Trying to have a job when you can’t cope with being told what to do, even if you are doing something that you want to do, is pretty hard
Many of us PDAers find we can’t work in a conventional way. While some become entrepreneurs (enjoying running our own business as we are in control) and others try out freelance work that gives us independence (like taxi-driving, proof-reading, or graphic design), some of us have to accept that working life is not what we though it might be. Luckily, being able to work isn’t the only way to maintain self-esteem.
Tony: As far as work is concerned, there is something that truly hits home about a wage being a demand. I am no longer doing the task, no matter how much I may truly enjoy performing the task, of my own free will. I am now doing it because there is a wage being dangled over my head that can be withheld if I do no do the task. That takes 100% of whatever personal reward I may have had in doing the task away. Under the condition of taking a wage for the task, the activity can become almost unbearable.
So how to cope? After a while I begin to feel trapped (like a caged animal) at a job. As a coping method I have tried updating my resume, and then even going out on interviews. If the interviews go well, it makes me feel as though I have other options instead of that job and therefore lets me feel that I am choosing that job instead of: I have to go to the job or I get no wage and am therefore homeless so I am essentially being coerced under threat of destitution to get into the cage every day. This has ultimately served as a bandaid, but in the end, the demand of my current job becomes overwhelming and I jump laterally, or even for a pay cut, to a different job.
Another point that hit home with me was that in school my relationship with a teacher was more important than the specific demands made. This strongly transferred to the workplace for me in adult life. If I liked the person making the demand, and they made the demand as a request, I was instantly more likely to complete the demand. Some of it was the demand being delivered as a request, some of it was the reward of making the boss, who I saw as a friend, happy. Under those circumstances I was infinitely more productive.
Conversely, if the demand was issued as an order and/or if I perceived it to be in a condescending or disrespectful manner, especially from a manager I did not like, I was compelled in some way to subvert that order or that manager otherwise it would fester in my mind until I acted out in a way that “made things even” in my head. In the situations where I liked the manager, I would find myself in quite the dilemma. In order to follow the rules, I need to break the rules to make myself feel as though I am following them by choice. When I had a manager that I liked and respected, I had a hard time picking a rule to break out of not wanting to be a disappointment to the manager.
Julia: I’ve always been into crafts (this can often become quite obsessional, I’ll have an idea on Saturday afternoon and by Monday I’ll have the whole kit!) so I tried running my own market stalls selling painted glass or handmade cards, but I didn’t sell much. I volunteered in a charity shop one afternoon a week, but then they wanted me to do more shifts and it all became too demanding so I gave it up.
Although I’ve accepted that I won’t work I haven’t accepted why. Demand avoidance is everything. Work is a demand too far. After a day of social interaction I might need a week of recovery. I can’t work one day a week, or have a TA at work or have an office all to myself. I’d need too many accommodations. I’m too disabled. It’s not like putting in a wheelchair ramp. And then with my ADHD I’d get bored too quickly.
I write a blog, I’m admin on the Facebook page for adults with PDA as well as many other Facebook groups, and have my own Facebook page. I also give talks and attend conferences. I’ve also just been appointed as a trustee for the North Devon Forum for ASC and ADHD.
I tried to adopt an ‘exposure therapy’ approach to work, but that just ended with complete shut-down. I got depressed because I didn’t have anything to fill my day with. I hate being a burden on society and the stigma of being on benefits. Being a PDA advocate, helping others and learning about myself as I go along, fills this gap and gives me a purpose. And because it’s not an every day, 9 to 5 thing it’s a ‘when I can handle it’ role, it works for me. Because having PDA means that I don’t care about hierarchies, I genuinely don’t think any more or less of anyone based on their job. But everyone needs a purpose and to do something they find fulfilling. Not having somewhere to put myself where I fitted is where lack of self-esteem comes from.
Riko: I haven’t had a lot of jobs, my longest ‘job’ has been as a parent and that’s by far the hardest. Scheduling lots of downtime is vital for coping in the working world, but after going through school, work doesn’t seem as bad.
If I were to work now I would explain to my employer about my difficulties and ask for them to phrase demands in PDA friendly ways. I would ensure I kept socialising to a minimum and do a job that was so repetitive it becomes automatic so I could daydream while doing it (though this isn’t for everyone). Self-employment is good for those who have the skills … I don’t, any business I created would fail, I’d much prefer to do all those boring jobs that no one else wants. It’s important to choose a role that a PDAer can do, that they like and that has plenty of room for accommodating the PDA aspects of the individual. Basically, work to your strengths.
Sally: I have never wanted a job. The idea of employment has always felt like a prison sentence, and I’ve fled many jobs because I’ve felt unbearably trapped. I have though wanted to work so as to comply with social pressure and, also, I do like having stuff to do.
My first job after leaving school was in the Civil Service. I felt like a fish out of water in the office and suffered huge stress and social anxiety. I used up my entire three-week holiday allowance in the first month then quit (after sneakily graffitiing anarchy symbols all over the work place!).
I continued to spend the majority of my life unemployed. I had no diagnosis or awareness that I had any form of autistic spectrum condition, but knew I couldn’t cope with being an employee, although I couldn’t articulate why. At one point, I tried explaining that I got really claustrophobic in work environments so I felt like I had to escape, but no one seemed to buy this. Lack of societal acceptance though didn’t change the reality that I couldn’t work. I have spent most of my life in dire poverty.
Some people have remarked that I’m always doing something and I have flourished at times producing artwork, doing voluntary work (on my own terms) and in adult education – but I’ve felt stressed when course expectations are for me to then gain employment. To me the concept of “gaining employment” feels like submitting to being shot in the head.
I had an epiphany aged about 30 that some/most people actually want to work. This is a totally alien concept to me (but it doesn’t mean I don’t want to be productive and helpful to society). I did once really enjoy being a pub Sunday roast cook. I had a lot of autonomy, scope for creativity and I could take quick breaks whenever I wanted if there was a lull period. I then had a stint being self-employed pub quiz writer/reader. This didn’t earn me big bucks, but I had the level of control I needed – just about – for the work not to feel too much like a demand. The need to come up with new questions though became a draining ordeal. I don’t think I’d have coped if I’d earned enough to have to pay tax, because paperwork and budgeting are prohibitive demands to me.
I once worked freelance as a graphic artist for a company that found me commissions. It wasn’t full-time, but I liked working this way. I was happy for the company to take a commission from what I earned so I didn’t have to deal with the business side of things. Wages are not a motivator for me. In fact, being paid a wage turns activities into demands that I’m compelled to avoid. My ideal career future lies in having an agent so I can produce creative works unhindered by admin demands. In the meantime, I am now on disability benefits and not in poverty for pretty much the first time in my life, which is really great.