Tuesday, November 18, 2008

My Life Story

Awhile ago I posted about a discussion I had on a listserv, and alluded to a shift in how I perceived my own story as a result of presenting at the ARM conference. I said then that I should probably write a blog entry about it soon. Since the current Disability Blog Carnival topic is 'I Am' I thought I may as well do it now.
I'll start by telling my story.
I was one of those autistics who have no obvious delays in early childhood, and in fact usually seem gifted. I had normal to advanced milestones (either first words or first steps at 11 months, can't remember which), was happy and curious, and had intense interests (my first word was 'meowmie', meaning cat - it's my impression that babies whose first words aren't 'mama' or 'papa' often have intense interests) and a long attention span. I also slept through the night at only a few weeks old.
When I was 10 months old, my parents had my cousins (a 14 year old girl and her 11 year old brother) over for a visit for awhile, and while they were staying there, the girl told my parents that her father (my father's brother) was sexually abusing me. My parents told the authorities and were told not to take those kids home after the visit because they had custody now. So that's how my cousins came to live with us.
They were both very troubled kids. The boy would have rages and showed no remorse for his behavior, and lied and stole (once, he stole beer from the local store and was caught on videotape). The girl was manipulative and vindictive towards women and flirted with adult men, including my father. To give an example, she insisted on getting those gloves that you can pull the fingertips back to expose your hand - they were also very poorly insulated - and then claimed to her 'friends' that my parents refused to get her decent gloves. Obviously, both of them were hard to look after, and they made each other worse because of extreme sibling rivalry (apparently my uncle used to force them to abuse each other). Around 18 months or so, I became very quiet and withdrawn, although I'm not sure if I actually regressed. I did lose pre-walking skills when they first arrived.
My parents knew they had a lot of problems, but what they didn't realize was that both of them were sexually abusive. The older one ran away from home at 16 and my parents decided she was better off living on her own. The younger one, at the same age, sexually assaulted a classmate and she pressed charges. At that point, my parents realized he was a danger to me (I was also showing some behavior problems suggestive of abuse) so they sent him to another foster home. Shortly afterward, he confessed, and when the police interviewed me I revealed that both of them had abused me.
I actually don't remember any of this. With a few exceptions, all that I remember is from when I was at least 5 years old. I think I repressed those memories, although since J-Mac has a similar lack of early memory without any history of abuse it could be an autistic thing. Anyway, now we're getting to the part that I remember.
I had a good Kindergarten teacher, although I remember her pulling me out from underneath tables and such when I had a meltdown (I think it's a bad idea to do that - just wait for them to calm down and come out on their own). My grade 1 teacher, however, was the worst teacher I ever had. If you search for 'school trauma' on my blog you'll find a lot of stuff about her and the other teachers in that school, so I won't go into it very much here. One thing I will mention is that my teachers wanted me diagnosed with ADD (it was called ADD rather than ADHD back then) and given Ritalin. My parents kept getting me tested at their urging and every expert said I certainly did not meet criteria for ADD. As my mother said in her conference presentation 'we talked abuse and giftedness, they talked ADD and inherent pathology'. My parents also labeled me a dreamer, based on the book Strong-Willed Child or Dreamer?, but my teachers refused to read it.
My parents pulled me from that school halfway through grade 4 (my school had split-grade classes, and even grades were worse than odd grades for me because I couldn't listen in as the older kids were taught). In grade 5, I started in another school. Many autistics have observed that bullying tends to get really bad around that age range - and being a new student made it worse. My teacher there was very nice, but unfortunately, she was apparently too nice to punish bullies. I used to think of her really positively, but now I'm angry that she didn't do more to defend me from them. I keep thinking of the time that the vice principal was our substitute teacher - that day, the bullying was restricted to outside of class. I didn't like the vice principal, however, because when I had meltdowns he was often the one punishing me. It was at that school that I got sex education, which assumed everyone would be straight and resulted in me misainterpreting nonsexual liking for boys as crushes, and also a 'disability awareness' thing that sparked a brief obsession with disabilities resulting in me learning fingerspelling and the braille alphabet and wandering around with my eyes closed a lot.
I stayed at that school for grade 6 and a little bit of grade 7, then transferred to another school with an 'academically talented' program. My parents assumed that the academically talented program was for gifted kids - that's what they were told - but it was actually for teacher-pleasing hard workers with high-average intelligence. A highly creative, autistic, gifted kid who hated school really didn't fit in. The bullying was even worse there, and partway through grade 7 I was kicked out for 'attacking a teacher' (which apparently meant struggling when I was restrained to keep me from running away). While I was there, however, the principal suggested Asperger Syndrome as a diagnosis. My parents described the condition to me, without saying the name of it, and I said 'there's no such condition. If there was, I'd have it!' They didn't pursue that diagnosis any further, apparently because they felt it pathologized things they liked about me, like nonconformism and intense interests.
After I was kicked out, I started being homeschooled. Without doing any research on homeschooling, my parents figured out the method that fit me best, which I've since discovered is called unschooling. Basically, the child directs their own learning. In my case, I've always been an excellent researcher, so I just needed free time to research whatever I chose.
That's how I discovered autism. My mother has double majors in law and history, and her specialism is probably best summed up as 'feminist legal history'. I was obsessively interested in drugs and drug abuse, and my mother did a piece on how drug-abusing mothers and drug-exposed children are portrayed, focusing on a woman referred to as Ms G (a couple of articles about her here and here). She mentioned FAS in her piece, so I decided to research it. As I was researching FAS, I came across an 'online diary' news column by a mother of an autistic boy, and decided to look for more stuff like that. I found Temple Grandin's stuff and focused my interest on stuff written by autistic people, and found the neurodiversity movement. Right around that time, I started recognizing my own features in what I was reading, finding that I identified a lot with autistics, and gradually shifted in my view of myself as having trauma-related 'pseudo-autism', then being on the broader autistic phenotype, and lastly being possibly/probably autistic. I was at this last stage when my mother got a job in another town and we split into two households for awhile, and I went to grade 10 at a regular high school.
Being in school again brought up a pile of emotions, and I started having worse and more frequent flashbacks than I'd had before. It was that year that I thought up the concept of 'school trauma' to describe how I'd been affected by school, because I realized my reaction to bossy teachers and possible bullies (luckily, I wasn't bullied in grade 10) was exactly the same sort of thing as my reaction to revealing outfits, flirting, and unexpected touch. I had the same kind of terror of being called names or given an unreasonable school-type order as of someone trying to get me to do something sexual. My parents set me up with counseling, and during the intake examination (during which they asked a series of question which I correctly identified as the DSM-IV criteria for depression) I happened to mention that I thought I might be autistic. The leading psychologist there promptly told me I had PDD NOS.
The next year my mother's contract wasn't renewed, we went back home and I went back to homeschooling. I became even more of an activist and started getting involved in real-life activism as well as more internet activism. And then my mother and I did a conference presentation on the 'war on autism' at the Association for Research on Mothering conference, and at the end, she told my story. Afterwards, a woman came up to us and said that my life story was very similar to her own autistic son. Asperger Syndrome had been suggested as a diagnosis for him, as well, but she didn't think there was anything wrong with him, so she didn't get him evaluated. Instead, she just raised him to accept himself. When he was in his teens, he also discovered autism and self-diagnosed.
This is what made my viewpoint shift. There is a category of parents who don't seek out diagnosis for their mildly autistic kids, nor do they have the struggles assumed to be typical when a child is undiagnosed autistic. They just accept their kids. And their kids grow up with problems in school and with other kids, but always knowing that their parents love them as they are, and never fully internalizing the 'different = bad' ideology. Then they find out about autism and the neurodiversity movement, and self-identify as autistic. Their first view of themselves-as-autistics is a positive self-identification, similar to a gay person coming out, rather than a negative-other-identification.
I think kids, while growing up, should learn about all sorts of neurologies such as autism, not as disorders, but just as part of diversity. Our society should be flexible enough that an undiagnosed autistic can fit in and be accomodated just fine. And autism and other neurodivergences should be self-identifications, or things parents identify their children with to help understand them - like my parents did with the label 'dreamer'. We should take these differences out of the control of psychologists as 'gatekeepers' to our community.

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Blogger wrongshoes said...

So do you reject Asperger's as a possibility, or do you just not see a need to differentiate between HFA and Asperger's? Also, do you still consider trauma-related "pseudo-autism" as a possibility?

I felt pretty sure I had Asperger's until the other day when I had a moment of ease when interacting with some peers. I'm wondering if I had some kind of breakthrough, and I'm beginning to question whether my issues could be something more like trauma-related "pseudo-autism" instead.

7:52 PM  
Blogger Ettina said...

I don't think it makes much sense to distinguish AS from HFA, although if someone else finds such a distinction useful, I don't mind (as long as neither group is denigrated).
I don't think trauma-related pseudo autism, in the sense I thought I had, actually exists. In some cases, traumatized people, especially with attachment issues, have some traits similar to autistics - which I suspect is because many autistics, due to mismatch between the environment and their own personalities, grow up in similar kinds of circumstances as the situations that causes attachment problems in NTs, and the resulting features are assumed to be part of autism. The idea for this came from:

3:06 PM  
Blogger Oktarin said...

I especially liked this :

"Our society should be flexible enough that an undiagnosed autistic can fit in and be accomodated just fine. "

I think it is also true for any neurodivergence, any atypical way of being. Students shouldn't need to provide diagnoses in order to get accomodations. I frequently hear people talking about "adapting school for disabled children", but I understand that they mean "chlidren who are diagnosed disabled". This is silly because we certainly will never discover all the neurodivergences that can be disabling in the current school system and in society in general. So yes, just as you say, we need a more flexible school, not just a school adapted to those labeled « disabled » by psychologists and doctors.

I really liked your article and thank you for writing « Abnormaldiversity », you make me think, wonder, imagine... =)

By the way, does your username « Ettina » refers to the Ettins in the game « Creatures » ?

(* Big fan of Creatures here * )

P-S : My comment may sound a bit weird. I am French, and english is not my mother tongue, so, sometimes my sentences are a bit “French-like”. Be indulgent, please. If I have made mistakes or haven’t been clear enough tell me, I will be grateful.

12:20 PM  
Blogger Ettina said...

Yes, it does. My very first ettin was named that, and I loved her so much that I borrowed her name for myself.

2:06 PM  

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