Tuesday, 22 September 2020

Our PDA Story {Week 50}

Over the past 50 weeks of this 'Our PDA Story' series, many experiences have been shared. All of them different in some way, different genders, different ages, different situations, but all with something in common - the challenges of trying to live with the Pathological Demand Avoidance type of autism in a society which is set up for neurotypical people.
pink and purple square logo with words our pda story, experiences of families living with the pathological demand avoidance profile of autism
There are a few Facebook groups concerning PDA, with many parents, carers and adult individuals in them. So many people in fact, that it raises questions about why there is not already more understanding and acceptance of this 'condition'. I came across a comment from one member of the groups and asked if I could share their experiences. This writing resonated with me because I feel that 'accepting' is the way to a more successful life for those with PDA. Trying to fit a square peg into a round hole will never work and maybe the best solution is working at creating square holes? 

I also loved this comment because of the positive outcome. For those with younger children, who feel like life is impossible, I think it's better to not dwell on the future and not to hang onto all those fears about what life might be like. It's true for any parent that our children can always surprise us, and this also applies where Pathological Demand Avoidance is concerned too. 


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My son is 13 and I used to be cautious in my thinking about autonomous parenting. He was diagnosed as autistic at the age of 9, after a 4 year wait via our local NHS and was seen as complex.
He had been under a pediatrician since the age of 5. 2 years later he was identified as being extremely demand avoidant via a national NHS service at the age of 10.

It was certainly easier as a younger child to create the perception of him being in control. His anxiety also reduced with the use of things like fantasy, characters, role play and communication through toys etc. However as he has got older and his social communication skills have improved, so has his perception and his ability to detect expectations. We can't use elaborate and fantastical ways to help demands be less threatening now at his age.

What we've had to do is be very honest and trust that if our son is not doing something, it's because at that time that he can't, he's unable to but also to trust that when he feels able to he will. We've had to let go of our cynicism and the idea that he just wants to take us for a ride or gain more and more control. This was never my view but was certainly a view that was projected on to me by many professionals, over the years.

This isn't the case, it's just about finding a balance for the individual where they can feel safe and calm but also, as a result of that, be receptive to modeling and taking in the positive experiences, individual and life lessons that are around them at any given time. Their highly perceptive mind can identify these these lessons and information at a very early age but if they are in a cycle of seeking control and highly anxious, then they are far less likely to benefit from recognising them, along with the development of other skills such as communication and emotional regulation.

My son got to the point where his school could not meet his needs and he has an EOTAS program. Now after two years, out of school, with pretty much full autonomy, medication and time to decompress, he's recently made his own decision to return to education. Because he has researched and observed examples around him that have led to the belief that he needs to have GCSEs to get a job and go to college.

After his placement broke down 2 years ago, I initially encouraged him to go back to school, however I did this at the wrong time and probably prolonged his recovery period. He needed time to recover, decompress and reboot. The concern I had about him getting bored at home and not being at school, escalated his distress. I now regret this and absolutely accept that this was the wrong thing to do.

I want to make it clear that autonomy does not mean, not having in place moral guidance, support with emotional development, communication and interaction, or any focus on learning for the child. I think there are misconceptions that PDA children who are given control seek more control. This is not true, they seek a balance and only seek more control when they feel out of control. They do not oppose rules and authority, it's more that they do not understand these constructs, to PDA people they have no meaning. 

If a child has had all the other required support and modelling from the parent, most PDA young people actually end up having a very strong moral compass and when given autonomy tend to make very wise decisions. Because part of their uniqueness is that they are often older than their years in terms of perception, insight and problem solving and empathy. It's just the self regulation and the implementation of these ideas that can become a challenge for them. Particularly if they become very disorientated by the need to seek control.

There a lot of false perceptions about PDA kids around and I think you really only gain a comprehensive understanding when you are PDA, are a professional that's worked with many young people and/or adults or you have seen the long term outcomes that can be achieved with an individual and autonomous approach to the child.
We are all on a journey and it's very important that we try to be open to those ahead of us on that journey and the lessons they've learned along the way.

There is a lot of fear, about these children never understanding rules or boundaries or becoming conduct disordered etc. This is a fear and not reality for a child that has had all the other parental input, emotional support, communication and interaction support, learning support, modelling of moral values etc. These are the things that support the child in to adulthood and in order for a child to be calm and settled enough to be receptive to these things, a relationship or understanding, empathy and trust must be in place for them, certainly at home and in an educational setting.

How do I know this? Because I have adult PDA friends, , I've seen many parents ahead of me on the journey and have been open to learning from their experience. I read a lot about autism and PDA!

My 13 year old son, has not had a meltdown for 18 months, is intelligent, kind, compassionate, empathetic, educated, he has not become a conduct disordered teenager and has himself led us on the journey where now he has decided that education is important to him.

I've been so lucky, on our journey to have learned so much from my son, other people PDA and some amazing PDA advocates and campaigners and I'll be forever grateful for the lessons they taught me. 

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Thanks for taking the time to read. Comments are much appreciated, and sharing on social media could help these posts reach people who have still not heard about PDA. The PDA Society website has a huge range of information about Pathological Demand Avoidance.

For more reading about what Pathological Demand Avoidance is, please see my page 'What Is PDA?', and for an idea of how to help please read Strategies For PDA

Sometimes PDA can be misdiagnosed as ODD (Oppositional Defiant Disorder) but there is a definite difference between the two conditions. My explanation can be found here in my post the difference between PDA and ODD

A variety of other experiences of living with PDA can be read under the title Our PDA Story


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



To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

Books about the Pathological Demand Avoidance (PDA) profile of autism


What is PDA (Pathological Demand Avoidance)?


Ten things you need to know about Pathological Demand Avoidance


Does my child have Pathological Demand Avoidance?


The difference between PDA and ODD


Strategies for PDA (Pathological Demand Avoidance)


Pathological Demand Avoidance: Strategies for Schools


Challenging Behaviour and PDA


Is Pathological Demand Avoidance real?


Autism with demand avoidance or Pathological Demand Avoidance?



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