This is our PDA story (Week 11)

Back now with my 'This is our PDA story' series. There is so much more to tell, so many angles to PDA (Pathological Demand Avoidance), that I can't not share these real-life stories.

Pathological Demand Avoidance is a particular type of autism. It is characterised by an almost desperate need to remain in control of your own environment, coupled with huge levels of anxiety. One of the differences between PDA and classic autism/Aspergers Syndrome is that rules and routine do not always help. The reason for this is that they are imposed by others, and that takes the control away from the adult/child with PDA. It's complicated, and challenging.
The following words are from a father who believes his daughter has PDA. Some of his words that jumped out for me were 'she acted as if she was one of the staff, not one of the children'. We have been told in the past that Sasha acted as if she was a mini teacher. Children with PDA don't seem to understand that they should act as the other children do, and not as adults. Yet in some ways, they can also appear to act like toddlers when they are much older. See, I told you it was complicated!

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Our beautiful daughter, whom I shall call Tinkerbell, was born just over ten years ago. Shortly afterwards, she evidently decided that breathing was far too much of a demand and so stopped. Thankfully, the midwives were able to persuade her that breathing is a good thing! Looking back, this was probably our first introduction to PDA but, of course, we didn’t know it at the time.

Tinkerbell was exhausting as a young child. Every time we felt like we had settled into a routine, she would change it. We kept cutting back on our outside activities because we didn’t have the energy. We looked at what other families were achieving and wondered why we could never manage a fraction of what they did. It just didn’t make sense. She started Nursery early because the health visitor saw she was such a handful and felt this was a sign that she was ready. There were some curious incidents at Nursery but nothing that gave cause for concern. What was clear, though, was that she generally chose to do her own thing rather than joining in with group activities and often acted as if she was one of the staff, not one of the children.

Looking back, things really began to unravel in year one. She was falling behind and we could see that she had not grasped some of the basic concepts. However, the teachers kept telling us it was all OK. It also began to take longer and longer to get her up and ready for school in the morning. By the end of year 2, the teachers were telling us that Tinkerbell was lazy and would refuse to do work. Getting her into school was an all-out battle most mornings and we would have meltdowns on the way home most evenings (it was a five-minute walk home but would frequently take more than an hour). At our insistence, the school tested her for dyslexia. The result came back negative but did flag up some specific issues and the school promised to start remedial sessions (these never materialised). Around this time also, a friend mentioned autism as a possibility. We mentioned this to the SENCO who was 100% clear that it could not possibly be autism. As far as the school were concerned, Tinkerbell was lazy and we were being over-protective as parents. In fact, we were told that we needed to cut the apron strings.

By halfway through year 3, we had lost confidence in the school. Every time we met with them, it was the same story: she is fine, just lazy, and doesn’t need to be assessed for help. Promises of help were routinely broken and we, frankly, did not feel the school were being honest with us. We decided to deregister her and begin home education. It was immediately apparent that Tinkerbell was a long way behind and, as we suspected all along, basic concepts that should have been mastered in year one were still not right. We also now had the problem of unpicking years of negative feedback that had left her self-esteem in tatters and meant that she was now actively avoiding anything that looked remotely like school work.

Shortly after we took her out of school, someone posted a link to the books “Understanding PDA” and “ The Explosive Child” on a home education group. On a whim, I clicked on the links and began reading. Suddenly, everything made sense! Not only were these two books describing our daughter as if they had been written specifically about her, but also the management strategies being suggested were exactly the ones that, by unconscious trial and error, we had found to be the most successful. We began joining PDA groups in summer 2013 and, immediately, it felt like home. Finally, we had found meaningful support from people who understood exactly what we were going through. We then began the long road to diagnosis in Autumn 2013. Due to NHS waiting lists, we are still waiting for that diagnosis 18 months later.

Our life has changed considerably since finding out about PDA. Our home is, generally, a safe demand-free haven for Tinkerbell and we try to keep it that way. However, she has become more and more withdrawn socially over the last year and there are a number of activities we have had to drop out of because she cannot cope. On the plus side, her self-esteem has improved markedly and she has a restored love of learning which is a joy to see. She has a wonderful character and a quick wit and we enjoy spending time with her. We feel privileged to be in a position where we can take on the task of educating her and looking after her full time and we have no regrets.

We are certainly not out of the woods yet. There is much that Tinkerbell needs to learn about coping with her emotions and with social situations. She also needs the confidence to let us go out without constantly worrying about us until we get back and she needs to learn to be happy in her own body (especially as it changes through puberty). However, overall, we are really pleased with the progress that she has made since we discovered PDA and very much enjoy being able to pay forward much of the help we have received from the PDA community.

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As always, please do leave any comments of support below as they are much appreciated, and really help to let the writer know they are not alone, and not being judged.

For more reading, and different experiences, please check out previous weeks in this series by clicking below:

Week 10
Week 9
Week 8
Week 7
Week 6
Week 5
Week 4
Week 3
Week 2
Week 1

Please do also visit the website for The PDA Society, www.pdasociety.org.uk, where there is much more information, and also www.thepdaresource.com.

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?