Thursday, 30 April 2020

Disclosure

The question of whether and how to disclose your autism is one of the most challenging things that follows a diagnosis.

Various issues play on one's mind, such as:

  • Will it change the way people perceive me?
  • Will it change the way I perceive people?
  • What difference does it make?

The answers to these, in order, are: a) yes, b) yes, and c) a great difference!

At first, I was very cautious about disclosing. I thought it was best only to talk to a few friends or family members. But it soon became obvious that I would have to disclose at work too, both because I now recognised certain adjustments that could be made to improve my work environment, and because I was being encouraged (by my GP and others) to 'champion' autism.

My general policy is to disclose only when I am convinced it is a good idea. I don't go around introducing myself to people as autistic. But the number of occasions on which it seems to be a good idea is steadily increasing.

I often have to contend with a disbelieving reaction. This is very tiring. More than one person has said, incredulously, "but you are very high-functioning!" I usually reply: "but you've never seen trying to go through an airport - I'm not at all high-functioning then". The high/low-functioning distinction really makes no sense. We can function well in some situations but not at all in others. Usually it is the environment that creates the problem. Why is that so hard to understand?

I'm afraid I have seen some people's view of me change. Often they remain politely interested on the surface, but back away. I guess either they don't believe it and would rather not say so to my face, or they do believe it and are suddenly wary.

At the same time, my perception of others has changed too, because I now understand the way in which I structure relationships. What I fondly imagined was a natural, organic relationship turns out (through not fault of theirs) to have been much more driven by my autistic needs than I realised.

The best reactions to my disclosure have come from some close friends and family, and from my line manager and certain colleagues at the university. I am very pleased to be able to say that, because I often hear people complain about how disclosure at work (especially in academia) can go badly. My line manager was great: very matter of fact and immediately offered to make reasonable adjustments that were furthermore quickly implemented. Result: a much more comfortable work environment for me!

The worst reactions I have received were from medical colleagues (not my GP) and acquaintances, and I will devote a separate blog post to those. Suffice to say that the medical model/social model distinction is very real, and quite shocking.

For me, then, disclosure has been a mixed blessing, but this blog is evidence that I am now committed to that path. I feel it is a duty for people like me to disclose. As Chris Packham has demonstrated it is important for academics, especially senior academics, to address their autism in public to some extent. Many others stand to benefit from people like me speaking out, so that is what I will do.

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.

Autism Identification

  • What does it mean to be identified as autistic late in life?
  • How does it change your understanding of your past?
  • What does it mean for the future?

This is a blog written for people who have identified as autistic later in life (in my case, aged 60). So much of what is written about autism concerns children. But all those children grow into adults. I am an example of autistic life lived unawares. There are thousands of people like me.

Late identification or diagnosis changes your perceptions of your lived experience. That profound sense of difference which was always present but had to be ignored, or suppressed, or overcome, is now validated. Suddenly, life makes sense in a way that is both liberating and transformative. Past events shift into a different focus. The present and the future become charged with a new meaning. But this profound change brings challenges too.

This is the beginning of a blog that will reflect on themes and ideas that seem important to me. Remember, though: "when you've met one autistic person, you've met one autistic person". I do not speak for all autistic people. I can only talk about myself and pick out things that seem to have a wider relevance.

I am a successful academic who is also autistic. I am most certainly not the only autistic Professor. I personally know two others who have had an adult diagnosis. I know several more who self-identify. I believe that autism is more common in academia than people realise.

I am also not a Professor of Autism. My research areas have been Music and Computing. These are in fact 'special interests' and I have been fortunate to be able to overthink them for a living. I am interested in autism research, for sure, but I am not an expert.

So, this first post is just a way of introducing the blog and myself. The next step is to recount the story of my late diagnosis...