On the life-changing nature of diagnosis

 |  Personal

It’s hard to know where to start this post.

Do I start it as a child where I knew I wasn’t quite the same as my peers? Do I start it as a new parent where things suddenly started to become apparent that I’d not noticed before? Do I start it at the point where hilarious internet memes stopped becoming funny and relatable and started becoming spookily, almost offensively relevant? Or do I start it in September when I had a meltdown and impulsively sent nearly £2,000 of my tax bill money to a private local autism diagnosis service because I was at breaking point, and knew something had to change before I hit rock bottom? (Again.)

A private assessment happens quite quickly, as it turns out. (I love the NHS but crikey, it’s not fast.) Within a day of payment, I had appointments for an ADI-R, ADOS-2 and final feedback – all within 6 weeks. The latter could have happened sooner, had I not been away in Liverpool. The appointments themselves were completed partly over video conferencing and partly in person, and by two different qualified professionals to national guidance i.e. as they would be done via the NHS.

I was concerned that, despite my issues in various areas, my learned ability to socialise and my high-energy chatting would make it more difficult for the assessors to uncover the more subtle symptoms I feel I carry. Both reassured me that there are plenty of people who receive an autism diagnosis regardless of where they sit “socially” on the spectrum.

And that brings us to the feedback, which I received morning of October 29th. It was agreed by the assessors that I met the diagnostic criteria for autism. Both also strongly recommend I get a separate ADHD assessment, which I can get either privately or via the NHS.

Hindsight is a wonderful thing, and if I sit here and think about it, I can give you stories as far back as my memory will take me on the ways in which I didn’t quite fit in. I can tell you of ‘behaviours’ that I’ve always done without a second thought, from the minor (cutting labels out of clothes, adjusting socks and tights so the seams don’t run across my toes) to the more dysfunctional (lack of understanding of social taboos including a proclivity for taking my clothes off in inappropriate situations). My very career stems from a teenage ‘special interest’ that saw me spending 16hrs+ a day at a computer soaking up as much info as I could process. I wouldn’t have to go very far back in my blog post history to point you towards things I’ve said which seem like reasonable truths to me but others take as offensive, harsh, or unnecessarily blunt. I have obsessions and issues that I mask and hide because it feels safer to do so. I struggle with scenarios that other people find easy. But that’s just my personality, right? We all have our foibles.

Apparently not so much.

I don’t feel the title of this post is hyperbolic. I already feel ‘different’ for knowing. The diagnosis isn’t a surprise, I have been fairly certain that I am autistic for some time. What is a surprise is how big of an impact hearing those words would have. To have years of questions and uncertainty validated and explained in a moment. I cried. I cried for the time I have lost to wondering, and I cried for the gains that I will make knowing who I am.

The possibility of ADHD is a bigger shock; it’s only something that entered my mind very recently. It makes sense, SO MUCH sense, but I think I need to come to terms with my first diagnosis before sticking another one on top. (I retain the right to change my mind on that.)

I won’t receive the written report for a few weeks or so, but the results are clear: I am autistic. And I’m OK with that.

Lead photo by Simon Maage. A sunrise seemed appropriate.

Jem Turner jem@jemjabella.co.uk +44(0)7521056376

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