Point of view: parent : PDA doesn’t exist, apparently

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Tom Browne fights for his children’s education.

Let me talk about my son George who is 13 and has autism with the Pathological Demand Avoidance (PDA) profile. Whilst we have been living with PDA for a number of years, NHS health trusts up and down the country still refuse to recognise it claiming not enough research has been undertaken. PDA is however recognised by the National Autism Society and there is a very active PDA society. Ironically, if one pays health professionals privately the PDA profile magically becomes available.

What is PDA?

Very briefly the main characteristic of PDA is to avoid everyday demands to an extreme extent, even activities the person would normally like. Being in control helps to reduce the chances of overwhelming and extreme anxiety taking over. When living with someone who has PDA the golden rule is to choose your battles carefully.

George can be both physically and verbally aggressive, but he does not want to hurt us and is mortified if he does. PDA is counterintuitive to autism. George has great communication skills, eye contact etc but his anxieties are all consuming with a constant need to be in control. For the PDA child it is an inability to do what is being asked, who will instead come up with any number of excuses just to retain control.

George has a sister Millie aged 17 and a brother Harry aged 16.

In 2017 George’s world and ours quite literally turned upside down. Within days of each other both George and Harry were referred to CAMHS as emergencies after what happened in school. George, just 9 at the time was put on anti-psychotic medication whilst Harry, who is also autistic, had a mental health breakdown after he was given a detention for not doing his homework up to ‘standard’. He remains a total recluse.

Up to this point the boys were just diagnosed as borderline autistic meaning they missed out on vital support and were in effect pushed through mainstream school until it all became too much. The boys were quite literally handed back leaving my wife Becks and I to pick up the pieces. In an attempt to provide a fresh start we moved to Kent in 2018, but this has not gone well.

Fighting for an education

All three children have an EHCP, these are not worth the paper they are written on. George has been out of school since May 2017, apart from a few disastrous months in a special school which flatly refused to recognise PDA and as a consequence tried to control George’s every move. Following an appeal to the SEND Tribunal, George now comes under the label ‘EOTAS’ meaning he is to be educated at home as there are no schools available that understand his needs. He has recently built up a good rapport with one his online tutors who understands George but the few hours each week hardly make up for what is being lost.

The lockdown has not brought significant change for us, whilst we have to listen to all the coverage about the ‘damage’ it is causing children who have just missed a few weeks of education. No one cares about children with SEND who cannot access education including ours who between them have missed 10 years of education.

In September 2020 we were on BBC Panorama ‘Fighting for an Education’ which just touched the surface. Numerous appeals have been pursued through the SEND Tribunal with more to follow. 

Investigations have been conducted by the Ombudsman with further investigations ongoing. There is so much to say but who will listen? Our journey through the maze of SEN illustrates just how broken the system is and the fact there is no accountability. It is not a level playing field and no matter how loud you shout no one listens.

Whilst at times it can be extremely challenging, especially for Millie and Harry, the rewards can be immense with George providing so much joy and love. What is so difficult is that those who should be helping George to live a fulfilling and rewarding life fail him at every opportunity. We have even been accused of fabricating the children’s illnesses for money. The situation would surely be so much better if only the NHS would only recognise PDA.

Tom Browne
Author: Tom Browne

Tom Browne
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Tom Browne is a Litigation solicitor with Kingsfords solicitors in Ashton Kent

Twitter: @thomasnbrowne

Linkedin.com/in/tom-browne-5342a62a

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