A Martian in the Closet
The response to my earlier post - 'Gift: A Son's Story' - about growing up with undiagnosed autism has prompted me to post this. I started to write a book on the subject, but didn't get very far. This is the Prologue. It probably says all I really needed to say.
On 19th May 2015 - a week after my 56th birthday - I received a letter that changed my life.
No... it wasn't a notification to say I'd won £10 million on the Lotto. Nor was it an invitation for a date with someone who would turn out to be the woman of my dreams (the Lotto win would have been more likely!) It was something far more important to me than either of these. It was, in essence, the key to my entire life.
It was my autism diagnosis.
I'd had the diagnostic interview a few weeks earlier. At the time of referral - just over two years before that - I was in no doubt. But it was still something that existed in my head (no joke intended). Now I had it on paper, too. It was officially confirmed.
I was autistic.
Always had been.
Always would be.
How can I describe how that made me feel?
Perhaps you could compare it to finally discovering a secret that's been kept from you for your whole life. Imagine, for instance, finding out one day that the name you've been known by all your life isn't your birth name at all, but something entirely different. William instead of Gary. Susan instead of Linda. A big thing for you, most likely. But then... it's just a name. A word. Does it make that much difference what anyone calls you? What you call yourself? It doesn't change you in any way. Not fundamentally. It doesn't explain anything to you about why your life has taken the course it has.
That was what my autism diagnosis did for me. Finally... it explained my life. I felt like I'd had a Turing machine running in my head for years and years - since way back when I was at primary school, when my difficulties first started to become evident. And now suddenly, half a century on, all the tumblers had fallen into place and the code was broken. I now had the answers. I could look back on my life, and at last make connections. The things I'd struggled with, and which I'd learned to accept as being down to ineptitude, incompetence, dreaminess, shyness... even just plain stupidity. It all now made sense.
So it was like the revelation of a life-long secret. A secret inside my head - but one that had been kept from me, too. I didn't know it was there. But I knew something wasn't right. Or, at least, that something was different.
Why couldn't I make friends when others seemed to find it easy?
Why, if I did manage to make friends with someone, did that friendship never last?
Why were all my attempts at romantic relationships always abject failures?
Why could I never seem to control my emotions, and panic over things that other people took in their stride?
Why did I prefer my own company, when humans are supposed to be naturally social animals?
Why was I a dunce at school, even though (as I found out later) I had a Mensa-level IQ?
How, if I was such a dunce, could I go on to obtain a degree in my 30s? And how could the level of my degree (2:1) put me on a par with people much younger than myself, who'd had glittering careers at school - and more recently?
None of it made any sense to me. It had all caused me much grief, anxiety, depression and soul-searching. I'd tried all my life to be like others, and had always failed. I felt like an alien - like I'd been put on the wrong planet.
A Martian - on Earth!
In my 30s, this life - this prevailing sense I had of detachment and displacement - began to catch up with me. I suffered depressions and anxiety attacks for the first time. There seemed to be no real reason for these things, though. I was told, by my doctor, that it was what was called endogenous depression - a disturbance of thought processes, with no external life causes. I was given anti-depressants and sent for counselling, and courses of CBT. I tried stopping drinking (I didn't drink much, anyway). I tried meditation. But still I felt no better. If anything, the failure of these things made it worse. I felt more alienated, outcast and misunderstood than ever. I was told by others to pull myself together, 'man up', get a grip... look on the bright side. Countless times, I'd been referred to my community mental health service. Countless times, I was turned away - like I was a time-waster. A malingerer.
And then, in my early 50s - 2010 to be precise - my machine finally stopped. I had a colossal, suicidal breakdown. I was lucky to survive it. It was a terrible time, and I was unable to work for a couple of years. But there was a silver lining. This was to be the catalyst for change.
During my recovery, I saw a therapist who started to dig a little deeper with me. We discussed all the usual things: childhood, school, behaviours, relationships with others. For the first time, I talked about some obsessions I'd had as a young child. How things needed to be ordered a certain way in my room. How I couldn't go to sleep at night unless my pillow was in the dead centre at the head of my bed (I would measure the gap between each side of the pillow and the edge of the mattress, and make continual adjustments until I was satisfied that the pillow was exactly right). How I had to line up all of my toys in a particular order and kiss them three times each, plus one for luck, before I could get into bed in the first place. How I preferred playing games (including board games) with myself rather than with others. How I preferred doing most things alone rather than with others. How I was a precocious reader, and way ahead of the others in my first year at primary school (the only year, in my entire schooling, that I was ever ahead). How, at 11, I'd devised a series of codes and symbols to categorise my books, and how I shelved them in strict order of content, then size. How I was obsessive about a few interests (snooker, ghost stories and Sherlock Holmes) and had little interest in anything else. How I used to spend ages standing at the bathroom door, turning the taps and the light switch on and off, so that I could properly establish the 'off' conditions and be satisfied enough to shut the door and leave it.
Then I told her about how later, in my teens, I became obsessively tidy - to the point where I had to clean the bathroom from top to bottom after my father (an untidy man) had been in there. How I once spent an entire weekend sorting out his workshop, so that everything was in its place (all nails and screws ordered by size, and all tools clean and packed neatly away) only for him to mess it all up again, to my great distress. How I would hate using my motorcycle in wet weather, because it would spoil it - so I'd have to waste time later on cleaning it (the time-wasting was the biggest issue for me). How, when I shared cashiering duties at a shop where I worked, I would need to go in early and tidy everything after the previous user had been in there. How I didn't like anyone else getting in my car, and would have to clean it out afterwards if I'd given someone a lift. How I hated being asked to do overtime at work, because of the disruption it caused to my routines. How I was hyper-sensitive to noise, and to any form of negative criticism (traits that remain with me to this day). These things all made me seem - and got me called - fussy and fastidious. For many years, up into my 20s, I had a strong sense that people were saying something behind my back. Something very specific.
"He's a strange lad!"
Later still came my accounts of difficulties making friends, failures with relationships, increasing preference for being alone, my needs for order and routine (extending to only ever wanting 9-to-5 jobs, without overtime), and my anxieties surrounding change or social contact of any sort. She'd already noted my meticulous way of describing things, my extreme discomfort with eye contact... and, quite probably, my self-absorption.
Finally one day, she asked me if I'd ever thought that I might be on the autistic spectrum. By this time, I'd spent some years working with autistic people in special needs care. I'd observed some behaviour traits - particularly regarding routines and rituals - that I'd instinctively thought were quite 'normal' and understandable, whereas other staff I'd been working with had disagreed. But I didn't think I was autistic. Not in a million years. I was a functioning adult. I'd always worked. I could drive a car. I managed a home budget (very meticulously, I might add!). I had a degree. I had abilities. I could cook, and sew, and plant a garden, and do my own shopping, and play the piano (however badly), and work a computer. I'd written poems and stories over the years, some of which had won prizes. I'd also written and published a novel. Surely, these weren't things that autistic people could do, were they? Later, through an online depression forum I used, I'd gotten to know some people who functioned like myself, but who identified as autistic. Aspies, they called themselves - after the Asperger's Syndrome they said they'd been diagnosed with. 'High-functioning' autism, as it was known - generally with people who had no co-morbid learning disabilities. After communicating with these people, I'd certainly begun to wonder more about it. But I still wasn't sure it applied to me....
...until my therapist brought it up.
"Have you ever thought that autism might be at the heart of your problems? Because what you've told me about your life leads me to believe that it could be a possibility, and might be worth investigating."
On her recommendation, I took the standard AQ (Autism Quotient) test online. Fifty statements, with four options of agreement or disagreement for each. Things like
'I find social situations easy' (definitely disagree)
'I prefer to do things with others rather than on my own' (definitely disagree)
'I would rather go to a library than a party' (definitely agree)
'I find it hard to make new friends' (definitely agree)
'I know how to tell if someone listening to me is getting bored' (definitely disagree).
As I worked my way through the statements, it felt like a light was going on in my head. They seemed to be touching on things - preferences, habits, behaviours - with which I felt a strong affinity. The test introduction mentioned that most neurotypical (i.e. non-autistic) people would score less than 20 out of 50. 30 and above was more strongly indicative, with 32 meaning that autism was highly likely.
I scored 42. Not just over the pass-mark, but way over it. That convinced me at last.
My therapist wrote to my doctor, who again referred me to mental health services. I saw a psychiatrist there. I told him my story. I told him about my test score. He looked at me and shook his head.
"If you were autistic," he said, "you wouldn't be able to sit as still as you are. You'd be moving about the room. You'd be flapping your hands."
Once again, I was sent away - feeling completely defeated now. My therapist was outraged when I told her. She wrote to my doctor again - this time insisting on a direct referral to the county autism unit.
I waited almost two years for that final appointment. Throughout that time, though - in spite of what that psychiatrist had said - I was in no doubt. From the moment I finished that test and saw my result, I knew what my secret was.
And now I had the letter that proved it. I had vindication at last.
I wasn't stupid or gullible. I wasn't anti-social. I wasn't fussy or over-sensitive. I wasn't untrustworthy. I wasn't incapable of learning. I wasn't emotionally-deficient.
I was differently-wired. Neurodiverse, not neurotypical. A cat in a world of dogs. A Linux OS in a world of Windows. A bike in a world of boats. I did everything I needed to - but differently.
All I had to do now was to get the world to accept me for it.
It's an ongoing project
It never ends...
Picture credit: my own work