Who would live in a brain like this?

'Coming out' after a year of neurological navel-gazing

So here’s some news: around this time last year, after an evaluation process that lasted about eighteen months, I was officially diagnosed as autistic.

Autism, as I understand it, is a difference in the fundamental “wiring” of the brain that causes those who have the condition to experience the world differently to those who don’t. (That’s my simple “back of napkin” definition, but I’ve not been contradicted so far.) There is such a thing as an “autism spectrum”, but it’s not a straight line, and is best visualised as a colour wheel, radar chart or (better still) pizza, with each slice representing an area of neurological divergence – for example, language, sensory, motor, social, cognitive – and each slice eaten to a different extent for each autistic person.

As a full-time, life-long glasses-wearer, the diagnosis has been like receiving a whole extra pair of glasses that fit over the top of my current ones, which have helped me to see myself and the world far more clearly than I did before. As a result, I’ll need to occasionally refer to my autism in future posts, and it felt necessary to make a proper “announcement” instead of just casually sneaking the information into an article on paper choices for printing poetry, or “this season’s hottest fonts”.

Over the past year, I’ve shared my diagnosis only with a dozen-or-so close friends and family. Their reaction has either been:

Yes, I’d always assumed you were autistic. It’s obvious.

or a polite version of:

What nonsense! They’re giving out diagnoses to anyone these days.

… but never anything in the middle, which was a surprise. I should note there was no correlation between how much the individual giving the response loved or supported me and their answer. They were pretty much split 50/50, and on reflection, the difference broadly came down to the amount of experience they had in this area. Those with an autistic family member or close friend went for “yes of course”, those whose experience had been half-watching Channel 4 documentaries – or sharing a classroom with someone who needed one-to-one support during lessons, but could recite the entire closing credits of Star Wars on request – met the news with disbelief. Jamie can’t be autistic; he runs a publishing house, for goodness’ sake!

All they needed, of course, was a little education, and that’s another reason why I’m writing this post. The “what nonsense” people were correct in thinking that diagnoses of autism are broadly on the rise, but this is a positive development, and is due in no small part to the work of public figures (one of whom we’ll meet later) raising awareness of the condition and what it’s really like. Being a minor public figure myself, with a couple of thousand readers (hi folks!), I’ve become more and more convinced that I have a responsibility to do my part for the cause. So, read on for the full story of how I found my “new pair of glasses”.

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The process of being diagnosed started with a casual aside to my GP in 2020. Talking over the phone on another matter, I mentioned how I’d done a few online tests and a lot of reading, and had come to suspect that I might be autistic. On the spot, he gave me a quiz just like the ones on Google (but with only ten or so questions), then said: “Well, looks like you do have it! I’ll put you in for a proper diagnosis.” It was literally as easy as that. What a world it would be if everyone could have such straightforward, free access to the healthcare they need, when they need it – or in this case, when they are mildly curious about it.

There was a waiting list, of course, but six months later I started talking to psychologists at a place called The Retreat in York (over video chat, as it was still 2021). There were various meetings over the following year, the first aimed at reaching an answer of “no” or “maybe” (it was the latter), and others seemingly just to update me on their progress. Everyone I spoke to was friendly and patient. The longest and most important session involved activities like narrating a children’s book without words, describing what people were doing in a series of images, and improvising a story involving a teaspoon, sheet of paper, cup, glass, clothes hanger, piece of string, pen, pencil and comb (I was asked to have all items on standby).

To be honest, I thought I absolutely nailed these tasks, and we were heading for a verdict of “false alarm”. However, between each activity we took a short break, during which the psychologist made attempts at small talk – and it turned out those break-time chats were weighted more than the tasks in the final analysis. As a deeply-trusting man, I hadn’t suspected that for a minute, but my naivety was probably for the best. If I’d known, I might have tried extra hard to make decent conversation. (Perhaps I shouldn’t have revealed this trick/technique here at all – try to forget about what I’ve just said, if you ever go through a similar process!)

At what turned out to be the final session, in late summer 2022, I didn’t know if the decision had been made or not – but they started the meeting by saying: “So, you are autistic, and it wasn’t even close.” (Those exact words.) “Oh!” I said, caught off guard. “Okay. Thank you.” I then thought, What a treat it is to have a conversation where nothing is left up to interpretation, and then, Hang on, that’s an autistic thought! It’s all true! “Do you have any questions for me?” they asked, but I could not think of a single one.

Later, they sent me an eighteen-page document labelled “Autism Assessment Report”, describing everything I’d done over the past year that had led them to their conclusion. I have not shared this report with a single other human being, and do not intend to. If you don’t stay mindful of its purpose, this file can easily read like an utterly damning school report examining your entire personality, and focusing only on what’s “wrong” – after eight pages I was laughing out loud at the sheer relentlessness. By the end, I was wondering how I’d ever make it out of the door again. Perhaps I should become a hermit?

Of course, in the following weeks, I thought of a hundred questions I should have asked at the last meeting – but help soon arrived, from a not-entirely-unexpected source. I’d reached out to poet, radio presenter and autism ambassador Kate Fox (also, technically, a Valley Press author thanks to this ancient ebook), who pretty much immediately gave me an hour of her time over Zoom, and allowed me to throw questions about my new identity at her non-stop. I cannot sufficiently express my gratitude to Kate for this session, although (as mentioned above) it didn’t really come as a surprise – Kate’s generosity, kindness and wisdom have always shone through in every project she does. If you ever get a chance to hear a show or buy a book by Kate, please do so immediately; you won’t regret it. (Judging from her current headshot, she seems to be living naked in a bush, so perhaps needs your support.)

Here are some things Kate taught me:

• Autism is a disability, and counts as such in many official circumstances, though it’s usually better to say “neurodivergent”. Although the acronym ASD (Autism Spectrum Disorder) is widely used in the medical community, many autistic people take issue with the latter word.

• It’s a disability because there are far more non-autistic (allistic) brains than autistic ones. We are thought to make up only 3% of the general population – though who’s to say which way of wiring up the brain is really “correct”? (As a side note, we worked out that 8% of Valley Press authors have been officially diagnosed as autistic; make of that what you will!)

• It is better to say “I am autistic” rather than “I have autism” because autism is such a fundamental part of how we process the world. It’s not a disease; autism is me, and vice versa, to some extent.

• Many people find it helpful to be open about their autism. (I then pondered that concept for 11 months before writing this – better late than never!)

• There is an autistic community to find, particularly via the Autscape conference (which I wasn’t quite ready for this year).

• “Spoon theory”, popularised by the chronic illness community, can apply to autistic people too. Kate also suggested the metaphor of making withdrawals and deposits from an energy bank account, which I’ve found very useful; if you keep making withdrawals without being mindful of the balance, you’ll run out, and a sort of “shutdown” can ensue. A deposit for me might be sitting on the settee and listening to music (as illustrated above; pizza optional), while a withdrawal would be an intense social event like a book launch (which is not to say I don't enjoy those, in moderation).

Later, I learned about “masking”, a term for acting neurotypical when you aren’t, which can be a huge drain on the “energy bank account” for autistics – many of whom do this subconsciously. Although autism is not a progressive condition, it can appear that way for some people (including me), as the ability to effectively “mask” naturally diminishes along with your energy levels as the years go by. But this is not a depressing thought: it just means I am becoming increasingly true to myself, this blog being one manifestation of that.

Following my diagnosis, I began to consider how I could improve my working life by being mindful of my condition: for example, how about less managing people and more direct, detail-orientated publishing work? Of course, having tempted fate in this way, I was back running Valley Press as a “one-man band” by Christmas, but at least with a new mantra: to approach publishing “on my own terms”. How exactly I go about that is likely to be the subject of a future blog post, which would also be a good time to discuss some of my specific “symptoms” (which I’m not quite ready for today). (Note: I ended up discussing my symptoms in a “sequel” to this post the following week, which you can find here.)

For now, thank you for reading this story to the end, and for your continuing support. Me and my brain will see you soon!