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.