Recently, someone in an ASD Facebook group wondered what we thought about self-diagnosis. They wondered how much importance we placed on adults getting properly diagnosed by a professional. The post proved to be contentious, in a good way, with informed arguments originating from all sides of the debate.

I can only speak for myself, of course. I believe it has to start with self-diagnosis. In my case, I discovered I was autistic completely by accident.

I was researching some differentiated activities for my autistic students when I stumbled across a YouTube video about something called “hand flapping.” I watched it – and it suddenly hit me. I understood why I worked so well with autistic students. I understood behavior that puzzled me for decades. “Puzzled” is a good word, because it was my “missing piece of the puzzle” moment – clichéd, but true. It all made sense – I was autistic. But I didn’t base my
self-diagnosis on just one video.

Based on research, reflection and online surveys, I became certain I was autistic. For me, proper diagnosis was crucial. I’m very science minded and needed all the facts. I had to know for sure. In fact, I was advised not to seek accommodations at work, until I had my diagnosis.  My first step was to see my GP. I was disappointed and angry when he tried to discourage me from being assessed. He said it would take too long and the services in Kent weren’t very good. I didn’t care for his negativity. As far as I was concerned, he was trying to discourage me as a cost saving measure. However, I insisted. So, he asked me to write him a letter and include some of my online survey results. Then he’d refer me. I did so. It took awhile, but I was referred to the NHS for an evaluation. I was placed on a waiting list. From the time I saw my GP to the time I walked into my appointment with the NHS psychologist nearly a year had passed.

I believe my diagnosis will help, if I ever require special benefits in the future. However, I do understand the cost limitations some self-diagnosed autistics face. I was very fortunate that my diagnosis was covered by the NHS; took me a year to see a psychologist, but it was well worth it. While waiting, I did become anxious and sent a long, detailed application to the renowned Lorna Wing Centre. I was accepted for diagnosis, but the cost – over £2000! – was prohibitive; I chose to be patient and wait for the NHS. Patience is indeed a virtue!

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