Our PDA Story {week 29}

Time for another guest post in the series 'Our PDA Story', and this week I'm pleased to be able to bring you an interview with an adult who is diagnosed with Pathological Demand Avoidance.

For me, it's so important to see and hear from adults who are living with PDA. Of course it's not likely that Sasha will turn out exactly the same as them, as everyone is of course different. We can definitely learn from their experiences though and it helps me understand Sasha better.

Julia is very busy; she writes her own blog at Me, Myself and PDA and has taken on talking engagements to try and help others understand. So I'm delighted that she found time to help answer my questions for this week.

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What's your name and how old are you?

My name is Julia Daunt and I’m nearly 35.

At what age were you diagnosed and when was PDA first mentioned?

This all came about when I was 11 and, after a night of self- harming, I was admitted to the children’s ward of our local hospital for a total of 2 weeks. Up until this point it had been assumed by services and professionals that Mum was to “blame” for my behaviour but once I became their problem it soon become apparent that much more was at play than mere parenting. PDA was first mentioned to my mum by the child psychiatrist that I was seeing at the time. Mum was unable to research much into PDA as there was very little information out there and nor was there the Internet. She had to wait 2 weeks for the local library to gather what information they could. I was later referred by the NHS in Devon to the Elizabeth Newson Centre in Nottinghamshire when I was 12 (1995). It was there that Elizabeth herself diagnosed me with PDA. At around the same time I was also assessed at Guys Hospital for ADHD, which I was diagnosed with and prescribed Ritalin for. I was also diagnosed with psychotic episodes by my psychiatrist (the one who mentioned PDA) in Devon.

What kind of school(s) did you attend and what are your memories of it?

From an early age Mum was very aware that I was very different from my siblings and peers. She instinctively knew that a typical play-group setting would be inappropriate for me so she enrolled me in a Montessori. Although I had problems there, it was one of my most successful placements, mostly because of the completely autonomous approach. From there I went to a mainstream infants and junior placement. This posed quite a few challenges and I was often suspended. Mum was also often called into the schools for meetings with the headteachers. When I was 10 we made the big move from Reading to Barnstaple in Devon. I was enrolled in a local primary there for the last year of primary school. Things continued downward, as they had done for many years. Sadly we still at this point had no support from services. I sometimes wonder if we had, then maybe things would have been different. My secondary school placement was a disaster from the word go. My primary school and the secondary school had had a meeting prior to me starting and they had decided that it would be better for me if I was in a tutor group (homeroom) with no one I knew from primary. They thought the fresh start would do me and my friends (the few I had) some good. I remember my first day of secondary school vividly. I’d missed the first actual day because of a family holiday so by the time I arrived everyone had already made little groups so I was completely isolated and knew no one. The only time I would see people I knew was at breaktimes and in the occasional lesson. It didn’t take many weeks for these connections to be lost as they made new friends and moved on. I suddenly found myself completely friendless and now not able to enjoy and rely upon being the biggest and the eldest. Within weeks I was hanging around with fellow misfits as we all sort of naturally gravitated towards each other. I was smoking, stealing money, drinking alcohol in school and bunking off school. I was almost permanently in detention and was suspended a few times - none of this punishment worked. As a final punishment I was placed into “isolation”. This was basically a disused room (mine came complete with a working gas oven) in the school where they brought you at the beginning of each day and there you remained, alone, until a teacher came to get you at breaktime, lunch and home time. They would give me a work book to complete (which I never did). They escorted me to the dinner hall to collect my lunch and then it was back into the room to eat alone. I wasn’t allowed to see or talk to anyone.

I wasn’t the only one in isolation - many of my new misfit friends were too. It didn’t take us long to cotton on to the fact that they couldn’t and didn’t lock our doors because of the risk of fire etc so we just used to wait until the bell rang when we knew each teacher was busy teaching and then we just used to walk out of the school and made sure we were back in time for breaks. They never cottoned on or if they did they didn’t care. It only took 5 months before this placement completely broke down and I was expelled. I had a total of 18 months out of school, during which time I was diagnosed, and then I was sent to a PRU (Pupil Referral Unit). There I remained until I was 16. Like at Montessori this placement wasn’t without its problems but it was by far one of the best placements. I had a full-time 1-1 who also drove me to and from school. I was happy there. I learnt and I made friends. I like to think of it as my happy ending after so much crappy schooling.

Do you remember feeling different to other children at any particular age?

I cannot remember a time when I didn’t feel different from my peers so I think I’ve always felt that way. I’ve always just “known”. I remember feeling frustration that I couldn’t fix myself and just behave myself like everyone was asking me to do. I wanted desperately to fit in too. I wanted to be liked and to have friends. I hated being “that” child. I hated not being included. I did have some friends growing up but they were few and far between. Many didn’t last long.

Did you reach a point where you felt you had come to terms with your diagnosis, and if so, what made that happen?

For me that didn’t happen until I was in my 20s. I was told about PDA etc as a teenager but I think I chose to ignore it. Also, at the time of my diagnosis, we were told it was rare so I never bothered to look into it and to research it and it’s not like you see it mentioned in the press all the time. It’s a pretty easy diagnosis to ignore if you try. I don’t remember why but one day I just decided to Google it and up popped the-then PDA Contact Group (now the PDA Society) and I was stunned at how many parents there were out there.

Talking to parents was great but it also spurred me on to create the Adult PDA Support Network (www.facebook.com/groups/adultPDAsupportnetwork) because I wanted that personal connection. So I sat and waited. It took a long time but eventually they started joining and sharing their experiences. I loved and hated it all at the same time. I loved feeling part of a bigger-than- just-me something. I loved feeling that connection. I loved knowing that I wasn’t alone. I loved helping others find themselves, just like I had done, but I also hated the fact that I hadn’t done it sooner. I hated the reminders of my past. I hated realising I was very different from others. I felt ashamed that I hid my PDA for so long - I think part of me hoped that if I ignored it then it’s not real.

Are you living independently now? What are the biggest struggles you face?

I think the answer to this depends on what you mean by independently. I’m independent in the fact that I don’t live with my parents but I do rely heavily upon Paul (my partner). In that sense I’m not what I would call independent, although I like to think I am. Sometimes I plan life like I am independent and then it falls to Paul to help out to make those plans happen, even if that means he misses out. I don’t like that.

There really is no aspect of daily living that I don’t need practical help or moral/emotional support with. Everything from cooking and cleaning to hobbies and social activities are done only when Paul helps and supports. Without him my already small world would shrink massively. He really is my rock. One of the biggest struggles I face is having to continually explain myself and my problems to professionals. Over and over again. Sadly it never seems to make any difference. With the exception of a few many don’t understand me and assume that because outwardly I seem to be just fine then that must mean I am. Many don’t bother to go beyond what they first see.

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Thanks for taking the time to read. It would help lots if you can share this post further; in groups, on Facebook or Twitter, any way you choose. Just one more person reading who may not have otherwise seen it will help spread understanding, and it's difficult to be heard in amongst all the other news on social media these days.

Please do leave comments below as the writers definitely appreciate support; for more reading about Pathological Demand Avoidance, please see my blog post 'Challenging Behaviour and PDA'.

PDA can sometimes be mistaken for ODD (Oppositional Defiance Disorder); this post of mine explains the difference between PDA and ODD.

To read previous examples of living with PDA, visit This is our PDA story. This includes experiences of parents of girls, boys, young and old, and also includes some from other adults diagnosed with PDA.

If you feel up to sharing your experiences with my readers to help spread understanding (this can be anonymously), please email me at stephstwogirls@gmail.com.

The PDA Society website is full of useful information and resources, and more good information can also be found on the PDA Resource.

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?