This article is the first in a mini-series explaining the diagnostic process for adults with Asperger’s Syndrome. It’s written from the point of view of an adult with Asperger’s Syndrome. Okay… an almost adult. Fine… a twenty something who watches way too much Pokémon and generally does her best to avoid any responsibility. Part One is an autobiographical account of my childhood, and the events that led to me being assessed for Asperger’s Syndrome. Part Two explains the assessment process in as much detail as I can recall, and Part Three covers what happens after diagnosis.
The diagnostic process is something I’ve been asked to write about for a while. I was reluctant to do so at first. Mostly because I was diagnosed with Asperger’s for the first time when I was six years old, and have almost no memory of this experience. When I discussed my childhood with my parents, it became clear this was a difficult time for them. My father was reluctant to “label” me. However, my school had made it pretty clear that without an official diagnosis, they couldn’t provide me with additional support (something I clearly needed). My mother would fight tooth and claw to get me this support, but didn’t want to consider the idea that there might be something “wrong” with her daughter. She described me as a quiet, happy individual, who often played by myself at the edge of a crowd, rather than being in the centre of a big group of children.
As for me… I remember having lots of friends as a child. But looking back, they were mostly my cousins, the children of family friends or kids from school who’d decided to make befriending the weird girl their latest altruistic project. When I was around six or seven, I invited a friend from school back to my house, and she said yes. On the way home, I remember biting her (I think that we were playing tigers) and feeling shocked and confused when I realized she was in pain. It occurred to me then that I might be different from other people may age.
My clumsiness, my determination to remain in water until my lips turned blue and various other sensory differences became apparent way before my struggle to socialise did. My Dad often recalls how, when I was a baby, he sat me down on a beach and got ready to relax in the sun. It was safe. As long as he kept one eye on me, there was nothing I could do to hurt myself. Right? Wrong. I started to eat the sand. After the first couple of mouthfuls, most children would realize they didn’t like the taste. But I just kept on eating, shovelling handful after handful of the stuff into my mouth until Mum and Dad had to abandon their relaxing afternoon in the sun and remove me from the beach.
As I said, I don’t remember my initial assessment for autism. I do remember becoming closed down every time someone mentioned “the a word”, and, as I grew older, hating my teachers for treating my differently. I couldn’t stand the way they always spoke softly, forced me to look them in the eye and explained everything to me twice, even if I’d told them I understood it the first time. This just caused me to withdraw even further, not admitting to the problems I did have, because I couldn’t stand the idea of being pitied. I wanted to be like everyone else… ignored by teachers, invisible in a crowd and always ready to joke about the class weirdo. Unfortunately, the class weirdo was me. And unless teachers stopped treating me differently, unless I stopped being so… Gwen, that was never going to change.
When I went to university, things improved for a while. I had a learning facilitator who addressed me like I was a normal human. She didn’t adopt a high, lilting voice when I was around, didn’t force me to initiate eye contact, and when she smiled at me, it was a real smile, not a condescending one. Perhaps most importantly, she asked me what I needed help with, rather than deciding for me. I was still the class wierdo. But I had more confidence, and was now able to make small talk with my peers. Most importantly, I’d gone from struggling to achieve Bs and Cs at A Level, to managing to achieve a 1st at degree level. I couldn’t have done this without the Inclusion Team, who were willing to help me any way they could, and didn’t see having a disabled student as a burden.
However, I still had a lot of issues. As I pushed myself more and more to achieve higher grades, my mental health worsened, and the shit hit the fan. After a brief trip to hospital, I was sent home to recuperate from my breakdown. It became clear to my family that although I’d spent most of my childhood longing to be free of the “help” offered by my school teachers, I still needed a high level of support in order to live. This support would have to be autism friendly, taking into account my difficulty communicating, my sensory differences and my mental health issues. Unfortunately, there are a lot of hoops that disabled adults must jump though in order to be considered eligible for the support they desperately need. For me, the first was an adult assessment for autism.
Part Two of “Being Diagnosed With Asperger’s Syndrome” will be posted next week. Any questions? Just comment below or email me at firstname.lastname@example.org