Labels and the Diagnosis of Self

Slow. Lazy. Shy. Daydreamer. Messy handwriting. Could do better if he tried. Top of the class…

How does an 8-year-old validate these apparently contradictory values? In 1981 there was no such thing as autism – not that a working-class family whose children went to a state school in the north east of England were aware of, anyway. Your children could be ‘difficult’, ‘naughty’, ‘backward’, or as was once suspected of me, require time in ‘Remedial’ class. I suppose this might be what would currently be thought of as educating disabled children in ‘mainstream’ school. I remember once for a period, every Wednesday, being removed from my usual year group in primary school and placed with a small group of younger children in front of a table and plastic tea set. It’s likely that this was the 1970’s version of SEND support, but in the end I was deemed too intelligent to need remedial education help and was sent back to my ‘normal’ class to resume being on ‘top table’, handing the pencils out…

In terms of labels, ‘autistic’ is infinitely better than any of those that I was handed but I am constantly reminded of a Stephen Shore quote, ‘If you’ve met one person with autism, you’ve met one person with autism.’ Using the frame of ‘Autistic’ is a neat way of attempting to describe the myriad of personality quirks and non-standard cognitive functions of millions of people. I think what has changed for me over the years is that I don’t see the use of ‘autism’ as a negative when directed towards me, or from me towards myself. For me it’s a bit like a Venn diagram. Yes, I’m autistic. I’m also a Star Wars fan, an historian, a classicist, an artist, a musician, a gardener and a whole list of other amazing things. Autism is my personal superpower that enables me to engage with all the other things in my life in a way that only I can. So yes, the non-neurodivergent community may choose to focus on autism as a way to put me in a box, but that box has dimensions that most normal folk can’t even begin to conceive.

My personal journey towards self-acceptance – and that’s what it is: acceptance – began about four and a half years ago when I met Emma, now wife-to-be. Emma was struggling with a combination of social services, Portage, and SEND support whilst trying to understand a 3-year-old little girl’s difficulties with interfacing with the world. Emilia is now almost the same age that I was when I became self-aware enough to question why I was so different, and alongside fully diagnosed autism, also suffers from quite pronounced learning and communication difficulties. We hit it off right away. She has the most gorgeous soul and is an absolute pleasure to be around – happy in her world. Today, she calls me Daddy and on difficult days I am the bridge between her and her mum. I just ‘get’ her. Becoming step-dad to someone who was in many ways more like me than members of my blood relation family really got me thinking about the difficulties that I had been through in the years since leaving school. Failed relationships, unhappy work situations, feeling isolated and often almost paranoid – these were all due to trying to be ‘normal’ and the people around me not having the label that they needed (and that I also needed) to help understand my quirks.

Now I’m not sure if this is a normal approach to dealing with your own autism, or maybe it’s a manifestation of my particular hyper-personalised pitch on the spectrum, but on reflection my way of living with autism has been to purposefully, directly and accurately submit myself to extreme aversion therapy in all areas that I have sensitivity. Where I have been slow, I have made a point of being the quickest witted – bullying at school meant I either had a fast retort to hand or fast feet. I was never lazy, I just didn’t see the value in the things that were being taught at me, most of which I had already digested from long hours in my walk-in closet with a Pears Cyclopedia and an Oxford English Dictionary. Shy? Maybe. Small talk was never a big priority so getting picked last for the teams in PE was a regularity. My response to this began in adolescence with deciding to be the frontman in a rock band; best place for a shy guy to hide out. Daydreamer; guilty as charged. As I was to discover thirty plus years later, visualisation is a scientifically proven preparation and performance enhancing technique. Dream on. As for messy handwriting, I still haven’t fully figured that one out. I remember spending my 13^th summer with an expensive notebook and a copy of Five on a Treasure Island copying it out in painstakingly perfect lower-case print. I’ve got lovely handwriting now. One of my more insightful teachers told my mother at a parents evening that they thought it was because my thoughts went faster than by hand could get them on paper; so I naturally took that as a compliment.

I crave familiar things. So to this end I took a job travelling solo to foreign countries where I knew little or none of the language and had no idea how to get to my destinations (all on public transport) and spent weeks on end in a different hotel room every night. Having said that, I did eat at McDonalds wherever there was one as I knew what I would be getting; and when I travel in the UK I will look for a PremierInn or a Travelodge even though I used to be a hotel manager and know the amazing potential of independent hotels and all the tricks to get a cheaper room. I hate not having an answer or not being the expert on something. This compulsion places me in the contrary situation of always being a learner. The day I handed in my final remote exam to the Open University, I signed up for a set of one-to-one French lessons to refresh and improve my fluency. It’s a strange kind of masochism. However, the pain for me of saying, ‘I don’t know’, is still too much to bear.

I’ve come to the acceptance that I will always be challenging; mostly to myself. I find new ways to make myself feel uncomfortable, even though I’ve kidded myself for forty odd years that my mission in life is to be at peace with the world and my place in it. Every day I am more assured and confident than I was the day before and realise something else about myself that barely registered when I was 8. But when one aspect is satisfied, another screams for my attention, reminding me that we are all, like all my gardens, a work in progress and that is the fun part: never being finished.

Adam Howells