Thursday, 30 April 2020

Diagnosis story

It was about four years ago, when I was aged 58, that my wife and daughter-in-law first suggested that I might be autistic. My daughter-in-law is a primary school teacher who is trained to recognise signs of autism.

I was really very sceptical. After all, I seemed to have none of the usual learning difficulties, my speech had developed normally, and my job meant that I was engaging in social interaction on a daily basis. How could I possibly be autistic?

(I should note that I have since figured out that I do have certain learning difficulties, my speech developed very well but in an unusual way, and my social interactions are all rule-based. I'll discuss all these in later posts).

Out of respect for their opinions, I started reading around the topic a bit. I read Steve Silberman's wonderful book Neurotribes and Tony Attwood's Complete Guide to Asperger's Syndrome, several other books and a lot of material online, especially the information provided by the National Autistic Society.

As I read, my scepticism faded away. Like many people, I had a rather limited and clich├ęd view of autism. But as I read through the catalogue of issues with social interaction, sensory challenges, activities and interests that add up to an autism diagnosis, it became obvious to me that I fitted the profile. The profound sense of difference I had always felt, the various struggles I have had every day of my life with people and with my senses, the obsessive nature of my interests which had led to my career as an academic, and many more things, were powerful indicators.

Somewhat nervously, I took various online tests, most notably the AQ test. To be sure of the results, I would put them away for a couple of months and then take them again. The results were unequivocal: I scored very highly in the 'autistic' range every time.

At this point, I identified as autistic. Now I began to wonder whether getting a diagnosis was a good idea. This was by no means certain. After all: I was now nearing 60 and had lived most of my life. What difference would it make to be diagnosed at this late stage? I sought advice from the NAS, who were very helpful. Without directly answering the question, they provided me with loads of relevant information and offered a listening ear.

After much hesitation, I eventually decided to go ahead. I am fortunate to be able to afford to have it done privately. I did not want to occupy a space in the queue for an NHS diagnosis. Autism diagnosis is a slow and difficult process, and I know that many people have to wait years. So, I went private.

The psychologists' questions were very clever. Similar questions were asked in many different ways and in an unpredictable order. This got through to the "inner me", the one that sits behind the mask. In fact, the mask is so well developed with me, that it is really impossible for me to take it off, so this was quite an achievement. In the end the diagnosis was swift and certain.

I was diagnosed with "autism spectrum disorder". I was informed that a few years ago the diagnosis would have been "Asperger's syndrome", but that nowadays we are not allowed to use that term.

Around this time, I also read Luke Beardon's fantastic book Autism and Asperger Syndrome in Adults which really made so much sense. Unusually for me, I spent a lot of time marking up passages in the book. Some of them described me so precisely it was really shocking!

Looking back two years later, I am very glad I got the diagnosis. It has led me to re-evaluate my whole life experience. I now understand how and why so many things have happened, my difficulties and struggles, my achievements and successes. I wish I'd been diagnosed at a younger age, but of course no such opportunities existed back then, except in particular cases.

If any adult who thinks they might be autistic is reading this, please do go through the same process as me. Get in touch if you like. A diagnosis does not suddenly make everything simple and of course it does not change the autism, but it is liberating and gives a depth of self-knowledge and awareness that is immensely valuable.