Sunday, December 17, 2006

More Listservs

Here is a continuation to my earlier post listing listservs I belong to.

AutAdvo is an autism advocacy group. This is the group I generally go to when I need to reassure myself that I'm not alone in fighting for acceptance of diversity. Like many lists, people who disagree with the primary viewpoint are sometimes flamed, but one special thing about this list is that, unlike many other lists I'm on, someone usually steps in and says that though they don't agree with that person's viewpoint, flaming them is not a good thing to do. There is a general norm that encourages rational discussion instead of personal attacks.
This list is similar to AutAdvo, although it appears to be younger. I haven't been that active in this list however.
This group differs from AutAdvo and AS-and-Proud-of-it mainly because it's specifically for those on the autistic spectrum, while the other two welcome parents and others as well.
AC stands for 'autistic and cousin' and GLBT stands for 'gay, lesbian, bisexual or transgender'. As the name suggests, this group is for autistics who are also different in sexual orientation or gender identity (or both). I joined it because I'm autistic and asexual.
ADD stands for attention deficit disorder (I don't like the word disorder). This is a fairly small group for ADD and learning differences. I was active in it awhile ago but kind of got sick of seeing constant uncritical acceptance of medication and not knowing how to respond.
Coffin Lowry Syndrome is an X-linked condition causing developmental delay and various physical difficulties, the most distinctive of which are drop attacks. This list is very inactive. I asked to join a more active list, from the Coffin Lowry Syndrome Foundation, but was rejected by a woman who seemed to think I was 'naive' for thinking kids like her son actually were valuable people.
Cri-Du-Chat Syndrome
Cri du chat is french for 'cat's cry'. This condition is caused by a 5p deletion and is characterized by developmental delay, a distinctive cry that resembles a kitten's cry, distinctive appearance and various other traits. This group isn't one of the more progressive groups, but they haven't been nasty to me either. I was thanked for giving advice to a woman whose daughter was upset about being different.
Iwill continue later.

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Thursday, December 14, 2006


On the Angelman Syndrome listserv there was a request to post the list on people's blogs, so I decided to write a post about some of the listservs I belong to.
The Angelman Listserv
Angelman Syndrome is a condition caused by having no active copy of the UBE3A gene, usually due to 15q11q13 deletion. It is characterized by severe developmental delay, no speech, ataxia, seizures, hyperactivity, decreased sleep and frequent laughter and smiling. This list mostly consists of parents of Angelman Syndrome children, with a few exceptions (myself included). I stopped being really active in this list quite awhile ago when I was flamed for daring to say that maybe Angelman Syndrome kids wouldn't want a heaven where they're cured. A lot of the people acted like somehow they had personal knowledge of what heaven would be like eg "in heaven, my child will be able to speak." However, before then I also got some nice comments, especially when I answered questions about the genetics of Angelman Syndrome.
The Spina Bifida Listserv
Spina bifida is a condition in which part of the neural tube is underdeveloped so that some of the spine is poking out. I joined this list awhile ago but haven't been very active. In fact, I don't think I've posted yet, and I've only read a couple posts.
Trisomy 9, broadly defined, means there are three copies of part or all of chromosome 9. Most commonly it's either trisomy 9p or mosaic trisomy 9. This listserv is not really big, but it's fairly active. I occasionally post stuff, such as asking if apraxia of speech is common in trisomy 9p (it apparently is).
The Williams Syndrome listserv
Williams Syndrome is a condition caused by a 7q11 deletion in which individuals are mildly-moderately developmentally delayed, hypersocial and music-loving, with 'elfin' facial appearance and poor spatial and math skills. In general this list seems more aware that different isn't always bad than many others, possibly because Williams Syndrome has been recognized as being associated with musical talents such as perfect pitch.
The CDG listserv
CDG stands for 'congenital disorders of glycosylation'. These are a group of related metabolic conditions causing various features such as cerebellar hypoplasia, developmental delay, stroke-like episodes and a variety of health issues including liver problems and poor blood clotting. I don't think I've posted much to this list - mostly I just read other people's posts.
ACC stands for agenesis of the corpus callosum, meaning that the individual doesn't have the brain section that forms the primary connection between the hemispheres. Some people with ACC are severely delayed, others are apparently normal, but many are in between, with learning disabilities involving integrating different skills. I've noticed a lot of commonalities between autism and ACC, and like participating in this list partly because of that and partly because of the quirky sense of humor some of the members have.
Trisomy Listserv
Trisomy refers to having three copies of a chromosome or part of a chromosome. The trisomy listserv includes parents of children with a wide variety of conditions, with trisomy 13 and trisomy 18 the most common. I posted a blog entry awhile ago about one archived post from this list and when I posted the link to that entry on the list, I got some positive responses. A lot of these parents have been told their children have no chance of surviving and seen their children survive, partly because they did not decide that the kids would be better off dead. So in general this list is strongly anti-eugenics.
I will probablky finish this list later.

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Wednesday, December 13, 2006

personality test results

A lot of personality tests don't describe me accurately. I came across the website and decided to take some of them.
Here's one:

Factorlow scorehigh score
Gregariousness46%quiet, reclusiveengaging, socially bold
Sociability58%withdrawn, hiddenwarm, open, inviting
Assertiveness30%timid, gunshycontrolling, aggressive
Poise42%uneasy around otherssocially comfortable
Leadership30%stays in backgroundprefers to lead
Provocativeness38%modest, plays it safebold, uninhibited, cocky
Self-Disclosure42%private, containedvery open and revealing
Talkativeness42%quiet, stealthy, invisiblemotor mouth, loud
Group Attachment26%loves solitudeprefers to be with others
Understanding58%insensitive, schizoidrespectful, sympathetic
Warmth42%disinterested in otherssupportive, helpful
Morality42%break/ignore the rulesplay by the rules
Pleasantness42%aloof or disagreeablegets along with others
Empathy46%out of tune w/ othersin tune with others
Cooperation82%competitive, warlikeagreeable, peaceful
Sympathy70%socially inconsideratesocially conscious
Tenderness34%cold hearted, selfishwarm hearted, selfless
Nurturance34%self pleasing, me firstpeople pleasing, me last
Conscientiousness46%reckless, unscheduled careful, planner
Efficiency26%unreliable, lazyfinisher, follows through
Dutifulness30%leisurely, derelictstrict, rule abiding
Purposefulness30%inattentive, undisciplinedprepared, focused
Organization58%relaxed, obliviousdetail oriented, anal
Cautiousness42%impulsive, spendthriftrestrained, cautious
Rationality70%irrational, randomdirect, logical
Perfectionism42%careless, error pronedetail obsessed
Planning34%disorganized, randomscheduled, clean
Stability18%easily frustratedcalm, cool, unphased
Happiness38%unhappy, dissatisfiedself content, positive
Calmness30%touchy, volatileeven tempered, tolerant
Moderation50%needs instant gratificationeasily delays gratification
Toughness26%hypersensitive, moodythick skinned
Impulse Control46%lacks self controlmaintains composure
Imperturbability26%highly emotionalemotionally contained
Cool-headedness70%demanding, controllingaccommodating
Tranquility26%emotionally volatileemotionally neutral
Intellect90%instinctive, non-analyticalintellectual, analytical
Ingenuity78%lacks new ideasinnovative, novel
Reflection74%unreflective, coarseart and beauty lover
Competence78%slow to understand/thinkintellectual, brainy
Quickness90%intellectually dependentintellectually independent
Introspection82%not self reflectiveself searching
Creativity86%dull headedsynthesizer, iconoclast
Imagination66%practical, realisticdreamer, unrealistic
Depth78%lacks curiositymental explorer

Here's what I think was inaccurate:
Gregariouasness - I'm not extroverted or shy & reclusive, but I'm not in between either. There are, in my opinion, two types of introversion: a) low-level interacter and b) short-burst interacter. They are using a scale with the first type of introversion contrasted with extroversion. I'm the second type of introvert. I talk a lot and interact a lot when I'm around others, but have a strong need for non-interacting time. So basically my behavior alternates between extreme introvert and fairly extroverted, rarely in between. In my case it's probably because of the on/off nature of many things I do being extended to socializing.
Assertiveness - I have no idea why they think I'm not assertive. It seems like they're confusion cautiousness, assertiveness and need to control others, three separate traits. I'm very assertive, cautious, and not very interested in controlling others (except for my brother sometimes, when I'm overwhelmed).
Leadership - They seem to assume that since I'm not concerned with leading others, I stay in the background. Once again, they are ignoring the third pattern. There are not only leaders and followers, but also non-conformists.
Provocativeness - I don't try to cause trouble for the sake of trouble, but I don't try to avoid conflict either. I base my actions towards others mainly on whether I think it's the right thing to do, not on how they'll react.
Self-Disclosure - For some reason, it says I'm not high on this, even though I've been known to tell people I've just met that I'm autistic, a sexual abuse survivor, or both. Not sure why. Their definition of high self-disclosure sounds like it fits me. Perhaps me and the test had different ideas about what some question meant (kind of like the question "I talk too much". I said it was definately not true of me, because I'm fine with talking a lot, but they probably interpreted that as me not being talkative).
Cooperative - It scores me as high on this. I'm not competitive or warlike, but neither am I "agreeable and peaceful". It seems to be looking on a scale from highly competitive to highly cooperative, and I'm highly independent instead.
Tenderness - Why did it rate that low? I am very caring about the suffering of others. I try to calm my rat Anja down when she's scared by moving little letting her hide, being quiet and not making her the center of attention. Maybe they overgeneralized from my tendency to have little sympathy for people who think you should avoid telling them what you really believe in order to spare their feelings. This test is probably very inaccurate for most activists, because activism is usually a combination of being very empathetic and fighting for what you believe in.
Nurturance - Also inaccurate. I don't put myself ahead of others or others ahead of myself, but they took my saying it was "very innacurate" to describe myself as putting others ahead of myself to mean I put myself ahead of others. I believe I'm no better or worse than anyone else, although how I feel about my worth varies widely.
Efficiency - Why do they equate unreliable and lazy? Those are not the same. Lazy is one end of the extreme, unreliable represents variability. A person who is truly unreliable is lazy sometimes and very hard-working other times, like myself. In my case, it's because of differences in executive functions, the cognitive functions involved in planning and regulating thinking and activity.
Dutifulness - They have the same innacurate assumption I've described so often - considering two traits opposite and thinking everyone can be put on a spectrum of those traits when actually some people are different. I'm not leisurely, derelict, strict or rule-abiding. I think up my own rules to follow rather than automatically following society's rules. I think about whether the rules are correct, and only follow good rules.
Perfectionism - Yet another case of ignoring the third option. The book Strong-Willed Child or Dreamer describes my kind of perfectionism well. That is perfectionism that, rather than being characterized by focusing on details and doing it over again until it's perfect, assumes that either it will be perfect first try or I'll never be good at it and might as well give up now.
On the other hand, this test managed to pick up on my mood swings, creativity and 'need for cognition' alright. Of course, those are areas in which the standard way of having those traits isn't that far different from me.

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Friday, December 08, 2006

Planning for Support or Avoiding the Pain?

Quite awhile ago, I decided to write a post about the horrible Autism Every Day video. It was really upsetting me, but as long as I was watching and writing responses I barely noticed my feelings. Then we had to go, and I left it unfinished, planning to finish it shortly afterwards. As I posted soon after, though, I had a meltdown that night because of all the unhappiness I'd been pushing down.
This was in summertime. It's almost 2007 and the post I planned to finish at my next opportunity is not finished, and many other posts have been made. What happened? I decided to plan for emotional support. Thinking of that meant that every time I considered finishing that post, I'd anticipate how much it would upset me and put it off.
Recently, Amanda Baggs posted about a video by the Judge Rotenberg Center. I considered watching the video she discussed, but didn't have the time. Since then I've had time to recognize how much the JRC reminds me of my first school, only worse, and just how terrifying it is. They directly attack the ways I survived in my first school. I thought to myself 'they can't kill me' whenever I was heading for a big confrontation. I also knew I'd get sent home to understanding parents. The second is how that movie would trigger me.
Once, to my father's outrage, he was told they should treat me worse so I didn't want to get sent home. If I knew my parents would react to me describing how I'd hidden under a table to get away from my teachers and they'd dragged me out, hurting and terrifying me, by saying 'can you talk about something good about the school?' I have no idea how I'd survive. Running away, trying to kill parents/teachers, or pretending I can no longer see, hear or move come to mind. However, I might not be able to escape, and my dislike of hurting others means that killing someone is not something I'll do, and if I did get so desperate that I could bring myself from imagining killing someone to really killing someone, no doubt they'd be able to stop me. And as for the last, 'noncompliance' would be punished, and a punishment causing unbearable pain would be intolerable.
It's like acknowledging that something will hurt has given myself permission to avoid doing things that are important to me. I don't like this. We're home today, me and Mom, so I asked her if she could be there for me while I watch the rest of the Autism Every Day video. Mom told me she couldn't handle it today, but in a couple days she can.
I'm scared that I'll put it off again, that I won't be able to bring myself to do it. I'm worried that maybe Mom is really saying she doesn't care about me enough to put up with me needing support, and she'll put it off again (unreasonable, but try telling my emotions that). I really want to do this, but I'm scared.

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Thursday, December 07, 2006

Autistic Girls and Gender Stereotypes

My Mom just got this book about feminism, intended for teachers of women and gender studies, and told me I could read it. It had a section about disability, but I was dissapointed to find they were only talking about physical disabilities and body image. Pretty much every feminist analysis of disability is about physical disabilities and body image. So I thought about what I'd write about in terms of autistic girls and women.
The thing that came into mind was 'gender roles and gender identity'. So here's what I think about autistic girls and gender stereotypes:
Firstly, there are rules about what kinds of things boys and girls are interested in. Boys are supposed to be interested in war games and sports and so on, girls in 'playing house' and being beautiful and nurturing. Both transgender and autistic kids don't fit that, but in different ways. Transgender kids fit the general framework, they pick from the same list of standard interests, but they pick from the other side. A girl who likes transformers, like my brother's tomboy friend, or a boy who pretends to be a mommy. Autistic kids have interests that don't fit either gender. I heard of one autistic boy who was asked by some girls to play the daddy in a game of house. He decided he'd rather be the radio, and stood there reciting radio things. Gender roles underestimate the variety of things children can be interested in. Is pretending to be a radio a boy thing or a girl thing? Neither. It's an autistic thing.
Gender roles are also defined by disinterest. Boys aren't supposed to be interested in babies, girls aren't supposed to be interested in sports. Autistic girls may be thought of as boy-like because they aren't interested in girl things, while autistic boys are considered effeminate because they aren't interested in boy things. Once, I told a girl I was a tomboy, and she said I wasn't. I was thinking of the girl things I wasn't interested in, like my appearance, she was (I think) thinking of the boy things I wasn't interested in, like sports. Autistic teens are often thought of as gay because they aren't interested in the opposite gender, never mind that most of them aren't interested in the same gender either.
Autistic girls are more often thought of as boyish than autistic boys thought of as girlish, it seems. This is because there is a space in the gender roles for a male nerd. A smart, socially awkward boy is more typical than a smart, socially awkward girl, because boys are supposedly smarter and less socially skilled than girls. Math and science are supposed to be boy things to be good at, but they are also common autistic strengths. The 'mad scientist' is generally a man, I haven't seen many depictions of a female mad scientist. I've often indentified with the mad scientist stereotype, understanding the obsessiveness and delight at discovery ("It's alive! It's alive!") and dreaming of making my own monsters (which I wouldn't be scared of, unlike Frankenstein).
Lastly, autistics are less likely to absorb social norms (not that we don't - I've seen the same attitudes towards physically disabled or developmentally delayed people from both NTs and autistics) and autistic girls are often natural feminists, since gender roles are so illogical, especially if you're a girl with 'male' strengths.

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Wednesday, December 06, 2006

Recovering Racist

I've been rereading a book of mine, called White Girl. It's by Sylvia Olsen. In this book, a girl named Josie is living with her single mother. Both are white, and like many white people, don't think much about race. Then Josie's mother falls in love with Martin, an Indian (as he calls himself) from the nearby reservation. They get married and Josie and her mother move in with Martin. Josie, as the only white kid on the reservation, comes to understand a lot about race that she'd never thought about before.
One scene made me think. In this scene, Josie's Mom is talking to Josie's grandmother Mavis about her plans to marry Martin.

Mom had argued with Mavis about Indians on the phone, two weeks before the wedding. Mavis obviously had told Mom you couldn't mix oil and water. I imagined her voice: "It'll never work. And furthermore, you should think about Josie. The Indian reserve is no place for her."
"You're prejudiced," hollored Mom.
Of course Mavis must have denied it.
"What do you think?" Mom said in a controlled voice. "You think Indians are slinking around the corners of the reserve waiting to pounce on a little white girl?" (How was that for irony?)
I didn't hear Mavis's response, but it was what Mom said next that made me understand the trouble she was in now.
"Anyway, Mom," she had said, "Martin isn't wild and stupid and drunk like all the other Indians. He's different."

(The irony was that when Josie's new friend Rose asked Josie's Mom if they could go for a walk around the reserve, Josie's Mom was afraid of the same thing she accused Mavis of fearing.)
I thought about the irony of a racist calling another racist prejudiced. I realized that it's far more common for people to point out other people's prejudice than their own. Partly it may be that it's modeled more. It also may be that people simply don't realize they have a certain prejudiced view until they stop having it, that looking at your own prejudices makes them collapse.
I was thinking it would be good if people talked more about how to recognize when you are being discriminatory and change your own viewpoint and behavior. I once read about a group called Recovering Racists, who wear buttons announcing that they are Recovering Racists. Apparently this tends to get a lot of comments from non-white people.
Thinking about them, I decided to examine if I've been discriminatory towards disabled people recently. An example popped into my mind.
I volunteer with an activity program for disabled kids. It just ended for Christmas, but I'm planning to sign up again when it starts in spring. One boy in the program has severe CP, and can't sit up without help. He can't talk, but moans sometimes. I have repeatedly underestimated how much he understands, automatically slipping into viewing him as a 'vegetable'. I was surprised in the summer program when I overheard his mother saying he woke up really early on the first day because he knew this program was starting and was so excited, since I hadn't realized he enjoyed the program since he seemed unable to participate much. Just recently, on the last day of the fall program, he was moaning and the program coordinater commented that he was sad that it was ending. All the other kids were having fun, not thinking ahead to the fact that this was the last day, but this boy anticipated that he wouldn't be coming there next week and was upset. I need to learn to recognize that just because someone can't move much or talk doesn't mean they aren't aware.

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Tuesday, December 05, 2006

The Family I Want To Have

I tried to send this to Celebrating Autistic Parents, but it bounced. So I'm posting it here for now.

I love children, and have always planned on having children. Recently I realized I don't have to get married and have sex to have children, which is great since I'm not interested in sex. I'd like to either co-parent with someone else who wants sex and no children, or be a single parent. I'd like one child like me. I'm planning to go to a sperm bank and find the most autistic-like donor I can. If I'm lucky, I'll get an undiagnosed aspie, otherwise a BAP donor. Either way, the chance of the resulting child being autistic would be high.
Recently I heard on the radio about a lesbian couple having a child. When they were at the sperm bank, they got to listen to a tape of the sperm donor talking about his chosen topic. If I go to a sperm bank like that, I'll look for someone who picked an unusual topic and has odd tone of voice. I also heard about a sperm bank that only accepts high IQ donors. If that sperm bank gives data on subtest scores as well as overall IQ, I could pick someone who either has high verbal-low performance with low Comprehension and Arithmetic, or someone with high Block Design and low Comprehension.
I'm also planning to adopt a baby with Down Syndrome. There are many adoptive parents who specifically ask for a Down Syndrome child. If I can adopt a child with a rare developmental delay syndrome, that would be great too. I'd love to be a parent of a child with Angelman Syndrome or cri du chat syndrome. I will delight in my children's uniqueness. Even NTs are unique, and I'll love an NT child just as much as a disabled or gifted one. I'll raise all my children to value themselves and value diversity, and to be advocates against discrimination. My main method of teaching them this will be example.
But I worry about how good of a parent I'll be. Will I starve my children because of my tendency to forget meals? Will I be snappy at my children when overwhelmed, and hurt their feelings just like I hurt my brother's? Will my history of sexual abuse make it hard for me to cope with changing a little boy's diaper, the way it upset me to help a disabled boy get his pants on after swimming in the volunteering program I'm involved in?
I also worry about how society will react. Will a doctor call social services, or threaten to, in order to make me put my autistic child on medication or in ABA? Will I be hated for wanting to have a child like me? Will people treat my kids badly for being different, for having a parent who's different? If I have a kid who needs heart surgery or a respirator or something, will I be pressured to let my kid die? Will I be able to cope, and keep my kids safe and well despite discrimination?
When I think about it, I wonder how many NT parents-to-be worry the same way. Does a black person planning to have children worry about how they'll help their kids deal with racism? I suppose many of them think of how their parents helped them. If I think of my parents, they did a lot to help me. They fought with the school system for me. My mom got so angry on my behalf, she kicked a hole in the wall of our house once. My dad, who may be undiagnosed autistic, was once told that he should abuse me so that being sent home from school would be more of a punishment. He was rightfully outraged by that, and replied that they should make school less of a punishment so I'd want to stay there. They eventually homeschooled me starting in grade 7.
But they made some well-meaning mistakes. They took in my cousins, not knowing the danger they posed to me. They kept fighting with the school too long, keeping me in a bad situation because they didn't know their options. There was also minor stuff such as pressuring me to eat beets when the taste literally made me gag, and insisting that I finish all of a food I've tasted, even if I decided I don't like it. Since they found out about autism, they've listened to me more about my sensory sensitivities.
I think I can avoid making the same mistakes. But what mistakes will I make? How will they affect my child? Parenting is tough, but when you add a discriminatory society, ready to tear apart your children's self-esteem (including my NT child if I have one, because being related to someone who's different is discriminated against too), the consequences of well-meaning mistakes get more serious. There isn't the cushion of a supporting society, instead you have to fight society to raise your children well. And that's harder.
I think, I hope, my children will be better off for having an autistic parent. They'll learn firsthand that disabled people are real people and special as they are. The disabled ones will have a model of how to live as a self-respecting disabled person. If I have an NT child, they'll learn that they are not 'perfectly normal', just normal. But it will be a tricky job. Managing my needs and my children's needs in a society not designed for us, while fighting to keep society's attitudes from wounding my family and myself, will not be easy. But if I succeed, the result will be wonderful.

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