Where will I end up?

Here are some of our thoughts on futures and sources of support … you may also like to check out self-help, coping strategies and therapies and the pathway to support pages.

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.