It was great to see PDA (Pathological demand avoidance) highlighted on Victoria Derbyshire yesterday but watching the piece, one thing really struck me:
Challenging behaviour was presented as part of a PDA profile. It’s not.
Yes, many PDA children do or have exhibited it at some time but it is not a trait of PDA, it is a symptom of being misunderstood, it is a sign of being desperate and overloaded because anxieties have not been recognised or triggers identified. It is a PDA child’s cry for help.
The same can be said for another common reaction – self harm.
Our children are being failed, and being set up to fail, our children’s needs are not even being recognised let alone met. How do I know this? I know this because my son used to react in exactly the same way as the children on the film, he harmed himself and others from an early age. I tried to understand, I followed the advice of professionals, I blamed myself and was blamed by others, I scoured the internet, I begged the school, I begged the assessment team, I did everything I was asked to try following it word for word, I went to the school and voiced my concerns to Teachers, sencos and headteachers at least 3 times a week for 6 years. Nothing helped until I learnt about PDA and used;
The very specific strategies needed by an autistic child with a PDA Profile.
I tried to get the school on board but because (despite being diagnosed with autism using the PDA traits criteria) my area does not recognise PDA. Instead of seeing these strategies were starting to work at home and getting on board with them, the school and LA stuck rigidly to classic autism approaches (so much for a person centred approach eh?). More than that I was accused of medicalising my son by making up a diagnoses of PDA and I was reported to social services. Social services where fully supportive of my approach and gave me a pat on the back and sent me on my way, school maintained there position and so it broke down, leaving me no option but to home educate.
Devastated as I was at the time at my son being forced out of state education, it turned out to be the key to securing him a better future.
You see once my son was being approach in a PDA friendly way all of the time (instead of just when he was at home) aggressive acting out of distress stopped completely, attempts to run away or self harm stopped completely. He remains naturally anxious and needs reassurance and to feel both supported and in control of what is happening around him as much as possible because these are traits of PDA but he is no longer exhibiting the signs of trauma ie challenging behaviour. Instead his loving, funny, caring, bright and engaging personality is able to shine through. He is beginning to be able to understand his own strengths and weaknesses and regulate himself by knowing when he needs down time, time alone or time to prepare and when he feels receptive to being more social or trying new things.
I suppose what am trying to say is the lack of acknowledgement and understanding of PDA by the education and healthcare system is traumatising our children, they then behave in desperate ways that are against their natures including, in many cases, aggression.
PDA children are being failed on every possible level and then written off by society as if it is their fault and we, their families, are left to pick up the pieces the best we can. Things need to change and I believe change starts with PDA being recognised as a diagnoses. Mike Penning MP has proposed an early day motion on this matter and you can help by writing to your MP and asking them to support it. Everything you need to know and a template letter is available through the PDA society just follow this link:https://www.pdasociety.org.uk/blog/2018/10/early-day-motion-about-pda
For more about the approaches that helped my son follow the link to my blog on the low demand approach
If you need advice and support for your PDA child or think your child may have a PDA profile then visit The PDA Societies website