In recognition of World Autism Awareness Week Christine, Education Programme Co-ordinator at MacIntyre No Limits, shares her battle to receive a formal diagnosis of autism, how this affected her and what it felt like to finally receive a diagnosis at 40 years old, during the COVID-19 pandemic.
Recently a post from Tumblr came across my social media feed. The author was musing on the process by which doctors and psychiatrists diagnose autism. "Why?" the writer asked, "are professionals so slow and cautious to diagnose when Melissa, Kelsey and Sophie from the third grade will look at you for 5 seconds, [and] simultaneously be like ‘this other small girl has something wrong with her'."
This offhand comment resonated sharply with me. I was that kid – the small girl with the odd interests and quaint way of speaking, who was perplexed by playground politics, who daydreamed and stared through people as though they weren’t there. The small girl became the teen who stuttered when called upon, drew fairies on her technical drawing assignments, was incapable of cutting the corners on the school paths, and who knew far too much about things no one else cared about.
In time the teen became the young adult, hyper-focusing her way through a degree, and graduating with an honours dissertation on the archaeology of railway stations. Yes, I know I’m weird.
I’d been out in the world of work for a year when my youngest brother received an autism diagnosis. I was twenty-four and struggling; I had moved to the other side of Australia to a city where I knew no one and I couldn’t make head or tail of office politics. I spent most weekends alone in my flat, chatting to friends on an internet message board about one of my special interests, the origin and usage of given names. Yes, I know I’m weird.
When I started reading about autism to understand my brother, it was like the cinema lights going up after a film has ended. Gradually all of my weirdness started to make sense. I was still the weird kid, but I was the weird kid for a reason. However, without a formal diagnosis, I had no right to ask for any accommodations from my workplace and pursuing one would have cost thousands of dollars.
Moving to the UK in 2010 gave me access to diagnosis through the NHS, but my first doctor in London spoke to me for three minutes, then refused to refer me. I knew that her judgement was meaningless, but it knocked the confidence out of me. I still knew I was autistic and still saw myself as deeply weird, but I was now frightened that I wasn’t 'autistic enough' to get a diagnosis, or that my ability to mask my weirdness around others was too advanced for a professional to see through it.
A new anxiety also popped up; what if I went through with the process and in the end, they told me I wasn’t autistic? I would be back to just being weird for no reason and the thought was unbearable.