Tuesday, May 20, 2008

Letter To a Kid Like Me

Here's something I wrote awhile back. It's what I wish someone had told me when I was 10-12 years old.

Don’t let them tell you you’re not OK. You’re a wonderful person - everyone’s wonderful, even if they’re hurt, even if they do bad things, even if they don’t think they’re wonderful. You need to remember that. Use that knowledge as a shield between you and anyone who tries to hurt you, or says you need to be someone else.
Try to remember you’re not the only one fighting this. You may be surrounded by people who all seem to want to tear you into pieces and rebuild you as someone totally different, but chances are there’s someone on your side. You may not have even met them yet. Keep looking.
You’re not the only one in the world like you. There’s others whose minds work in similar ways, who understand how it feels like you’re an alien in human morph[1], like you look just like everyone else but inside you’re totally different. There’s a name for how you’re different. You may not even understand what’s so strange about you, but there’s still a name for it somewhere, and someday you will find out what it is. You’ll learn what kind of person you really are.
And it’s not your fault if you feel powerless, if you can’t avoid something bad. It’s not your fault if they threaten you and you give in. But fighting back can help you hold on to your power, can help you hold on to yourself. And if you figure out the right way to fight, you can help someone else. But remember, you don’t need to put yourself through more than you can handle to fight the wrongs of the world. You need to learn to take care of yourself as well. You need to find someone you can trust, someone you can be vulnerable around without them hurting you.
Don’t punish yourself. They’re punishing you too much already, and it’s not fair. You need to respect yourself, and love yourself instead of hating yourself. It’s OK to make mistakes. You don’t have to be perfect to be an OK person. You don’t have to know everything to be proud of your mind, and you don’t have to be good at something to like doing it. Don’t let them kill your love of things by making fun of how you do them. Find your own way to enjoy them.
Remember to love yourself. You need to take care of yourself. You’re not selfish if you need things. And there’s more than one right way to do things, doing it differently isn’t the same as doing it the wrong way. You don’t have to do it their way, even if you only want to do it that way because they say it’s wrong. And don’t be afraid to be yourself even when others will think the wrong thing. If they can’t kill you, then you’ll survive, and the only danger is that they’ll damage your self. And the only way to fight that is to be yourself.
Love yourself. It’s not your fault. You don’t have to be serious all the time, don’t let them take your fun away from you. Being silly is not a betrayal of the pain people are going through, it helps you cope. Don’t feel bad if you react the ‘wrong’ way, as long as you care about other people’s pain it’s OK to react in a strange way. It’s OK to laugh from fear if that’s what’s natural for you. It’s OK to find things funny even in the midst of awfulness.
Don’t let anyone tell you you’re a bad person. Everyone is valuable, everyone has some good in them. No one’s perfect. Normal isn’t perfect, in fact you may have noticed normal has some problems with it. But they can be fixed by nice normal people who like diversity. And it’s OK to be white even though white people have done bad things to the other races. Racism isn’t unique to white people, and it’s not counter-white to be nonracist. Same goes for any other difference.
Don’t be afraid to seek help. You can’t fight the world alone, find the people who can help you fight the good fight. Find someone who’ll get angry on your behalf when you are hurt. It can help remind you that you don’t deserve to be hurt.
[1] When I was around 9 years old, I was obsessively interested in a book series called Animorphs, in which five kids get the ability to turn into animals from an alien.

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Saturday, May 17, 2008

Communication Alternatives

Here's an interesting link.


Thursday, May 15, 2008

Visible and Invisible Disabilities

A commonly described divide among disabled people is between 'visible' and 'invisible' disabilities. The way this difference is described is that some disabled people are readily recognized as disabled, and others can be mistaken for normal.
What many people don't recognize is that you can be invisibly disabled one moment, and visibly disabled the next. It all depends on context.
One way that a normally 'invisibly' disabled person can become visibly disabled is by who they are with. When I was volunteering with an ABA program for autistic kids, I saw one example of this. In one part of the program, there were both autistic and NT kids doing an integrated gym class (this was for the higher functioning kids). Anyway, one kid came out of the gym at the end while I was chatting with one of the therapists, and she greeted him. I knew immediately that he was autistic. Not because of his appearance or behavior, but because of the way she spoke to him. She used the same tone of voice as she did in ABA sessions, just with better grammar.
You can also be visibly disabled by being with other disabled people. In my disabled youth group, when we go on outings, it's evident that at least some of us are disabled. And we are clearly a group, without the kind of divides that often occur between disabled and nondisabled people, so those of us who aren't visibly disabled are assumed to be disabled as well. Note that this can mean mistaking nondisabled people for disabled people. Hearing children of Deaf parents, when out in public with their parents, are often assumed to be deaf because they're signing and with people who may be more obviously deaf. Even though they aren't actually disabled, in that setting they're visibly disabled.
Some people are visibly disabled in certain settings but not in others because those settings involve skills that they lack. Apart from with my disabled youth group, the only times I've been visibly disabled is when I get lost - especially on the bus. I don't know things most people are expected to know. I act more eccentric out of stress. In general, I seem developmentally disabled. Similarly, a dyslexic child in a class discussion may not be visibly disabled, but when reading aloud in class they are.
On the Internet, many 'visibly disabled' people become invisibly disabled. At the same time, although they may not actually be recognized as disabled, some 'invisibly disabled' people become more visibly disabled on the Internet. Higher-level language problems, receptive or expressive, are the most visible disability on the Internet.
This brings me to another point. You can be in between visible and invisible disability. There are certain stereotypes of people that are 'almost' disabled, such as geeks, stupid people, 'wackos', etc, who are generally assumed not to be able to help being like that, but aren't really considered disabled. Some people who actually are disabled are recognized just enough to fall into those categories. Also, some disabled people are mistaken for people who are drunk or high on some substance, such as people with balance problems or people who show visible signs of perceptual abnormalities. Actually, this is among the most obviously disabled you can be without being recognized as disabled.
So it's a whole lot more complex than just visible or invisible disability.

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Wednesday, May 14, 2008

Late Mother's Day Post

I meant to post this right after mother's day, but other stuff intruded. Anyway, here's a poem I gave my mother on her mother's day card:

"So many parents long for a child different from their own.
You love me as I am.
So many parents hope that if they pretend evil does not happen, it won’t affect their child.
You stand by me in my pain.
So many parents try to change their child to fit the system.
You try to change the system.
So many parents listen to what experts say about their children.
You listen to me about myself.
So many parents love their child, but don’t really like them.
You like and love me.
So many parents think they are the biggest experts on their child.
You know that only I can define myself."

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Friday, May 09, 2008

Disability Identity Survey

I made a survey for disabled people about disability identity. The interface for making it was really clunky, and I couldn't figure out how to get it to categorize questions and calculate results properly. So instead, people who want me to tell them this by hand or are willing to answer further questions can enter an e-mail address.
It's based on a questionnaire I found for Black racial identity. I'm looking to find out how much the model the original was based off of applies to disabled people.
[Edit: link now fixed.]

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Thursday, May 08, 2008

Intellectual or Developmentally Disabled?

A lot of people think that for any one group, there is a single stereotype for them. This is why those stereotyped as 'able disabled' are so often described as 'breaking stereotypes'. They think there is only one 'disability stereotype', at least for any particular disability.
Anyway, one pattern I see often, which is really ironic, is the contrast between the 'intellectual' stereotype and the 'developmentally disabled' stereotype. These are viewed as opposites, complete opposites. This can get really confusing when discussing autistic people, for whom the reality is a mix of those two stereotypes with other traits thrown in.
One scenario is an 'intellectual' parent, who identifies as such, and hopes to have a child like them. They've accepted all the values that serve that stereotype, such as valuing education, dedication, knowing a lot, acting the expert, etc. And then they have a child, who is actually a lot like them, but with many of their traits intensified, and this child gets diagnosed with autism, and considered mid to low functioning. So, like most kids described that way, the focus is all on this child's weaknesses, and they're certainly not considered anything like an intellectual. Their stereotyped as a 'developmentally disabled' person, which is the exact opposite.
So their parent thinks this child is so different from them. They can't understand the child. The child blatantly doesn't show appreciation of all the 'intellectual' values, by acting so disabled and unaware of things. (In reality, they may be very aware and value many of the same things, but this is not seen.) So this parent, who has a view of themselves that focuses very strongly on certain traits and denies other traits, and an opposite view of their child, has a major barrier in accepting and relating to their child, even though they're actually very similar people. In order to value their child while fitting stereotypes, this parent would have to value completely opposite traits to what they've learnt to value in themselves.
Another pattern is a parent of an autistic child stereotyped as 'developmentally disabled', who runs into a person identified as autistic who shows prominent 'intellectual' traits. This may be a higher functioning autistic child, or an autistic self-advocate (especially if they are, in reality, relatively higher functioning). It's especially pronounced if they're a self-advocate or otherwise breaking the 'client' role (eg a helper). The parent immediately thinks 'you're nothing like my child'. Even though, in reality, they may be a lot like that person's child, either having grown and developed since that age, or differing mostly in superficial ways (eg, being better at putting on an NT mask or having better verbal skills).
And then there's the high functioning autistic person, who has been labeled with a developmental disability, but in most people's minds, they're blatantly 'intellectual', which is of course the opposite. So either their disability gets denied completely ('excuse to be a jerk', for example) or they get told that it can only affect them in certain very circumscribed ways, as if they're only autistic when at a party, or when someone flirts with them. And they get denied needed services because they don't fit the model of someone needing those kind of services. And they get overt and covert pressure to play along, to deny their disability and think of themselves as 'not really disabled'.
I'm pretty clearly in this category. As I was growing up, my differences were called giftedness or PTSD. When I first started thinking I was autistic, piles of people said I wasn't. 'There's nothing wrong with you', my father's cousin-in-law said. My mother said much the same thing. And I went on with all the coping skills I'd learnt to deny or disguise my differences, so that I really did act only slightly autistic. But despite them, I resonated so much with descriptions of autism that my self-perception steadily became more autistic.
First I thought I had a lot of 'pseudo-autistic' traits that were really trauma. But, around the same time I started realizing giftedness included a whole lot more than knowing lots of facts, I realized I had a lot of inborn autistic traits, and started calling myself BAP or a 'cousin' (as a gifted person). Then I noticed that BAP people generally were a whole lot better able to fit into society than I did, and that gifted people who felt as different as I did had IQs much higher than me, and most gifted people in the 130-150 range fit in better than I did. And I considered myself 'maybe autistic'. Then I was officially diagnosed PDD NOS, and I knew I was autistic.
But it didn't stop there. At first, I considered myself much higher functioning. But gradually I started realizing that difficulties others had were things I'd been denying and trying to hide, and that things I thought I was high functioning enough to do took much more work than I actually thought, and how blurry those lines really are. And more and more I switched from the 'Geek Syndrome' view (a modified form of the intellectual stereotype) to viewing myself as being a developmentally disabled person as well as an intellectual. At first my identification with developmental disabilities has been in acting lower functioning than I am.
First, I'd play pretend where I was a low functioning autistic person (my mom was uncomfortable about this, thinking I was making fun of them, but I wasn't). When working with developmentally disabled kids, I'd be so focused on them that I forgot myself. It was like reading a book, and the kid was the star character. Then I joined a youth group for developmentally disabled teens, and started acting more obviously autistic when with them, but at first I felt embarrassed to discuss my interests, feeling a bit like a 'fake' because I was so smart in those ways. So I'd stim in front of them and admit when I couldn't do something, but whenever I caught myself chattering about my interests I'd stop.
I'm still switching between 'intellectual' and 'developmentally disabled'. When I'm recognized as disabled in public (not in the form of self-identifying as autistic while being overtly high functioning, but someone actually noticing me having trouble and realizing I'm disabled without me telling them) I don't show them how smart I am. When I've chattered about my interests to a stranger and impressed them with my intelligence, I don't stim in front of them. It's something I've been working on, but only in a few settings can I show both sides of who I am. I'd like to get to the point where those aren't 'different sides' but all together, but I'm not there yet.

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Friday, May 02, 2008

Kanner autism

I hate how so many people misrepresent Leo Kanner's view of autism. They do it with Asperger's article, too, but at least they have the excuse that it's in another language (since the ones I know about are all English speakers). So I'm going to debunk several such claims.

"(The prevalence of classic Kanner autism, which is associated with moderate mental retardation, has not increased over the years.)"

"Asperger, unlike Kanner, included people who had average to high IQs in his definition"

In his 1943 article Autistic Disturbances of Affective Contact, Kanner said:

"With the non-language items of the Binet and Merril-Palmer tests, she [case 6, Virginia S.] achieved an IQ of 94. 'Without a doubt' commented the psychologist, 'her intelligence is superior to this'"

"A Binet test was attempted ... He [case 8, Alfred L.] finally complied in most instances in a manner that clearly indicated that he wanted to get through with the particular intrusion; this was repeated with each individual item in the test. In the end he achieved an IQ of 140." [Note: Alfred L and Virginia S were the only two children who cooperated enough for an IQ test.]

"Even though most of these children were at one point or another looked upon as feebleminded, they are all unquestioning endowed with good cognitive potentialities... The astounding vocabulary of the speaking children, the excellent memory for events of several years before, the phenomenal rote memory for poems and names, and the precise recollection of complex patterns and sequences, bespeak good intelligence in the sense in which this word is commonly used."

So clearly Kanner described children with average and above average IQs. Nowadays, the less cooperative children would likely have been tested and their refusals interpreted, robot-like, as wrong answers, just like my autistic friend who was declared profoundly delayed because he didn't cooperate at all with the test. Personally, I think Kanner's way, of declaring them 'untestable' and observing spontaneous signs of their abilities, is more fair.

"Most children and young people with Kanner syndrome will have moderate or severe learning difficulties and up to half may not learn to use spoken language."


"Kanners usually have a below-normal IQ
while Aspergers have a normal-above IQ
Kanners usually have a delay in speech
Aspergers usually don't"

The first part of these two statements is the same as the previous two innacurate statements. As for the second part, here's another quote from his 1943 article:

"Eight of the eleven children acquired the ability to speak either at the usual age or after some delay." [Of the speaking children, at least 5 spoke their first words before age 2, and at least 3 were using sentences by age 3.]

Although communication impairment, such as echolalia and not using speech communicatively, was present in all of Kanner's cases, most learned to speak, many at the usual age.

"Kanner’s Syndrome is often the lowest functioning end of the disorder, and these children (and adults) tend to be very drawn into themselves and have extremely limited communication skills."

"Kanner described children who were severely affected. His description, and the downbeat prognosis persisted for the next 30 years."

Regarding low functioning, Kanner's highest functioning case was Donald T., who in his follow-up in 1971 was described as such:

"Since receiving his AB degree in 1958, he has worked as a bank teller. He is satisfied to remain a teller, having no real desire for promotion. He meets the public there real well. ... He takes very little part in social conversation and shows no interest in the opposite sex. While Don is not completely normal, he has taken his place in society very well, so much better than we ever hoped for. If he can maintain status quo, I think he has adjusted sufficiently to take care of himself." [He wrote another article in 1972 giving case descriptions of several high functioning autistics.]

The prognosis was originally described in 1943 as:

"Five of our children have by now reached ages between 9 and 11 years. Except for Vivian S., [sic] who has been dumped in a school for the feebleminded, they show a very interesting course. The basic desire for aloneness and sameness has remained essentially unchanged, but there has been a varying degree of emergence from solitude ... Between the ages of 5 and 6 years, they abandon the echolalia and learn spontaneously to use personal pronouns with adequate reference. Language becomes more communicative, at first in the sense of a question-and-answer exercise, and then in the sense of greater spontaneity of sentence formation. ... Between the ages of 6 and 8, the children begin to play in a group, still never with the other members of the play group, but at least on the periphery alongside the group. Reading skill is acquired quickly"

Kanner made his opposition to institutionalizing autistics clear, and predicted poor outcomes for them, but if cared for in their own or a foster home, he predicted they would improve. A few would become high functioning enough to live and work independently, and those who didn't could still contribute.

"Kanner regarded autism as a consequence of harmful childrearing practices."

And here they confuse him with Bruno Bettelheim, it seems. From his 1943 article:

"In the whole group, there are very few really warmhearted mothers and fathers. ... Even some of the happiest marriages are rather cold and formal affairs. Three of the marriages were dismal failures. The question arises whether or to what extent this fact has contributed to the condition of the children. The children's aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of the early parental relations with our patients. We must, then, assume that these children have come into the world with innate inability to form the usual, biologically provided contact with people, just as other children come into the world with innate physical or intellectual handicaps. If this assumption is correct, a further study of our children may help to furnish concrete criteria regarding the still diffuse notions about the constitutional components of emotional reactivity. For here we seem to have pure-culture examples of inborn autistic disturbances of affective contact."

And in his follow-up:

"As for the all-important matter of etiology, the early development of the 11 children left no other choice than the assumption that they had 'come into the world with an innate disability to form the usual, biologically provided contact with people.' ... One can say now unhesitatingly that this assumption has become a certainty. Some people seem to have completely overlooked this statement, however, as well as the passages leading up to it and have referred to the author erroniously as an advocate of postnatal 'psychogenicity.'"

So even in the 1970s, it was already going on. People mischaracterized Kanner's words even back then. But back then, he could counter them.
Lastly, I couldn't find a specific quote, but I've read of children who developed normally until 18 months or so and then regressed being referred to as having 'Kanner autism'. Only one of Kanner's cases showed any regression, Richard M. (regression in pre-speech skills) but before his regression, he was described this way:

"The mother, in comparing her two children, recalled that while her younger child showed an active reaction to being picked up, Richard had not shown any physiognomic or postural sign of preparedness and had failed to adjust his body to being held by her or the nurse."

Kanner emphasized that these children were all noticeably abnormal in early infancy, commenting that they could not be called 'withdrawn' because they'd never been connected in the first place.

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Thursday, May 01, 2008

Reverse Discrimination

Recently, I read one black person mocking white claims of 'reverse racism'. She suggested that this is an accusation given in reaction to taking away white privilege.
When I was 12 years old, a Native girl told me I was 'too white to be a person'. Recently, I read someone mocking a white woman for being offended by the statement that 'white chicks' were untrustworthy. Malcolm X called us 'white devils'.
The same people who vehemently oppose similar statements towards other races are often willing to tolerate it towards white people. Racist jokes against white people are 'humorous' while against any other race they are intolerable.
This happens with other forms of discrimination. I've heard many women make sexist comments or jokes about men that would not be tolerated if they were made about women. Saying women aren't as smart as men is sexist, right? Then why do so many women seem fine with saying the opposite (for example, one joke states that God offered two gifts to the first man and women, saying they could chose to get either brains, or the ability to pee standing up)?
Regarding autistic rights, I see this so often in the suggestion that NTs are inherently stupid, manipulative, immoral liars, or that they are boring. Discrimination is treated as a distinctly NT behaviour, as are bullying and many other things. The same people who make claims like that are generally the autistics most prone to doing the exact things they accuse NTs of - the ones who are most prejudiced and bullying.
Now, some people claim reverse discrimination simply because they are losing the privileges they are unfairly given. This is certainly true. There are also some people who claim more traditional discrimination when they don't get what they want for very different reasons, as Joel Smith described recently. I remember someone on one listserv complaining that he was being denied some legal-type post because of his Asperger Syndrome diagnosis, but it transpired that he was in fact denied the job because he was a convicted sex offender. Now, personally, I think it's just fine to deny a legal job to someone who has shown a substantial disrespect for the law, in doing something as serious as what he'd done (I believe it was some kind of sexual assault).
But reverse discrimination does happen, and it hurts. Up until recently, I absolutely hated my skin color. White is beautiful, just as black is, but I couldn't see it. I felt personally responsible for all the wrongs that white people have done over history to other races. What I'd read never gave a hint that it wasn't just us who were racist, never discussed racism from other races. The Uyghur people, in western China, are discriminated against by the Mandarin majority. That's only one of many examples, which show that white people aren't the only racists. But non-white racists are invisible. As are many anti-male sexists, and anti-normal disabled people.
I used to think that victims of bullying were 'good guys', the bullies and bystanders were 'bad guys'. But being victimized does not make you morally superior. It says absolutely nothing about your morals. It only indicates anything about the ones who hurt you. And you should not judge an entire category of people based on the actions of some of them. It's wrong when it's done by those in power, and it's wrong when it's done back at them by the oppressed people. Revenge will not make it better, it only perpetuates the hurt.

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