While my son’s schooling took place at home through an online program, the program was offered through our public school district. He still had an IEP and we still worked closely with the school to support his needs.
Pathological Demand Avoidance (PDA), was first defined in the mid-1980’s as a kind of autism. The National Autistic Society describes it as an anxiety-based need for control, and that kids with PDA can be highly imaginative in how they avoid demands, including using social knowledge in their avoidance tactics.
However, PDA was not yet recognized by the DSM-5 in the U.S. as a developmental disorder.This meant the people we worked with in the school district either did not know about it or knew very little.
But most were happy to learn, especially when I framed it as a means of learning about and possible applying new strategies and tools to help with my son’s learning, even if we did not formally or officially adopt the PDA “diagnosis” in his paperwork.
I compiled a list for them of resources that I found helpful, ranging from basic overviews to in-depth professional articles.
The list below is not in any way a comprehensive or complete list, and everyday more valuable resources are being made available online:
This is a basic overview from the National Autistic Society in the U.K. – What is pathological demand avoidance (PDA)?
These are suggested strategies for home from the PDA Society in the U.K. – Building a framework of strategies
These are strategies for school from the PDA Society (though they may be difficult to implement them all in our current system in the U.S.) – Educational and Handling Guidelines for Children with Pathological Demand Avoidance Syndrome
This is a helpful, easy-to-digest booklet – Simple Strategies for Supporting Children with Pathological Demand Avoidance at School
This is a book that I found helpful – there are some strategies in it that are easy to implement both at school and at home (the link connects to my review of the book) – Understanding Pathological Demand Avoidance Syndrome in Children – A Book Review
Another book that comes highly recommended but that I have not yet read is this one – Pathological Demand Avoidance Syndrome – My Daughter is Not Naughty
This is a list of articles compiled by the PDA Society which are more technical and might be helpful to professionals – peer reviewed journal articles
The PDA Resource website is a comprehensive site with an incredible amount of information (including the materials listed above).
These are also PDA blogs and blog articles with terrific information from parents and autistics (fyi: some of this information is hosted on Facebook):