you think and by extension, how you behave.
There are some things very hard to change that hurt others. A good example is pedophilia. It's probably about as hard to change as being gay. And there are a bunch of ways people are working on preventing and curing pedophilia, and that's valuable research, for the sake of the children that pedophiles are attracted to. Your beliefs aren't easy to change, but compared to your sexual orientation, it's no big deal.
And one last thing. Autistics, black people and various other groups have chosen names for themselves, that offend no one. Curebies, misogynists and racists haven't. They don't seem to just want a different name - they don't want any name for what they are (except maybe 'normal'). I can't accept that. I need to be able to name those attitudes, and the people who hold them. That's how we can stop the harm these attitudes cause - by looking at it clearly.

Growing Backwards?

In the book When Autism Strikes: Families Cope with Childhood Disintegrative Disorder, one parent discusses an analogy that 'your first child runs through you like a river'. She says that we all know a river can go astray, dry up, or get polluted, but rivers don't go backward. Yet that's what her son Jordan seemed to do when his regression started.
But children with CDD and other forms of regressive autism don't really grow backwards. If someone was growing backwards, then they'd act like they did at a younger age. When you have a hyperverbal, sociable 2 year old growing into a shy, somewhat quirky 4 year old who then becomes an aloof, obsessive, echolalic 6 year old, that 6 year old is clearly not like he was at any age before 4. Before 2 years, he was a sociable nonverbal child who couldn't walk becoming a sociable walking child who used single words becoming a sociable running child who used communicative sentences. He was never echolalic, obsessive or aloof.
This is part of the mental age fallacy. An autistic child at any age is not the same as a same-age, younger or older child. And an autistic child who regressed is not like they were at a younger age.
So far, I've just been looking at outside appearances. If you look at what is going on inside the child, the analogy of growing backward fits even less.
Amanda Baggs described 'regression' like this:

"it’s your entire brain shifting around, focusing on some things that a lot of people find unimportant or bad, failing to focus on some things that a lot of people find important or good. Imagine that the things it is focusing on are exactly what you need to be focusing on. You are becoming the sort of person you need to be."

This sounds pretty much like a lot of the kind of changes that normally go with growing up. Not growing backward.
She also talks about how someone with brain damage can change afterward, which is another way you could view some cases of autistic regression. In that case, you're certainly not growing backward, and if your behaviour post-brain injury gets viewed at all as like a younger version of yourself, it's purely coincidence. Saying a person with brain damage is 'growing younger' because they have lost skills they previously had is like saying a 4 year old who went deaf and then forgot how to talk has 'grown younger' because xyr communication skills superficially resemble a younger child. The kid's expressive language skills may be said to be at a 1 year old level, but firstly, their receptive language skills are poorer than a 1 year old while their motor and cognitive skills are much better, and secondly, when that kid was 1, xe could hear. Xe couldn't speak for very different reasons than now.
Here's an analogy I thought of awhile back:
Three children are traveling along three paths, that appear to be pretty close to identical. They are traveling at the same rate.
One kid is normal - xyr path may be straight or winding, but other people view that as the expected path for a child to take.
The second child seems to be heading along that path, but then xyr path turns when the other one doesn't, or doesn't turn when the other one does, and you realize xe was actually heading along a different path all along. This is what autistic regression usually is like.
The third child really is heading down the usual path, but then xe gets jostled onto a different path and start walking along it instead. This is more like brain damage.
None of those children ever went backward. They never retraced a part of the path they'd seen before. Instead, they all kept going forward, but the path ahead diverges from the other two children in various ways.