Saturday, December 29, 2007

When My Autism Gets Too Big

[second post today]
I recently found a book my parents got me for Christmas a couple years ago which I really hated. It's called When My Autism Gets Too Big. I thought it could be very useful had they not described it as the child's 'autism' getting too big, but as it is I don't want any autistic child reading this book with the idea of using this to help them.
It reminded me a bit of the common practice among parents of autistic children of referring to a meltdown or something similar as an 'autistic moment'. I protested that once on a listserve for parents of autistic Down Syndrome kids, but was not able to describe the biggest problem with it.
I act more or less obviously autistic at different times. Sometimes I'm upset and self injure, speak repetitive phrases or can't talk. Sometimes I'm happy and I flap and trill. Sometimes I talk intelligently and pedantically about rare syndromes to a person I've just met. Sometimes I avoid looking people in the eye and don't react when they greet me. Sometimes I act fairly normal, sometimes I act autistic in one of the myriad ways that autistics tend to act.
All this time, the underlying autistic cognitive style I have is the same. I'm just in different situations, feeling different moods, making different choices. NTs are not judged more or less NT depending on whether they're chatting with their friends, studying a subject they're interested in, taking a break to listen to music they enjoy, crying or yelling at someone or both, or really excited looking forward to something fun. They're just acting the way that person acts in that circumstance.
And so many autistic children don't really understand what autism is. If you watch videos about 'recovered' autistic children in which they're asked what autism is, a common reply is to demonstrate some of the stims they used to do. 'Autism is flapping your hands like this.' Studies have shown that siblings of autistic children tend not to understand autism very well - for a variety of reasons, autistic children likely have an even poorer understanding of autism than that.
And I hate the idea of a child who doesn't really understand how they are different associating 'autism' with being overloaded. If they think that's all autism is, they will not understand why they have such different likes and dislikes than the other children, why the others don't make sense to them, and why they are so good at some things and not others. If so, what's the benefit of the diagnosis for them?
The biggest benefit of being diagnosed autistic for me, and many other older autistics, is increased self-understanding. But we can search out and understand the information out there about autism, and think critically about it, and keep looking for our answers. Autistic children often can't do this. Their only source for understanding autism is what the adults in their life choose to tell them. And if what these adults choose to tell them is just associating autism with overt behaviors or specific moods, then their diagnosis gives them no help in the difficult task of understanding themselves - a task already made difficult by the pervasiveness of the NT perspective and lack of discussion of the autistic experiences.
I wish they'd taught kids to think of it as, if not overload, then 'too much X', like the standard 'too much birthday'. NT kids, when they are overloaded, are not told that their 'allism' has gotten too big. Instead, people say they've had 'too much' of whatever they were doing. Don't tell autistic kids that autism means overload or stimming or something like that. Make it clear that autism goes deeper than that.

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Fantasy Violence Isn't the Real Problem

My Dad showed me a thing about Mr Rogers talking to the US senators about children's TV. I agree with a lot of what he says, I think.
I don't think violence in TV (or any fictional violence) is necessarily a bad thing. What I think is bad is a) violence as an effective solution to problems, and b) good guys and bad guys.
My favorite stories are ones that either portray internal conflict, or portray conflict between two people where both sides have a valid perspective and the ideal is to find a way to take into account both sides.
From the perspective of educational children's TV, that has the added benefit that you can directly model effective conflict resolution. In The Explosive Child, Ross Greene talks about three stages of problem-solving. The first two are to get both sides on the table - he advises getting the more agitated party's side out first so they can be calmed by being heard and better able to cope with hearing the other person's perspective. The last step is to find a mutually satisfactory agreement.
I read City of the Lost, one of my brother's Bionicle books, which confirmed my dislike of Bionicle. Besides the fact that the work strikes me as poorly written, with uninteresting dialogue and uncompelling descriptions, it is a prime example of a book that uses good guys and bad guys rather than portraying a real conflict where both sides have valid perspectives. And they could so easily have done it.
One group, the Barraki, were exiled to the bottom of the sea, where they magically turned into water creatures. They lived there awhile in peace until a contructed island of the Matoran suddenly sank. The Matoran settled there, harvesting 'airweed' to maintain a giant air bubble around their city so they could survive. But they happened to have unwittingly settled directly on the Barraki lands.
Now, this is an interesting plot so far. Two groups, one who have lived there for ages and have a very good claim to owning the land, another who have taken their land, but can't really go back to where they came from. It echoes the conflict present in so many places between the colonizers and those they colonized. Most Canadians may have descended mostly from Europeans, but we don't really belong in Europe anymore. The Native people are the rightful owners of this land and we stole it from them, but we live here too. It's become our home too. It is a conflict without an easy solution.
But the Bionicle tales don't give any good advice for this. Instead, they designate the Barrakis the 'bad guys', and suggest that the ideal is for the Matoran to drive them out or destroy them so they can live in peace in their new home. I can't really remember the ending, I don't think it really had a resolution (it is, after all, only one book in a series), but certainly you are encouraged to root for the Matoran and revile the Barraki.
The City of the Lost is a very violent story, ending with a giant eel going around eating people indiscriminately. But that's not my big problem with it. My big problem with it is that it suggests an unjust solution to a complex and legitimate conflict.

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Friday, December 21, 2007

Don't Hit Them When They're Down

On the Autism Speaks forum, someone posted saying he hated being autistic and wished he'd never been born, and advising parents with a high likelihood of having an autistic child to avoid having children. Another autistic person replied by attacking him and when scolded for that by another person, pointed out how serious the implications were of what the first person had said.
My instinctive reaction, when hearing an autistic person saying they think autism is a bad thing, is 'Oh, no, what will the curebies make of this?' I suspect that was why the other autistic person attacked him for saying that. Statements like that by an autistic person can literally cost people their lives.
A similar problem was described in the book The Courage to Heal regarding ethnic minorities. A Jewish woman and a Latina women both described being afraid to admit that they were sexually abused by their parents because they worried it would feed into negative stereotypes of their people. Muslim women have been discouraged from discussing spousal abuse for the same reason.
But we can't attack the victims, nor can we pretend there's no problems and no diversity of opinion. We can't censor people. I know I feel the temptation sometimes to pretend I have no problems, or that my problems are all unrelated to autism. But doing that leaves my problems unsolved, and feeds into the idea by curebies that 'we don't know what real autism is like'.
I've never connected this with autism, but I've certainly felt like a terrible, worthless person on occasion. I have not found being angrily contradicted and told that I shouldn't say those things helpful. Even worse is people agreeing with me. What works is to reach out to me and tell me that I'm a valuable person and that things won't always be so bad for me. Here's an example of the three ways to reply:

Depressed person: I'm a terrible, worthless person and I wish I'd never been born.
Other person: You're right. You are a terrible, worthless person. Don't worry, we'll find a way to make you worthwhile.

Depressed person: I'm a terrible, worthless person and I wish I'd never been born.
Other person: How dare you say such terrible things! No one is terrible or worthless. (except maybe you, the depressed person hears)

Depressed person: I'm a terrible, worthless person and I wish I'd never been born.
Other person: It's so sad that you feel this way. I am convinced that everyone is valuable, including you. I wish you could see how valuable you truly are.

There is no definite way to help someone like that feel better, but the last choice is the one most likely to work. Note that the last two choices both involve disagreeing with the person, but the last one diagrees by affirming the person's worth, which feels much better than being scolded for expressing yourself. It's important to remember that people who say such things about themselves usually have a long history of being criticized for things they say, do or are. That's why they feel that way. Intellectually, choices 1 and 2 are quite different, but the emotional impact is similar, and someone denigrating themselves is not speaking from intellect, but from emotion.

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Thursday, December 20, 2007

Lion Award Thingy

OK, I've been awarded this thing by Shiva. So, I need to list 3 things that are needed for good, powerful writing. I'm hesitant to list these things, because I strongly suspect I'll list some which are only necessary for some people and not others. So, I'll pick some which are true for me and probably for others.

Firstly, you need to think about it. Echoing what someone else said isn't that good - it may be powerful writing, but not your powerful writing. Better yet, quote or link to them so others can read their thing in it's entirety. You also need to have thought about it so you really understand what you're talking about. Or even better, recognize you don't know and ask a great question.

Secondly, be willing to listen. You don't have a monopoly on the truth. Although you shouldn't take every criticism as a sign your writing is no good, neither should you immediately search for a way to prove the criticizer wrong. They may be wrong, but then again, they may be right. They may be wrong in some things and right in others. Everyone has a perspective which is important - no one's perspective is the 'only word' on things.

Thirdly, admit mistakes. This ties in with the second, but you should also admit mistakes even if others don't call you on them. I once tried to force an autistic girl into the pool when she was refusing to go in. If I see that girl again, I will apologize to her, because what I did was wrong. Even though I meant well. Even though I changed my mind when she resisted. It was still wrong. Although that example isn't about writing, this is important for writing as well (I readily admit I'm not very good at this). If you can't admit the mistake to other people, at the very least admit it to yourself.

And now I'm supposed to give this award to 5 people. My first choice would be Amanda Baggs, but she's already been tagged with this. Joel Smith has also been chosen already. As far as I know, David Hingsburger hasn't been tagged with this yet. Tag!

I'm not much of a blog-reader, so I'm really struggling at this. Amanda Baggs's blog is the only one I check regularly.

Kathleen Seidel hasn't been tagged, as far as I know. I don't read her blog much, as most of it seems to be about the mercury-autism people and I'm not really interested, but I love her website. Oh, and I'll see if I can write something about this.

Lisa Jean Collins has a blog here and a newer one here. Not sure if she's still around, but I hope so, because she's a great writer.

Elmindreda is another great blogger. I love her thing 'I'm me. I'm actually the only one who's me. I tend to like that fact, except when I don't.' Wonderful autistic wordplay, like Godel, Escher and Bach.

Victoria Biggs is an excellent writer. I got her book Caged in Chaos awhile back and really enjoyed it, and was glad to discover she has a blog too. I don't think she's been tagged with this either.

And lastly, here's another lion - De Flamse Leo (Flemish Lion). My Dad's ancestry is Flemish.

Monday, December 17, 2007

Persistence to Unreachable Goal is Bad for Your Health

A recent study (search 17760771 on PubMed) found the following:

"The notion that persistence is essential for success and happiness is deeply embedded in popular and scientific writings. However, when people are faced with situations in which they cannot realize a key life goal, the most adaptive response for mental and physical health may be to disengage from that goal. This project followed 90 adolescents over the course of 1 year. Capacities for managing unattainable goals were assessed at baseline, and concentrations of the inflammatory molecule C-reactive protein (CRP) were quantified at that time, as well as 6 and 12 months later. To the extent that subjects had difficulties disengaging from unattainable goals, they displayed increasing concentrations of CRP over the follow-up. This association was independent of potential confounds, including adiposity, smoking, and depression. Because excessive inflammation contributes to a variety of adverse medical outcomes, these findings suggest that in some contexts, persistence may actually undermine well-being and good health."

A good argument for autistics not trying to become neurotypical, in my opinion.

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Mild Social Difficulties

"The lack of demonstrated empathy is possibly the most dysfunctional aspect of Asperger syndrome.[2] Individuals with AS experience difficulties in basic elements of social interaction, which may include a failure to develop friendships or enjoy spontaneous interests or achievements with others, a lack of social or emotional reciprocity, and impaired nonverbal behaviors such as eye contact, facial expression, posture, and gesture.[1]
Unlike those with autism, people with AS are not usually withdrawn around others; they approach others, even if awkwardly, for example by engaging in a one-sided, long-winded speech about an unusual topic while being oblivious to the listener's feelings or reactions, such as signs of boredom or wanting to leave.[3] This social awkwardness has been called "active, but odd".[1] This failure to react appropriately to social interaction may appear as disregard for other people's feelings, and may come across as insensitive. The cognitive ability of children with AS often lets them articulate social norms in a laboratory context,[1] where they may be able to show a theoretical understanding of other people’s emotions; however, they typically have difficulty acting on this knowledge in fluid, real-life situations.[3] People with AS may analyze and distill their observation of social interaction into rigid behavioral guidelines and apply these rules in awkward ways—such as forced eye contact—resulting in demeanor that appears rigid or socially naive. Childhood desires for companionship can be numbed through a history of failed social encounters."

(Wikipedia entry on Asperger Syndrome)

Descriptions like this make me wonder if I'm really autistic. I have mostly normal nonverbal signals. I make eye contact fairly normally. I talk a lot about my interests, but I'm more likely to notice boredom or discomfort than most autistic people are. I understand a lot of social stuff fairly well.

But descriptions like these are another matter:

"My group has rules and punishments about everything. There are seven of us and there can only be seven. I mean, we have kicked people out for breaking the rules and only then can we add someone.
We have rules about what we wear. You can only wear your hair up (like in a ponytail) once a week. You can't wear a tank top two days in a row. You can only wear jeans on Friday and that's also the only time you can wear sneakers. If you break any of these rules, you can't sit with us at lunch. Monday is the most important day because you want to look your best - it sets the tone for the rest of the week. So wearing something like sweats on Monday is like going into a church and screaming 'I hate Jesus!' when you walk in the door. Friday is downtime. When we hang out that night, we wear sweats, watch movies, and talk about what bothered us during the week.
If you want to invite someone to lunch [from outside the group], you have to formally invite them and the group has to vote on it. We do this because it's like buying a shirt without your friends telling you whether you look good in it or not. You may like someone, but you could be wrong. If three or more people in the group really like her, we offer the girl an extended invitation - for a whole week. That's a trial period - it's like getting a dog at the pound and trying her out before you get her a license and call her 'Fluffy.'
Gabrielle, 15"
(Queen Bees and Wannabes, by Rosalind Wiseman)

That book, about the social complexities of normal teenage girls, really shows me that I'm autistic. I was oblivious to all that stuff. Thinking back, I can identify one Queen Bee and two Targets (including me) from my class in grades 5-6 but the rest I have no idea about. In grade 10, I was a Floater because many of my friends didn't know each other, but I have no idea where any of them fit into the social hierarchy. I didn't even notice there was one!
I remember sitting and wondering why two girls were talking about such boring subjects - who did what to whom and who's in love with whom and who got incredibly drunk at which party. I couldn't keep any of those people straight and I didn't care what they were up to.
Now, autistics form social networks too. But they are looser, because there's much less thought put into it. This actually mimics some cultural differences - my father has noticed many people from India and nearby places are much more into social networking and social rank than Western people.
I wonder how many autistic teens who are supposedly 'indistinguishable from their peers' really are like me - they get the stuff that adults understand about teen culture but not the stuff that adults don't get, and are as out of place as an adult in among the other teenagers.

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Saturday, December 08, 2007

Ransom Notes campaign

NYU Child Study Center has an awareness campaign called 'Ransom Notes'. Here's what I emailed to them in reply.

On your webpage, I noticed the 'Ransom Notes' awareness thing, with stuff about ADHD, Asperger Syndrome, Autism, Bulimia, Depression and Obsessive-Compulsive Disorder.
I am diagnosed with PDD NOS, which is a condition related to Asperger Syndrome and Autism (in my case I'm more AS-like), and with PTSD, which in my case results in depression and mild OCD-like behavior.
I would like to say clearly that there is an important difference between the two types of conditions I am diagnosed with. PTSD is something I have, which causes me serious psychological pain and does feel a bit like 'being kidnapped'. In contrast, PDD NOS is something I am, which affects my thinking in such profound ways that I cannot imagine it any different, has many positive effects as well as negative ones, and only harms me in making me fit poorly within my environment - change the environment and I'm fine.
Portraying conditions like Bulimia, Depression and Obsessive-Compulsive Disorder as kidnapping a child is a vivid analogy for how it really does feel to have those conditions (I'm basing this off of both personal experience and personal accounts I've read by other people). Portraying conditions like Autism, ADHD and Asperger Syndrome as kidnapping a child is offensive to those affected by those conditions, and encourages others in an erroneous and harmful perception of them. That's not the kind of awareness I'd like. In fact, treating fundamental brain differences like they are separate from the person and a terrible thing is part of the reason I have PTSD (I experienced abuse in two very distinct settings, one of which was well-meaning but very harmful abuse from my teachers, who thought my differences were something wrong with me).
Worse, your descriptions of what the supposed 'kidnappers' are making the ADHD, autistic and aspie kids do is offensive as well. ADHD behavior is only a problem in certain circumstances. Studies have shown that if a teacher is highly engaging, less children meet behavioral criteria for ADHD - because ADHD kids are not incapable of paying attention, they just need more stimulation. And the idea that it's a detriment to others is a concept frequently used to justify treatment that harms the recipient or at the very least doesn't benefit them. It's justified with abusive behavior, but it is not justified when the person is merely acting annoying or weird.
Regarding the ability to interact with others, I have yet to meet a single child, with any disability, who was incapable of interacting with others - including many much more disabled than any autistic kid. I know one boy with severe CP who can barely move and can't speak, but he looks at things and groans to communicate. Interaction is a two-way street - he can't interact with someone who ignores him, but that's not really his inability. And social isolation, firstly, is in the eye of the beholder. It's likely in the month of December I will only spend one day with anyone else my own age. But I'm not lonely - I don't need interaction that much. Other times I do want friends, but no one wants to be friends with me. That is not a social impairment on my part, but their own intolerance of diversity - after all, openly gay teenagers often have trouble making friends too.
As for caring for yourself, who in our society really is independent? Apart from hermits living off the lands (ironically, many of them are probably on the autistic spectrum) no one is. But only if you're dependent in the 'wrong' way does it ever get noticed. My father can usually fix his own car. Most people can't, so they hire a mechanic. This is not considered a disability. Most people can tell time within about an hour or so, and can certainly tell when mealtime comes. I can't (in the absence of external cues). This is considered a disability. In another society, however, it might be the opposite.

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Friday, December 07, 2007

My Interests

This is my contribution to the current Disability Blog Carnival. The key phrase is 'a few of my favorite things' so I thought I might want to describe the history of my interests.
For those who don't know, a distictive (and diagnostic) characteristic of autistic people is unusual interests. Autistic people often have interests that are unusually intense (for example, spending most of your waking hours thinking about your interest), narrow (only 1-2 interests, the interests themselves often having a fairly narrow focus) and unusual (for example, a 14 year old researching rare syndromes). My interests fit all three of those criteria, although the narrow criteria is only barely met.
My first word was 'meowmi', which probably indicates my earliest interest - cats. When I was 3 months old, one of our cats had kittens, and for awhile in my infancy we had 5 cats. My parents gave one of the kittens away when she got old enough, so then we had 4 cats - 3 of which were highly child-appealing, playful kittens.
I also played with one toy, a shapesorter, obsessively for awhile. As soon as I'd figured out how to not only put the shapes in but also get them out without opening the container, I lost interest in that toy.
My interest in cats broadened into an interest in animals that refocused into an interest in the rainforest. My favorite country was Brazil, where the Amazon rainforest mostly is. I remember meeting a new pastor at our local church and telling him my toy monkey had come all the way from Brazil to meet him, and that he had a prehensile tail. I demonstrated this by tying the monkey's tail around my arm. The interest in the rainforest led to an interest in environmentalism, because every book and movie I saw about the rainforest emphasized how fast it was disappearing and how many species were being lost.
After reading Silverwing I decided my favorite animals were bats. My Dad says I told him that my favorite animals were bats, cats and dogs, to which he asked "in alphabetical order?" This fit into my interest in the rainforest pretty well. My best friend shared my interest in bats and for the Halloween party at school, we both appeared as bats! She's the same friend who made me a twist tye snake at one point and started my whole thing of making twist tye creatures.
I also developed an interest in genetic engineering and at one point said I wanted to be a scientist when I grew up. The kind I meant was a 'mad scientist' who creates weird creatures for no better reason than curiosity and interest.
Somewhere around that time I started reading the book series Animorphs and became obsessed by it. I insisted that it was real, that Yeerks were real. My school decided to try to stamp out this interest, which only made it stronger. I suppose I must've scared them by insisting it was true, but I didn't really believe it. I just wanted to believe it.
I also had an obsessive interest in black holes, sparked by the song Cygnus X-1 by Rush. This also led into an interested in the beginning of the universe, but I disappointed by the lack of facts about how it actually began. And the idea of alternate universes really appealed to me. After awhile I dropped that interest, but came back to it from another angle after reading The Subtle Knife.
My interest in environmentalism broadened after awhile into an interest in world problems, and I obsessed for awhile on famine and war in Africa. Then when my school gave us a 'say no to drugs' drug education thing I became obsessed with drug addiction. I was being badly bullied and was pretty depressed at this point, and in general when I'm depressed I think about societal problems and other unpleasant things.
I also watched a movie, the title of which I can't remember, in which some aliens tried to kidnap children as pets. I latched onto that idea and made many twist tye stories about that. In all of them, unlike the movie, the children actually were captured and were trying to deal with that somehow.
I developed an obsessive interest in languages after awhile. I had a Bengali babysitter and learnt Bengali when I was 1 year old, but later forgot it. I also attended French immersion from Kindergarten to grade 6. After awhile I decided I wanted to learn various other languages, but never stuck with one long enough to really learn it - except Dutch, which my father urged me to learn because his ancestry is Flemish. I'm not really fluent in Dutch, but if you speak it to me in short statements I understand most of it. After awhile I developed an interest in endangered languages, and in reaction to reading Lord of the Rings I became interested in invented languages. Because my Dad is a computer programmer, I also was interested in computer languages for awhile.
In reaction to a Disability Awareness day at school, I developed an obsessive interest in disabilities. I wandered around with my eyes closed, sometimes waving a stick around, begged my mother to let me ride in a wheelchair whenever I saw one unoccupied (she never let me), borrowed the crutches my parents had gotten from the doctor when my mother hurt her foot and never returned (my father now uses them when his undiagnosed arthritis-like joint condition acts up), and learnt Braille, fingerspelling and a little bit of ASL. I lost interest in disabilities after awhile, then returned to it when my mother wrote an article about a glue-sniffing mother that discussed FAS and I decided to research FAS. This led into researching autism, and recognizing myself in Temple Grandin's writings about autism, which led into searching for more stuff by autistic people, finding out about the autistic rights movement, and eventually getting diagnosed autistic.
Also, I developed an interested in the Creatures series, started when my mother bought me Creatures Adventures. This also rekindled my interest in computer languages because you can create your own add-ons. And it fulfilled my wish to be a 'mad scientist', in a way, because you can genetically engineer (gengineer) the creatures in these games.

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Wednesday, December 05, 2007

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.

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Monday, December 03, 2007

If I'd Had ABA

[Note: ABA stands for Applied Behavioral Analysis, a common therapy for autism that has some serious ethical concerns associated with it.]

I've been reading a commenting on a book about ABA treatment for autism, that I got free in a conference. I have also worked as an volunteer in an ABA program, and been the recipient of treatment from my teachers which differed from ABA mainly in being less effective at reaching the intended goals. (For example, they never grasped that being sent home from school when I misbehaved wasn't an effective punishment - it must be time-out from reinforcement, not time-out from constant conflict, in order to be a punishment.)

My autism was diagnosable around when I was 6 or 7 years old. (However, I wasn't actually diagnosed until I was 15.) Here's my suspicion of what would've occurred if I had received ABA therapy at that young age.

I would've been considered seriously non-compliant. My instinctive reaction to someone trying to control me is to fight them on almost everything. I even developed an aversion to using a tissue to blow my nose because it was so incredibly important to my teachers.

They would've put me on a program to encourage compliance. What they generally do, according to my book and the head of the program I volunteered at, is to increase rewards and start giving orders that are very likely to be followed. I would most likely have resisted those, developed an aversion to whatever rewards they did and refuse to obey any command of theirs even if it was something I wanted to do. If they told me to eat some chocolate I might've even refused, or if I obeyed it would be despite their command. (And I'd feel bad about it afterwards.)

If it was a reward that was only available when I complied - as is recommended - then I'd definitely get an aversion to the reward. In my mind, it would be linked to the power struggles. So anything I actually liked about it would probably be neutralized by them using it to reward me. This has happened with things the school got me to do, like skating. I used to enjoy skating before I went to school, but after a few times skating with my school I hated it.

If they followed the ethical standards laid down for ABA, I doubt they'd have ever gotten me to comply more than rarely. Letting them control would've felt worse than missing out on the rewards. If they used painful aversives, maybe they could have broken me. And I use the term 'broken' advisedly - it would've been the same psychological thing as breaking someone in torture. Indeed, ABA with painful aversives (such as the Judge Rotenberg Center does) is pretty much indistinguishable from torture. The few times I gave in, I held out in my mind, thinking intensely to myself about how much I disagreed and feeling very helpless and angry and disgusted. It was awful.

There might have been moments that were good. Moments where they seemed to become a different person from the one constantly pressuring me to comply. I know I was not myself when I worked in ABA. I had a fake persona of 'ABA therapist'. Some people say ABA makes kids robotic - I think the therapists are more robotic than the kids. (Ironically, behaviorism has no way to explain the behavior of behaviorists.) If the therapist ever let his/her mask down, I'd probably have treated them like two distinct people - the ABA therapist and whoever they really were, who'd probably be a nicer person, at least from my perspective.

Certainly ABA would not have helped me. But I'd have been lucky, because I would be more myself than most autistics who get ABA end up. I'm an idealist and a rebel, like Kestrel in The Wind Singer. Kestrel rebelled against the rigid rules of her town Aramanth, I rebelled against the rigid rules of my school. Neither of us bend - we stay rigid unless it's strong enough to break us. People say it's better to bend than break, but those who bend are damaged more by mild abuse. Those who don't bend until they break are less damaged by anything which isn't strong enough to break them, but more damaged if they are broken.

However, ABA generally requires parental consent. My parents were a major source of strength for me because they stood by my right to be myself, and didn't want the teachers to change me into their mold. So had I been diagnosed younger, I still might not have gotten ABA because I doubt my parents would have accepted their opinion that I had a problem. (After all, they didn't when my principal said I was AS when I was 12.) But if they had, I'd have known my parents agreed to this. I'd have known it was their choice. I might not have resisted then - after all, it's much harder to write off your parent than your teacher.

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