9 to 5

Work is clearly an issue for many Aspies. Often, even finding a job at all can be a struggle. Then staying in one – and getting employers to adjust to our needs. Finding something congenial to our condition, too, is never easy. According to figures from the National Autistic Society, only 16% of autistic adults in the UK are in full-time paid employment, and only 32% are in some kind of paid work (The Autism Employment Gap, 2016).

When I look back over my working life, I suppose I’ve been relatively fortunate compared to some. I started work after leaving school at 16 and have generally been in employment, of some form or other, ever since. That’s over 40 years. I took 3 years out to do a degree in my late 20s, but got straight back into work afterwards. I’ve had some short periods of unemployment, usually following redundancies. I also took a year out to care for my mother full-time during her final illness, and then to recover after her death. I still haven’t fully recovered, 18 months on. I doubt I ever will. She was my closest-living human being. Her loss is huge. I feel alone without her. But I have my dear cat, Daisy, here with me. She keeps me going. I’m moving forwards, slowly.

I’ve also had a fair bit of time away from work due to ill-health. About 3 years, if I add it all up. All of it has been mental health-related, and the majority of it has been during the last 12 years. I’ve no doubt that it has all been connected to my then-undiagnosed autism (I got my diagnosis 3 years ago, at age 56). I have no doubt, too, that much of it has been caused by work-related issues. Stress, bullying… and general difficulty with having to be with other people for a good part of my day: people I wouldn’t otherwise have chosen to be with.

All in all, though, I’ve generally worked – and, up until my current job, always full-time. I now work just 4 days a week. It’s care work, so it’s minimum wage – but I make enough to get by and cover everything. I don’t have luxuries. But I don’t really need them. I like my life to be simple and uncluttered. I couldn’t cope with it any other way. I need that work/life balance, too. More of my time is my own.

I did a tally the other day. Since I started work, in 1975, I’ve had 24 contracted jobs. Discounting my university years, that’s an average of 1.66 years per job. The shortest time I was in a job was 2 weeks. The longest – 7 years. The 7-year one – my first after university – was working in a wholefood shop. I kept it for so long because I loved being there. It was the first place I’d worked where I felt I truly ‘fitted in’ because I was working with people on my wavelength: artists, musicians, writers, environmental activists, hunt sabs, anarchists, hippies, radicals, intellectuals. Society drop-outs. People who didn’t ‘fit in’ to the mainstream. It was the first time I’d found such a congenial bunch of people. This was, of course, many years before I found out I was autistic. Looking back on it now, it makes sense why I loved it so much. I wasn’t alone in being ‘different’ any more. I would probably have been happy to stay there for the rest of my life. But in 1997, it changed hands and I took redundancy.

All of my jobs have been what many would judge as menial, low-skill, dead-end. Shop work, office work, farm work, driving, manual labour. Many would probably judge my current role, care work, in the same category – even though it’s one of the most responsible positions out there. Basically, they would sum me up – in spite of my degree and high intelligence – as a low-achiever. These aren’t judgements I’d ever make myself about people doing such jobs. And frankly, I don’t care what other people think. I long ago learned not to be bothered about other people’s opinions of what I do with my own life.

For me, work has generally been a means to an end – enough to cover my bills and give me a bit of spare cash for other things. I’ve never been on a proper career path and have never been a manager or supervisor. I’ve never had the confidence for one thing. For another, of course, I’ve never stayed anywhere long enough to qualify for promotions. Finally – most of my jobs have fitted in, more or less, with the 9-to-5, Monday-to-Friday structure. It’s one I got used to at school: a routine that suited me, with evenings and weekends free for me to pursue my interests. I’ve been lucky enough to stay clear of jobs that have demanded long hours, night shifts or lots of overtime, and have never wanted those things. I’ve never wanted anything with demands or responsibilities that would impinge on my spare time – because that’s where I’ve always lived.

So… I work to live. I don’t live to work.

Having said that, doing something that I feel strongly about is important to me. That’s why the wholefood shop job meant so much. It wasn’t just a job, it was a whole way of life. It was everything about who I was then and am now.

And that’s why I now work in care, and with autistic people. I may not have their levels of need… but again, I’m on their wavelength. They’re vulnerable people. They’re my people. And because of my Asperger’s, I seem to be respected and to get the reasonable adjustments I need – another big issue for many autistic people in the workplace.

In many respects, I’m vulnerable myself. I know this. I don’t have savings, or a pension pot. If I lose this job – through ill-health, say – I’ll be fully reliant on the system of state welfare. I’ve been there once and know how stressful that is. It isn’t a kind system by any measure. Likewise, if I lose my flat – if my landlord sells up, say – I’ll have to take whatever social housing has to offer. Which isn’t much where I live.

I try not to think about those things. I try to live, and get through my day, and keep the bills paid, and stay in good health.

It isn’t easy. But it could be worse.

People sometimes say to me ‘At least you’re lucky to be high-functioning, and be able to work and have a home.’

Lucky! If only they knew.

But relatively speaking, and in my own mind, I know I have a lot to be thankful for.

‘When did you first realise that you were ‘different’?’

This a question that I – along, I suppose, with many fellow Aspies – am often asked. I never have to think twice about my answer. It was one very specific morning, in my second year at primary school. I was 6.

My first year had been alright. I didn’t like being with so many other children, but I seemed to cope, and I made a couple of friends. I was top of the class in reading and spelling, and I was progressing well enough. The reports that mum and dad received said that I was bright, though quiet, with a tendency to be unfocused. But things generally seemed okay with my development, and there were thoughts that I might forge ahead and do well.

In my second year, though, something happened that changed everything for me: an incident that has haunted me ever since. I mark it as the true beginning of my sense of being different to other people; of being apart from them in some way. I don’t mean this in terms of feeling superior. I’ve never felt – not even as a child – that I was better than anyone else. In fact, I’ve never really striven to be better than anyone else. I know my strengths and weaknesses pretty well, and I’ve usually tried to play to the strengths – as most people do. But never as a way of beating or besting others. Whenever I’ve achieved good things – attained my degree, or won running races or writing competitions – it’s always been more about personal fulfillment for its own sake, rather than enabling me to feel brighter, fitter, cleverer or more talented than my peers.

That incident, though, made me feel something that I still feel, to a greater or lesser degree, to this day. It was definitely alleviated when I got my diagnosis. But it never fully goes away. It’s the sense of being not better than, or even on a level with others – but inferior to them. And not just inferior to anyone else. Inferior to everyone else. From that incident – those few long minutes on that one day, more that fifty years ago – I’ve had the overwhelming sense inside me that I’m not in with the race, but simply trying to keep up. Some days I get a second wind and am there with the pack and drawing ahead a bit. Other days, I’m lagging back in last place, and losing ground all the time. The bottom line is, no matter how good I might be at something, I’m always ready to accept that I’m failing in some way: that I’m probably wrong, and that other people know better than I do – about anything at all.

Even though it happened so long ago, I can remember so many precise details of that day. My class teacher in the second year was Miss Farnham. She was a tall, spare-framed woman with a large, beaky nose and a tightly-curled ‘old lady’ perm. She wore blocky shoes, drab dresses, and shapeless cardigans with hankies stuffed up the sleeves. She had a stiff way of walking, like she had a plank down her back, and a high, colourless voice of the kind you often hear droning from the mouths of semi-comatose back-bench politicians. She always seemed ‘old’, as adults invariably do to children, but she probably wasn’t more than about thirty-five. Maybe memory, and the way she definitively marked it for me, makes me do her a disservice in this description. Not by much, though.

Each morning in class in the second year, we did number exercises. Miss Farnham had given us each ‘number’ books, in which she’d written a different number, in red biro, at the top of each blank page. Our task every day was to turn to the next blank page and fill it with copies of the number at the top. The pages were quite big as I remember, so you could easily fit a hundred or so copies of the number in the space provided – depending on how neat or scrawling your writing was. Mine was always untidy. That, though, wasn’t the issue.

On this particular day, the number I had to copy was ‘3’. I’d learned to count, and knew the shapes of all the numbers, long before I started school. A friend of my dad’s, who came around one evening a week to go to the pub with him, had even taught me to tell the time – sitting me on his knee and showing me different times with his watch. I had the incentive to learn, because he would always give me a penny or two if I got things right. The main thing was… I knew numbers, so it was never a problem for me. I filled the page that day with number ‘3’s without even thinking too much about it. It was one of the easier exercises I had to do. When I’d finished, I handed my book in for marking, then waited for the milk to be handed out.

After break, Miss Farnham made an announcement.

“William Peace. Come to the front of the class.”

There was silence suddenly, and all eyes in class turned to me. I could tell from her tone of voice that something was wrong. Terrified, I went up to her desk. She had my numbers page open and showed it to me.

“What do you call this?”

I looked at the page, baffled. She pointed at one of the numbers I’d written.

“What’s that?”

“Number three, miss,” I said, quietly.

Her expression hardened, like I’d just called her a name. She rattled the book and held it closer to my face.

“It doesn’t look like it to me.”

A few low chuckles now came from the classroom behind me. She slapped the book down on her desk, then picked up a piece of chalk and handed it to me.

“Go and write the number three on the board.”

I looked at the piece of chalk in my hand. I looked at the blackboard.

“Come on,” she said. “Write it on the board, so that everyone can see.”

I could feel the tears coming already. I had no understanding of the situation. It seemed like an awful joke she was playing on me. I went up to the board – how huge it seemed – and wrote a perfect number ‘3’.

“No. It doesn’t go like that. Do it again.”

The chuckles in class behind me were getting more numerous, and louder. I simply couldn’t believe what was happening. Had other people been lying to me all along in telling me what the number between 2 and 4 really looked like? I drew another perfect ‘3’.

“That’s wrong, too. It doesn’t go like that.”

It suddenly felt like my brain was fusing. The laughter was now building to a chorus. I kept writing ‘3’s, over and over. Each time, I got the same response – though they were getting increasingly exasperated.

It doesn’t go like that…

It doesn’t go like that…

IT DOESN’T GO LIKE THAT!

Within a few minutes, the board was full of figure ‘3’s which were all, apparently, wrong – and I was a complete mess. The class was in hysterics. I could hardly see the board through my tears, and barely keep hold of the chalk with the sobs that were racking through me. In desperation, I wrote ‘3’s lying on their sides, like the way I drew birds, or like curved-bottomed ‘W’s. I wrote a ‘2’, then a ‘4’, then a ‘5’ – even though I knew these were definitely wrong. I just didn’t know what else to do. I was panicking – I know that now. Many years later, when I found out what ‘cognitive dissonance’ meant, I understood. I knew that what I was doing was right. Yet I was being told that it was wrong. So I naturally tried doing the wrong thing to see if that worked. But nothing did.

Finally, given the pitiful state I was in, she snatched the chalk out of my hands and sent me back to my seat. It was one of the shortest and most horrifying walks of my life, with the whole class laughing at me and bearing down on me – like the screaming crowds at the Colosseum, taunting the next helpless victim being thrown to the lions. How was it that they were all in on the deception, too? How could they not see that I’d written it correctly? Even those on my own table, whom I’d come to think of as friends, were laughing at me. Laughing at the fool who didn’t know how to write a simple number.

Miss Farnham approached the board with a flourish.

“Let’s show him how it’s supposed to be done, shall we.”

She scrubbed away my efforts with the board rubber. Then she chalked – large enough to fill the board – the number ‘3’. Except hers looked like this:

“That’s how it goes,” she said. “And that’s how I want to see you do it in future. The same way that everyone else manages to do it.”

Looking back, it seems like quite a trivial thing now. Perhaps it was my first lesson in the idea of familiarity breeding contempt. If I’d looked closer at how she’d written the number on my page, I would have gotten it right first time. But I’d never seen a ‘3’ written with a flat top before. And when I knew what the number was, from my first quick glance at it, I just wrote it as I’d always written it. Little did I realise what an impact that one tiny mistake would have on my life.

Many people would probably just get over something like this and move on. But I was so traumatised by the incident that it made me unwell, and I was off school for a few days. Mum and dad visited the school and made a complaint. I don’t know what the full outcome of that was, but I know that I returned to school soon afterwards. Things were never the same there, though. This ritual humiliation in front of all my classmates had an inevitable effect on my relationship with them. I’d never been one to make many friends, anyway, and was generally described as a ‘shy’ boy. Now, though, it was as if they had something over on me – like I was wearing a badge which marked me out. Or like they were in on a secret that I would never be party to.

People didn’t lose any opportunity to exploit my apparent weakness, and it wasn’t long before I started to get bullied by one or two of the others. Also, I was now terrified of anything to do with numbers, and fell behind with learning arithmetic. I was alright with simple addition sums, but struggled with the rest – especially multiplication. It’s difficult to express the way I felt about it all, but after that incident I sensed, at an instinctive level, that I was somehow disadvantaged in comparison to the others. Apart from with English, which was always my good subject, I fell behind. I began to dislike school.

I also began to become more isolated.

I began to feel different. And always have since.

A Martian in the Closet

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 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 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 high 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 panic attacks for the first time. Yet there seemed to be no real reason for these things. 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 then, 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, 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 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. These things all made me seem – and got me called – fussy and fastidious. For many years, up into my late 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. A mild form of autism, at the high-functioning end of the spectrum. 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 – that I had a strong affinity with. 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.