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Clare Truman has been teaching autistic children for many years and is a specialist in Pathological Demand Avoidance (PDA). She runs the Spectrum Space to support autistic children and young people who are finding it difficult to access education. Specifically, she provides distance learning programmes for students as an alternative to school, and offers consultancy and training to school staff and families. She is also an author of a book on PDA!
What is your connection to autism?
My younger brother is autistic, so it was through growing up with him that I first learnt a bit about autism. When I became a teacher, I knew that I wanted to work primarily with autistic children and young people and I have been teaching autistic students for ten years. I am also studying (very slowly!) for a PhD at the Centre for Research in Autism and Education at UCL London.
Could you tell us what PDA is? (What are the characteristics? Is it a diagnosis? Is it a form of autism? Are people with PDA autistic?)
PDA stands for Pathological Demand Avoidance and is often considered to be a profile on the autism spectrum, however this is not universally accepted. In fact, although the majority of my work and research is centred around PDA, there is still so much that we don’t really know about PDA at the moment that it is difficult to answer questions about PDA in a definite way.
Our best understanding so far is that PDA individuals (who often call themselves PDAers) share characteristics with other autistic people such as differences in social communication and interaction or sensory differences but also avoid everyday demands (including things they enjoy or want to do) to an extreme extent, often using social strategies to do so. They also have a need for control which is thought to be anxiety related. You can find out more about the characteristics of PDA here: About autism & PDA – PDA Society.
Diagnosis practices vary across and between countries. In the UK, where I work, the most common way PDA is identified is as a description alongside an autism diagnosis. For example, an individual may receive a diagnosis letter that says they have “Autism with a PDA profile”. PDA is not in any of the internationally recognised diagnostic manuals but is increasingly being identified by clinicians during autism assessments even though there are some clinicians, researchers and advocates who argue that it is not an autistic profile. There is still lots of controversy surrounding PDA.
What is your approach to PDA?
I once read a summary of PDA written by self-advocate Harry Thompson who described it as “an instinctual desire to be free” (Thompson, 2019) and I really like that description. Freedom is really important to every PDAer I have ever met and I really respect that desire for freedom.
I think that creating an environment that allows maximum freedom makes life easier for PDAers. So, for example, when I am working with teachers in schools I encourage them to allow their PDA students to design their own learning projects to give them the freedom they need to succeed in their learning.
You have worked as a teacher in both mainstream and special education schools. What is your advice for the parents who are considering which education type would be a better fit for their children who are autistic and/or have PDA?
I think there are pros and cons to both mainstream and special education schools. Special education schools often have access to more training and resources and also a higher staff to student ratio which can be really supportive for autistic students with or without PDA. However, sometimes mainstream schools have access to more curriculum specialists and curriculum resources than special schools and can often offer a wider range of curriculum subjects at higher levels.
I think more important than whether the school is a mainstream or special education school is the attitude of the staff and particularly the senior leadership. If the senior leaders prioritise meeting individual needs then any school can be the perfect school for an autistic or PDA student.
How does PDA present in adults? Do the challenges still remain in adulthood? Would there be any more or less challenges in adulthood?
The challenges do still remain in adulthood (as do the strengths) but sometimes people have developed more strategies to manage the challenges by the time they reach adulthood which can be beneficial. On the other hand, there is sometimes less support from statutory services for adults than there is for children so in that way it can be more difficult to overcome challenges that are faced in adulthood.
There are many PDA adults who are sharing their experiences and the strategies that they use to navigate everyday life with PDA. My favourite PDA authors (in alphabetical order by surname) are Sally Cat (www.sallycatpda.co.uk) Julia Daunt (www.memyselfandpda.com) and Harry Thompson (www.harryjackthompson.com).
Tell us about your recently published book!
I have just written a book about PDA entitled ‘The Teacher’s Introduction to Pathological Demand Avoidance: Essential Strategies for the Classroom’. Although aimed at teachers and school staff it would also be of interest to parents and others who support PDA children and young people. It is full of practical tips and ideas for how to make school more accessible for PDA children and young people including the sort of language to use, how to present learning in an inviting way and how to problem solve difficult situations with the child or young person. It is published by Jessica Kingsley Publishers.
Thank you, Clare for giving us helpful information on PDA. We hope you, readers, also found this insightful.