I wanted to try something a little different this time around rather than just my ramblings, so I’ve interviewed Phil Christie. Phil is a Consultant Child Psychologist with experience of diagnosis and assessment of children across the spectrum as well as having been Director of an autism specific school and children’s services for 30 years. He has a background in research, training and publications, with a recent emphasis on those with a diagnosis of Pathological Demand Avoidance. Phil is now working mostly on an independent basis – you can find out more information about this HERE
I think you’ll agree with me that it’s a very interesting and insightful read. Please post any questions/comments for Phil in the comments, which you can find at the top of the post or you can click HERE, and I’ll be sure to pass them on. Thank you and enjoy. 😊
1. When and how did you decide that Child Psychology was the career path you wanted to follow and how did that lead to working within PDA?
While studying for my first degree at Lancaster University I was working on a voluntary placement at a large psychiatric hospital in Scotland. While there, I was asked to work on a daily basis with a five year old boy with autism. This was at a time when not all children were entitled to education and many of those with autism were placed in hospital. This child and the work that I did really caught my interest and I went on to train in Child Psychology at Nottingham University with John and Elizabeth Newson. I then became a close colleague and friend of Elizabeth’s over many years as I continued my interest in autism at Sutherland House. As part of this Elizabeth and I set up the Early Years Diagnostic Centre (which later became the Elizabeth Newson Centre). Elizabeth inspired and encouraged me in many things, one of which was PDA. Many children we worked with at Sutherland House and saw for assessment at the ENC showed this profile.
2. Do you think a proper PDA diagnosis is important? If so, to what extent?
I think a correct diagnosis of any developmental condition is very important in helping people reach a shared understanding of an individual’s needs. Of course every child or young person is an individual with their own personality and profile. The individual will, though, share many underlying characteristics that are common to others with the condition. A diagnosis should help to explain, or ‘make sense’, of why certain aspects of development and behaviour occur and give a context to them. A diagnosis should act as a ‘signpost’ to understanding and give suggestions and guidelines for better support. Without an appropriate diagnosis there is a danger that an individual is misunderstood and doesn’t receive support tailored to their needs.
3. In your opinion what are the ‘must have’ traits for a PDA diagnosis?
Elizabeth Newson’s original descriptions gave a list of features that she felt were the criteria for diagnosing PDA. I have said for a number of years that we now need to establish which are central and which are secondary (this is very similar to the way in which the original diagnostic criteria for autism developed). Clearly extreme (or Pathological) demand avoidance is one and this must be demonstrated in a range of ways, including what Newson described as ‘social manipulation’. Surface sociability, excessive mood changes and an anxiety driven need to be in control are also crucial. Ability in role-play and pretend was also highlighted by Newson. I think research is now showing us that we need to better understand the extent and nature of imagination in role-play both within PDA and the autism spectrum more generally.
4. What is your ‘favourite’ PDA trait?
I’m not sure that I can answer this – I like the creative thought processes and determination of many of the individuals that I have met!
5. Is it possible to be diagnosed with both PDA and Aspergers?
It’s possible that someone might give this as a diagnosis. I personally wouldn’t as it seems to suggest two separate conditions. Clearly, there are overlaps with the diagnostic profiles. Where this is the case I prefer to describe it as the person having an autism spectrum condition which shows elements of PDA and Asperger, or alternatively say they have an overlapping presentation.
6. PDA is now being recognised as part of the autistic spectrum in its own right rather than just a related condition. How much do you think that might help current and future PDA recognition and diagnosis?
I think it helps enormously as it now gives greater recognition and validity to PDA and brings it into to the realm of more autism practitioners and researchers. We still need to do more work on better understanding the essential components of PDA and what makes it distinctive.
7. I believe more research needs to be carried out – would you agree with this statement? If so, which areas need most focus?
Yes definitely but real progress has been made in the last few years and momentum is building. I think priorities include better understanding of the precise nature of the condition/defining criteria, particularly the area of social and emotional understanding. As I’m sure you are aware very little is known from a research point of view about pathways and prospects into adulthood. Evidence based work around educational strategies is also needed. The list goes on really.
8. Why do you think some professionals are so quick to dismiss PDA as a valid diagnosis?
Being dismissive is not a trait I admire in professionals! We all need to be open-minded and listen to other views. Professionals generally are much less dismissive than they were about PDA, partly because of the growing research base. At the heart of this, amongst some clinicians at least, is that PDA is not in the diagnostic manuals (DSM and ICD). Some areas/organisations have protocols about the diagnostic terminology that is used. The response to this can be very complex but there are two points that I often make. Other clinicians point out that the manuals are more concerned with research reliability than they are with clinical validity (ie descriptions that help make sense of an individuals presentation). We need to ask the question in diagnosis about what it’s for. The second point is that there are subsequent versions of each manual (DSM 5 and ICD 10 are current). Terminology and categorisation changes over time, in the light of research and clinical understandings. If we don’t start to use a term (however tentatively) until it’s in the manuals how can we start to do research which better helps to understand the validity of the concept?
I would like to say a massive thank you to Phil for taking the time to answer these questions and I hope you all enjoyed it and found it helpful. Please remember to share this. 👍
You can order your copy of “Understanding Pathological Demand Avoidance Syndrome In Children” HERE, which Phil Christie co-wrote.
Thank you so much for sharing. My mum had sent me this link. As usual when my own mother identies a struggle or sees her own adult child distressed about her wee people lol.. with no hesitation she would do her own research to see if there is any support or knowledge around the area of concern (Thank you mum).
On reading the story and interview with Phil I have to say I did become overwhelmed. Being a mum of three beautiful children, two out of the three I worry a little more about. One out of the two even more so. This posting I feel hit home and made great sense to me and I am so grateful.
I would like to make contact directly with Phil Christie to arrange consultation.
Again thank you, as I feel this has been a huge help.
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hi.i am a very desperate mum with a son with pda now 21.he was diagnosed by phil christie in 2003 at the early years diagnostic centre ravenshead nottingham.sadly my son ended up in a young offenders and now been moved to a psyciatric hospital and has been there nearly a year.i have fought all his life to get help and no one would listern.i am now fighting to get my son released via a tribunal.hospital are not taking into account he has pda as sadly i have lost his diagnosis since moving home.i have been so desperate to get a copy,i contacted the diagnostic centre two weeks ago who promised they would call me back .i have called and called all last week and no answer and no return of my calls.i have sent three emails this week to east midlands diagnostic centre and still no email back.i am so desperate for help to get my son home i am not sure which way to turn next.please can you help me or give me information on how to obtain a copy of my sons pda diagnosis.
thank you so much
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My 7 year old is asd high functioning and pda.i need help as not much awareness in Australia
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Hi
I have been working with someone who I think has Pda. I’m having many problems with services. I feel isolated in my work due to the lack of understanding from other professionals and service providers. I would really like to discuss the situation with someone who understands. Can you help?
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https://www.goodschoolsguide.co.uk/special-educational-needs/types/pathological-demand-avoidance
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Interesting post, I am learning more about PDA all the time.
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I’m glad you enjoyed it. You can sign-up via email so that you receive a notification when I post something new.
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If a diagnosis of PDA has been received & extra support was requires if local councils children’s services wouldn’t acknowledged that the condition exsist due to not being in DSM & ICD & fails to provide the support tailored to there needs could this not be discrimination & result in further damage down the line
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What an insightful interview, a great read, thank you Julia and thank you phil Christie for your constant commitment to raising awareness.
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Brilliant. I would just like to take this opportunity to say a huge Thank You to Phil Christie for all the work he has done, and continues to do with regards to helping those with PDA. Having heard him speak a few times, I would heartily recommend him to anyone, and the books are the perfect starting point for those who want to discover more. Thanks Julia for this fab interview! 🙂
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