Managing education I'm not sure how I survived in school until I was 13, but at that point I sort of crashed and after that I just couldn't get back in. Most people assume I've had no education, because I've not been able to do exams, but actually, I've taught myself and learnt lots. Not surprisingly, school can be a challenging environment for someone with PDA, although the hardest part can be just waking up and getting into school! Anyone with Autism can struggle if the environment isn't right, and PDA is no exception. If you are at school or college it is good to be clear about what helps or doesn't help. And if you are not able to be in school, well you are not alone. Here are some thoughts on managing education... Julia: No school environment worked particularly well for me, but the best was a Pupil Referral Unit where the headmistress was fully on board, and I had a TA who I really liked. The PRU worked well – it allowed me control but in a controlled way. You could award yourself credits as well as the staff awarding you credits, and what you earned in the morning could get you rewards that same afternoon so there was no delay. This really worked for me, and also taught me an important life lesson, you have to learn how to give yourself credit for what you do. Whilst it wasn’t perfect it worked out OK, I felt accepted and understood, I had no exclusions and stayed until I was 16. Post 16 I tried to get a diploma in pre-school practice. I did my observations and work placement but couldn’t write up the reports so I failed. I knew what I had seen and done, what the objectives and outcomes were, but I didn’t see the point in others knowing. No one could give me a good reason why I should have to write it up. The red tape annoyed me. I tried hair and beauty courses but got bored. I tried computing courses but I knew it all already. I think for school to work all the staff have to have awareness and know what they’re dealing with – a dinner lady can rapidly undo everything a TA has been working on all morning. Everyone needs to be on the same page. Riko: For me, school wasn't too bad, I didn't like it but it was better than being at home. I had no idea what I was doing in school, I didn't even know what homework was when I was in high school, I basically drifted through school in a daze, masking the whole way. I have a HNC, even though doing the course made me extremely ill the idea of having to explain why I quit was worse than just putting up with all the headaches, sickness, depression and self-loathing. My advice is to recognise when your child needs help and step in, because chances are we won't ask. Education is an awful system of rules and demands that don't equate to the rest of the world, if you can avoid the whole thing then I'd recommend doing so. It's not worth the damage it can afflict on the human psyche. Sally: I got on terribly at school. I absolutely hated it. It felt like a completely unfair eleven-year prison sentence. The constraint of having to be there and stay put in classrooms felt unbearable. Set subjects felt like demands and I found them completely uninteresting. As a child I found many things magical and full of interest, but any glamour evaporated as soon as things became compulsory subjects. I was undiagnosed dyslexic and dyspraxic as well, which didn’t help and, perhaps worst of all, I had major social problems with my peers. I really wanted to be liked, but they kept me at arms’ length and I didn’t know why. I didn’t used to have meltdowns at school. I was too timid. Instead, I used to lose myself in intense daydreams and skip school as often as I could. I scored much better in my final exams than my predicted grades, but still failed by a long shot to achieve as much as I did in later life at college and university. I dropped out of numerous college courses after leaving school. I like learning and was repeatedly drawn to enrol in classes which then started feeling like demands, so I’d quit. I managed to get three A-levels at a further education college and later, aged thirty, went on to university followed by a fully paid scholarship to Australia for a year. I later trained to be a person centred counsellor. I got up to level 4, which was very demanding, but dropped out after the first term. I think I did so well in adult education because I was given autonomy and it was my choice to attend or not. I find sitting in lectures and classes excruciating, but have managed to sit through them by repressing my demand avoidance drive to flee. I do, though, find it impossible to keep quiet during classes. I always have a lot to say. I can’t just accept things I’m told, I automatically think up exceptions to rules and feel compelled to voice them. I have been surprised when lecturers have fed back to me that they have valued my input and thought I would go far in life. Please Note: All content in our ‘Life with PDA’ series of articles and our ‘ case studies ’ is a representation of the individuals own opinions and views. Please contact us if you discover any broken links.

Managing Life Lots of us with Autism find it hard to prioritise activities that seem less important. We can be less concerned about what people think of us, may have sensory difficulties, and generally want to spend time doing the things that interest us most. As a result, washing, putting on clean clothes or eating a variety of food are things that don't bother us so much. As someone with PDA, I have all the same reasons for not being bothered to look after myself particularly well, but I have this added extra barrier....a brain that says 'you can't do that, it's just not something you should do' Managing the numerous things that make-up 'everyday life' is one big headache if you have PDA. If you get anxious about going shopping, cooking your dinner, washing or making appointments, just because they are things you 'ought to do'.... it is not easy to get round. Here are some of the ways in which we are able to get by, and what happens when we don't... Riko: I actually have no problems organising my life, I just have trouble actually doing the chores, I know what to do and how, I just can't seem to get started. I procrastinate a lot. Things have to be done a set way too, and perfect, so things take too long and there never seems to be enough time to do them which also puts me off starting. I'd much prefer to play games or watch TV, but sometimes they become a demand and I end up tidying in order to avoid hobbies instead. I generally only aim to do two things every day, aside from the usual dressing and eating, but if I don't do them then that's fine, if I do more then that's great. I still struggle with feeling like I'm not doing enough but this has greatly reduced. Julia: My anxiety bucket doesn’t empty naturally (or if it does it’s very, very slow). I never want to get to the point where it’s full as then my cognitive ability becomes too impaired and I can’t cope. In order for me to be an adult for a full day (like when I attend a conference) I have to do nothing (literally) for a week beforehand. I don’t dress or wash or cook, I have no social interactions, I don’t do any of my hobbies. I sit on the sofa and watch TV. That way my anxiety is nice and low. I need another week’s recovery time afterwards. If it involves an overnight stop, it’s also a huge sensory as well as social demand." There are limits on what I can do – so if I want to be washed and dressed something else has to be dropped. I shouldn’t be annoyed by this but I am. I do feel bothered by what other people think. Sally: For me, I do want to look nice, smell clean and have a tidy home – I care about what others think of me – but my demand avoidance makes personal care and housework feel like unpleasant time wasters that I want to avoid. In coming to understand my PDA, I have learned not to feel so guilty about the many things I don’t do and to reduce the number of demands in my life. I’m a lot happier as a result. I discipline myself to carry out a few basic chores every day (e.g., making the bed, hoovering the living room and cooking dinner). Doing these chores requires me to suppress demand avoidance, which is tiring, and I only have enough energy to suppress it enough to do these few things. As it is, I need a lot of downtime to recuperate my energy. I am grateful my partner is supportive of me and does a lot of the housework himself. We have a young PDA daughter as well. She is lovely, but really overloads me, and I am so thankful that my partner is very patient spending time with her so I can have the downtime I need. If I don’t have enough downtime; if demands I can’t avoid are piled one on top of the other without enough time to recharge (such as when traveling or staying with other people) I kind of shutdown and can get physically quite ill, like I’ve got flu. I am more likely to meltdown like this when I’m tired because my mental elasticity is used up and I feel overloaded and brittle. I just need quiet time on my own to do nothing and recharge. I find some routine helpful (so long as it is not imposed). Routines, even short ones (like making a cup of tea), put things into autopilot so I don’t have to think about them and they are, in my head, just one demand. I like novelty, but new things are exhausting because they’re not “autopiloted” and all the individual demands involved scream out at me. Tony: I would imagine that I am hardly the only male with PDA that has the need to sometimes break the rules, and that can come with consequences. The point of breaking the rules is to sneak something so that I am reassured I am really the one in control of what I am doing. Sometimes I would misappropriate something from the workplace. The point was not that I wanted the item. PDA did not make me steal. Taking the item was a (poor choice of) coping mechanism to let myself feel as though I "got away" with something and was the one truly in Control of myself. My girlfriend went on vacation for two weeks so I bought a pack of cigarettes. I don't want to smoke, it's bad for my health and ridiculously expensive. The point was not that I wanted a cigarette, it was that I needed to sneak/get away with something and chose something that was a "minor offence" in the context of our relationship to fulfill the need to feel that "only I control me" which seems to be pathological in me - my girlfriend is not even a little bit controlling so it has nothing to do with her. Now, I consider myself lucky that I have almost never been caught as an adult doing this (though I was caught all the time as a child,) and I wonder... How many of the diagnosed PDAers, males in particular, have made similarly poor choices in coping methods that have landed them in prison? I have never been, but I can see how under certain circumstances and without my level of introspection, an adult scale meltdown could very easily end up in incarceration, especially for early-twenties males. Please Note: All content in our ‘Life with PDA’ series of articles and our ‘ case studies ’ is a representation of the individuals own opinions and views. Please contact us if you discover any broken links.

Managing Work 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 with PDA find we cannot 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. Here are some of our experiences.... 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. Please Note: All content in our ‘Life with PDA’ series of articles and our ‘ case studies ’ is a representation of the individuals own opinions and views. Please contact us if you discover any broken links.

Where will I end up? Here are some thoughts on futures and sources of support... Riko: I have no idea where I will end up, haha! I like advocating for PDA and want to continuing doing whatever I can to help others. I have my kids so their futures are foremost in my mind. Hopefully the things we are doing today will help them in the future, so they don't have to struggle the way I did, lost in the dark. What I really want is to meet other PDAers, I want there to be groups not just online but offline too, but in a relaxed, no pressure way. I wish there could be PDA schools, that would be awesome. We need more scientific research done too, we're all guessing the specifics of PDA so some factual information would be very helpful. If we could find the gene that causes PDA that too would be of so much benefit, then we could speed-diagnose PDAers and focus on getting them the right diagnosis and the best help for them, rather than spending two years or more for a barely accurate diagnosis. There's still so much to be done, but every day is a step in the right direction. Sally: Although demand avoidance and other issues have prevented me from having a career, I have achieved some very rewarding and innovative things on a voluntary basis (for example, conceiving and setting up my city’s first club outreach project). I have personally benefitted a lot from person centred counselling (of which I have been a long term client many times). I love the ethos of person centred counselling. I think it harmonises with PDA needs in that it empowers the client to find their own solutions to problems. I was inspired to train as a person centred counsellor and gained many (to me) vital social interaction skills during this process. Person centred counselling, however, is only effective if the client wants to put the effort into moving forward. For this reason, I think, it is only effective for PDAers who genuinely want to engage. We can never be forced into a process. Counsellors I’ve seen referred me to two more structured therapy courses that have been proven, via brain scans, to rewire the brain out of “stress pathways” (my term): Compassion Focused Therapy and Mindfulness (which I still practice, very briefly, every day). As a result of these practices, my PDA anxiety is now hugely reduced and I am more happy and productive than I’ve ever been in my life. Part of this happiness, I think, lies in having learnt to accept myself – including my limitations. I have also benefited greatly from joining a Facebook adult PDA support group. Being able to discuss my issues in an accepting and knowledgeable place his very helpful to me and I don’t feel alone any more. Julia: When I was younger a policeman told my Mum I’d end up in prison, teachers told her I’d amount to nothing. I’d have written me off myself. But just because you might be or feel unmanageable when you’re young doesn’t mean things won’t change. So I feel it’s important to be optimistic, to be willing to look for a positive in everything even if it takes a while to become apparent. Finding my tribe – mostly other adults with PDA but also other people who have lots of empathy – has been a huge relief and source of joy for me. Here was a network of people who not only didn’t judge me when I finally found a hairbrush I could bear to use after many years of searching after my old hairbrush was discontinued, but who also shared in my joy and all came back with their own equivalent experiences. Tony: Where will I end up? Well, if you asked me at 35 I would say that after having worked for 19 different companies in 17 years, only once ever being able to briefly rent my own apartment, no long term relationships, and having isolated myself from almost everyone in my past... I would have told you I was on the track to homelessness. It was about then that I started reading up on Asperger's since there had been such an explosion of information at the beginning of the century and finally went to seek help. That is when my PTSD was discovered. It was about a year and a half later that I first learned about PDA and had the "aha!" moment. Better able to understand why I am the way I am, I was able to enter into a relationship more honestly, as in not trying to pass off that I was an NT when clearly I am not. I have met an incredible woman and we have been together over three years. We live almost the reverse of a 1950s relationship when it comes to work/housework. She works at a grocery store, I do the housework. I do not see it as a demand because if I don't get to the dishes one day, I am not in trouble about it, she would be happy to do them. But I shudder to think where I would be right now had I not met her so I try to do any household chores I can before she has to ask. She is going out there into the cage (work) every day and interacting with the people. I don't do the housework as a demand, I do it out of gratefulness. It allows me to pursue my interests without there being a wage held over my head to coerce me into doing them. Being able to work at what I want, whenever I want, without being under any demand that I don't choose myself, has allowed me to flourish in some of my areas of interest where before I was flailing and failing to get by. I have no idea how I would have enacted this opportunity without her and I am eternally grateful to her. But underneath our relationship is based on far more than my being grateful to her, she is intelligent and amazing and I really do love her with all my heart. Please Note: All content in our ‘Life with PDA’ series of articles and our ‘ case studies ’ is a representation of the individuals own opinions and views. Please contact us if you discover any broken links.