9 to 5
Work is clearly an issue for many people with Asperger's Syndrome. 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 quite fortunate compared to some. I started work after leaving school early at 15 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. I soon find it exhausting being around other people for long periods of time. It isn't about being anti-social. It's just that I miss so many social cues, and usually end up side-lined - so I have to make an extra effort to 'fit in'.
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. People are astonished when I say I manage well on less than £12k a year. 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 in society as it is today 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 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. Or anywhere else now, come to that.
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.