I spent the last decade as a clinical practitioner – a Specialist Consultant Educational Psychologist to be precise- working in private practice with some very special children and their parents. The youngsters all presented with Pathological Demand Avoidance (PDA), which is part of the Autism Spectrum. You can find more information about my PDA work here
I chose to complete the assessments which parents commissioned me to do, by visiting and working with the youngsters in their own home; and if they were attending an educational provision I visited there as well. You can learn more about my unique and successful way of conducting diagnostic assessments for PDA here.
I really enjoyed the challenges of trying – with varying degrees of success- to engage the youngsters in a variety of activities not of their choosing, as well as observing them engaging with their parents, and in their own activities.
At the end of the assessment I would trundle home and write up the findings of my assessment as a detailed report for parents to use as evidence in order to secure the required support and provision for their PDA youngster.
The report format was extremely formulaic in structure. It had to set out in detail all the evidence I had secured from various sources including:
- parental and school questionnaires
- observations of the youngster at home and school
- the findings and results of any assessments I had managed to complete with the youngster
- professional discussions I had conducted with their parents, and senior school staff
- a review of existing documentation, reports and letters from other professionals
and then set out a series of recommendations and my professional opinion. All reports followed the same structure. Some were punctuated with photographs of the youngster engaging in activities or with me– included with parental consent. At the end of the report writing process parents would have a detailed, specific and quantified document stating clearly the PDA diagnosis, – against the existing Newson diagnostic criteria, and a detailed picture of the youngster’s PDA presentation, and my professional opinion regarding their support needs and provision.
The language which I had to use in the reports I wrote had to conform to specifics required legally as part of the England Wales and Northern Ireland SEN system, and in order to assist the SENDIST Appeal and Tribunal system across the three jurisdictions. Right down to the use of the phrase ‘must receive’ rather than ‘requires’, every word in my reports was pored over by parents, their representatives and in many cases Solicitors and Barristers. There was no room whatsoever for doubt, or a lack of detail, specificity or quantification of support and provision. My reports were highly valued, and much lauded and praised by parents, their reps and legal teams alike. They were unequivocal in setting out my professional opinion in respect of the youngster’s PDA – including a PDA diagnosis where merited and the requirement for individualised, bespoke packages of educational and therapeutic support and provision.
In recent years I have been working with parents who either seek to secure, or have secured, EOTAS provision and packages. EOTAS is Education Otherwise Than at School (Or College = EOTASC). I have increasingly been of the opinion that for 90% of youngsters with PDA education in a school-based setting is just unsuitable, unrealistic, and downright damaging for them. Parents have updated me about the benefits and successes of these EOTAS packages for their children. It has been heartening to read.
So why, given my enjoyment and success as a Clinical Specialist in PDA, did I choose to cease doing the much needed and highly valued assessments and reports?
My primary reason is that for many years it simply proved impossible to conduct PDA assessments, write reports and also write the book. I needed space and time to write the book, and I needed an intense and close up period of writing of reports. The two processes were incompatible. So for many years I prioritised my much needed PDA assessment service.
Alas despite enjoying writing reports, far too frequently, my professional opinion was trivialised, minimised and marginalised by Local Authorities who sought to discredit my knowledge and insights into PDA gained from over a decade in this highly specialist and contentious field. My PDA expertise was challenged by Local Authority Educational Psychologists, and I felt I was not valued by my so called ‘professional colleagues’.
In contrast, however, my work was largely valued by the SENDIST judiciary and I have received positive feedback, and acceptance by the SENDIST Tribunal panels regarding my written and oral evidence on the matter of PDA in youngsters. In short the SENDIST Panels at Hearings have accepted my expertise and found in parents’ favour, drawing on my clear, nuanced yet persuasive evidence in my reports. The lack of acceptance and continuing fight to be heard by Local Authorities and their Educational Psychologists has, however, played a major part in my decision to step back from clinical practice.
Of course since stepping back from clinical practice I miss greatly my attempts at engagement and interaction with the most amazing group of youngsters with PDA that any professional worth their salt ought to feel extremely privileged to work with. I have learned SO much from every PDA youngster I have ever been able to see (or in a couple of cases not quite see!). The insights I have drawn from each youngster, and the ways in which that has led me to think very differently about PDA, its presentation, youngsters’ needs and the damage done by ignorant schools and professionals, have left me with a wealth of information and knowledge which really demands a wider audience than my reports have ever had.
The reports I wrote would only, at best, be read by about 10 to 15 people. At least the book stands a chance of reaching a much wider audience. It may have a wider influence and impact on the world of PDA. Plus, I am able to draw on the scores and scores of youngsters I have assessed, and can represent some of their often horrific, and generally vexing stories in the form of pseudonymised case studies in the book. So in advance of the book’s publication I offer my warmest and most sincere thanks to this spectacularly special group of youngsters for just BEING who they are, and allowing me into their world for a very brief period of time so that I could develop my insights and understanding about both their unique PDA presentation, and also determine something of the similarities and differences between the various youngsters’ presentations. Most importantly, the book stands as an opportunity for me to set out my thinking – new insights – into this most perplexing presentation. It gives me the chance to share that knowledge with a wider audience, in a freer and less constrained way, and in a way that truly reflects my beliefs and values about youngsters with PDA. I am looking forward to my new found freedom. But as someone once wrote in a card to me on my divorce ‘freedom can be scary’. And indeed the freedom to write after being in shackles is indeed so.
Even after a few months away from clinical practice, I am finding it so hard not to let myself get pulled back into PDA assessments. I still receive email requests from parents even though my old website was consigned to the www scrapyard some months ago. More importantly, I am finding it hard to complete the professional identity shift from practising Educational Psychologist to Writer. Again I vacillate between the two, and crossing the bridge to ‘the writing side’ is still providing me with daily challenges and resistance. And I have not yet made the progress I had envisaged and planned with the book. I have been suffering from Imposter Syndrome. Until now. I have spent several weeks sorting all my material and draft content for the book – New Insights into Pathological Demand Avoidance- and my next blogs will focus on sharing some of my thoughts, and the content as the book emerges. Onward!