Re-diagnosis: Starting Again

Content: professional diagnosis, self diagnosis, interaction with medical personnel

Writing this post in January, it feels like I should be throwing around some kind of Gregorian New Year greetings. I don’t really like that sort of thing very much, on the whole – I find this time of year really strange and difficult at the best of times. To put it mildly, this isn’t the best of times.

I hate the social pressure of the turning of the new Gregorian year, the intentions that all crash into each other on this one day and the sense of failure that usually starts creeping in when those intentions evaporate within a fortnight. But I am very much a fan of new starts, of setting out on new paths and adventures. Clean pages frighten and excite me, seeing the nothing from which something is about to grow, being there when the seed goes in the ground (literally or metaphorically, take your pick).

So it is with my autism. My official diagnosis, courtesy of a psychologist, happened in April 2013, nearly 8 years ago. It came on the back of 15 years of questioning by my mum and, at times, me, a huge mental breakdown, and the need to find some answers very quickly before something terrible happened. I didn’t manage to avoid all the terrible possibilities, but I did get my answers. Or so I thought.

On the one hand, I had a diagnosis for something I’d first identified when I was 10 years old written on a piece of paper I could brandish at those tasked with supporting me through the last bits of my degree. Useful, for sure, and for a long time I thought it was the be-all and end-all of my autistic status. But really, what more did I have? Most of the evidence that provided that piece of paper was things that my parents and I, along with half the rest of the people in my life, had already noticed. It was a formalisation of those observations put down in neutral, medical language, describing my life experiences as they were at the time. Reading the report, knowing what I do now, I find it mind-boggling how much is missing, how much I was masking, how many things I now do that I didn’t do then. Even accounting for the fact that I was, mentally, in a very, very depressed state, I do not recognise the person described in that report.

It is incredible to me that I was just given this diagnosis, got the letter in the post, and then was sent forth into the world with no ceremony or follow-up. My mum managed, with a lot of effort, to find someone to give me a post-diagnosis counselling session. This was great, but it was one appointment squeezed in because of a cancellation, and I remember almost nothing about it. As far as I was concerned, the professional diagnosis was the beginning and end of my autistic status. I did not know where to go to meet other autistic people, and I had no idea that an autistic community might even exist online. I felt almost as beached as I had before I knew I was autistic, only worse because the whole point of getting diagnosed had been to explain my feeling that way among neurotypicals.

Over the last year or two, I’ve been hanging out with increasingly more autistic people online, learning as I go, and realising that I knew almost nothing about being autistic when I was diagnosed. I’ve already written about rethinking my views about self diagnosis and where some of them came from, and I’m still embarrassed that it took me so long to come round. In the intervening months, I have begun to reconcile my diagnosis experience with the process of self diagnosis and to realise the gulf between the two. So much of self diagnosis comes out of community discussion and involvement, people coming together with their questions and coming away understanding themselves anew. The understanding I gained of myself with my professional diagnosis was worlds away from the deep understanding and security that a lot of my self-diagnosed pals have. Realising this unearthed a huge tranch of insecurity about myself and my identity as an autistic person.

Finding my people online after many, many false starts (not all Facebook groups are created equal, in this regard) has led to a process of re-diagnosing myself as autistic. My professional diagnosis was a piece of paper drawn up by a psychologist who, for all her kindness, qualifications, and expertise, clearly did not understand anything of the reality of being autistic. I have spent a lot of the last few years finding commonality with people online, and a few in person, about how my brain and body work, both (re)shaping my understanding of my autistic self and bringing me to the new realisation that I almost certainly have ADHD.

It feels a little self-indulgent to engage in this second process of diagnosis – I wonder to myself why one diagnosis is not enough, especially when it’s the one that is more widely perceived as valid and the fact that I have it at all is the product of, and confers on me, enormous privilege. But the more I learn about self diagnosis of autism, the more I realise that everyone who has been sold the idea of the professional diagnosis as the One True Way has been completely duped, including those who are lucky and privileged enough to have one.

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