The day before yesterday, Mum told me about her attempts to get me diagnosed in the past, and her thoughts on why they were unsuccessful (this comes as a result of me telling her about the GP who thought that I ‘wanted’ Asperger’s so that I’d fit in with my family).
So there’s me as a toddler, slow to speak and not interacting well with other children. Mum and Dad take me to a doctor, at one point autism is suggested. Mum’s thoughts on autism at the time (this is early 1990s) were either Rainman savants or people who got locked up in institutions, so she was reluctant. Still, they went to an autism specialist: by this point I’d gone to an osteopath and was on a strict diet regime, and was apparently playing relatively normally with my cousin. So Mum argued then that I was most likely normal, and a note went in my file to say that I was ‘eccentric’.
Time passes, and it’s noticed that I don’t initiate play successfully with children. I am, however, shown to be good at mimicry, so as a toddler I could play with someone else. When I started primary school, it was picked up that while I was getting fantastic grades, I had no friends, and was being bullied. Mum went to the teachers and asked them to speak to my classmates, so for a week I’d have friends until they grew tired of me. I played imaginary games, or would read during breaktimes. My parents still wondered if I had autism, but by now my brother had been diagnosed with severe autism, so that was their priority.
More time passes, and for some unknown reason (unknown to me, or my parents, or the doctors), I have a nervous breakdown when I’m 9. I get a lot better after 6 months on meds, and I see a psychologist four times. Again the issue of assessment is brought up, and I’m given tests and observed at school. While I performed too well in the tests to be considered ‘normal’, my teacher’s report and the observation from a day at school make me appear normal.
“Why?” I asked Mum at this point in the story. She explained her thoughts on this: the teacher had received advance notice that the psychologist would be coming, and for some reason during that week and the week before that, some girls miraculously took a shine to me and let me be their friend. Mum reckons that the teacher had told them to be nice to me, so when the psychologist came to observe me, she saw me being accepted by peers. “Why would he do that?” I asked. Her thoughts as a teacher were that since I was outperforming everyone else in the school, I brought up school ratings, so if I were diagnosed then there was the fear that I’d be moved to a different school, and they’d lose a good pupil. Mum said that she thought this likely, since that teacher tended to be a layabout who’d say that everything was fine (I was bullied for nearly two years everyday, he never said a thing until Mum went to see him) - he got sacked when I was 10, we’re not sure why.
Anyway, after that assessment, once I’m back to ‘normal’ after the breakdown I stop seeing the psychologist and stop taking meds, and a note goes on my file to say that I’m ‘borderline-autistic’.
I started at secondary school when I was 11, and I made a friend. By the end of that first year, we were a group of 4 friends. I still didn’t interact well with my classmates, but I wasn’t too weird either. By this point Mum had tried and failed to get me into social-skills classes (they insisted that she come with me since it’s a family activity, she insisted that she couldn’t since there was nobody else to care for my brother), so she gave me many lessons in maintaining eye contact, and appropriate topics of conversation, and telling white lies. At the end of the year, Mum’s called in to see the head of pastoral care, who’s noticed that I seem a bit ‘odd’ and stare very intensely at people. By this point, given that I have no diagnosis and Mum wants our issues to be kept behind closed doors, she gives the set answer: “She has an autistic brother, she must have picked up traits from him”.
I go through school, still feeling a bit strange and unable to click, but having friends. I found the reports from my assessment as a toddler when I was 14: that explained some things. I never told anyone else, since we were having some family troubles with my Dad and brother at the time. But from then on, I wondered if I was autistic. Reading books - fiction and non-fiction - introduced me to Asperger’s Syndrome, and I could identify with a lot of the feelings described in the books.
I finish school and start sixth form college, and then things finally start clicking into place. By the time I start university, I feel more comfortable in the world, and feel more able to interact with it. I go to university and instantly make friends - I’ve lost friendships too, but that’s a sad part of life. My friends are a mixed bunch, and we’re all accepting of each other for that.
Which leads me to the present day. 20 years old, wanting to find out where I fit into the world, and part of that, for me, involves learning why I sometimes don’t fit into the world. Getting assessed would help with that, I think. Plus this time there’s more knowledge and awareness of Asperger’s, less shame, and so much more acceptance. So maybe I’ll get a more unbiased assessment this time. And hopefully an accurate one that’ll make me feel more at one with myself (I am aware of how hippy-ish that sounds, but that’s the best way that I can currently think of phrasing it).
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