Information for social care professionals

What is PDA?

Pathological Demand Avoidance (PDA) is best understood as a profile on the autism spectrum – for more information please see About autism & PDA.

It is important for social care professionals to have PDA on their radar, because individuals with this profile of autism and their families are particularly vulnerable to being misunderstood.

Independent social worker Cathie Long talks about PDA in an article for Community Care. Here, she explains:

Whereas some individuals have an existing diagnosis or multiple diagnoses, in other cases they have no diagnosis at all. Whilst all cases are unique, there’s one thing that all these individuals seem to have in common – traditional parenting or conventional behaviour strategies, even those recommended for autism spectrum disorders, don’t work. Parents often tell me that their local authority has recommended they attend a weekly parenting course so they can learn to set appropriate boundaries and manage their children more effectively. These efforts are sadly often counterproductive and futile. During my involvement with these children and their parents, or these adults and their families, when their needs are re-assessed, their presentations are often found to be best described by a PDA profile of autism.

In my experience, the key to supporting parents who have a child with PDA is for professionals to really start to understand the PDA presentation rather than requiring parents to repeatedly engage in parenting courses to learn and relearn parenting approaches which will not work.

My experience of supporting individuals with a PDA profile of autism has taught me to listen to what people tell me rather than engaging in an assessment of their care and support needs with preconceived ideas about what to expect.

For further information about how PDA may look at school, and about attendance difficulties, please see Information for education professionals.


Masking

Some autistic people are very adept at masking, and this is very common with PDA. Masking means that people may be able to hide or ‘hold in’ some of their differences/difficulties in certain environments or with certain people. Significantly, this means that challenges reported in one setting (often home) may not always be seen in others (such as school or other settings). This can and does lead to misunderstandings.

For further information about masking, please see Children who ‘mask’ or ‘camouflage’ their Autism and It’s not only girls who can mask written by Consultant Clinical Psychologist Dr Judy Eaton, Camouflaging in Autism by Frontiers for Young Minds and Different behaviour between school and home by the National Autistic Society.


Good practice & helpful approaches

Believing, supporting and working closely with individuals and families is key to successful outcomes for people with a PDA profile of autism.

Key to this is a genuine understanding of the helpful approaches for PDA – please see:

  • ChildrenHelpful approaches – this page explains what works with PDA and how this turns parenting norms upside down. Our PDA Panda ambassador is also a useful introduction to helpful approaches for PDA.
  • AdultsSelf-help, coping strategies and therapies for adult PDAers – these suggestions were assembled from a variety of first-hand accounts and the lived experience of adults diagnosed or self-identifying as having a PDA profile. This article in Care Management Matters highlights how to avoid misunderstood PDA presentations and lack of awareness/training leading to poor outcomes for adult service users. Our Keys to Care resource is relevant to all, but particularly so for people in in-patient settings. Ben’s story is a best practice example of a community care placement for a PDA adult.

Cathie Long’s article also covers the issue of Fabricated and Induced Illness (FII) and how parents of children with an unrecognised PDA profile of autism may be particularly at risk of unfounded concerns – for more information about identifying whether PDA may help to explain otherwise perplexing presentations, please see information for healthcare professionals.

PDA-related suggestions for inclusion in healthcare passports also includes useful information and helpful approaches.


Benefits of understanding the PDA profile

All research points to early understanding of strengths and needs, together with appropriate support, being key to positive long term outcomes.

We were increasingly perplexed by the complex presentation of one of our service users and our team’s inability to meet her needs despite our very best efforts. Whilst Sarah doesn’t have a formal diagnosis, following PDA training we were able to devise some unique approaches that have been highly effective. Using these approaches is the difference between Sarah being able to live in her own home and being held in a secure hospital – Sarah’s social care manager

Please see Benefits of understanding the PDA profile for more information.


Further information

For further information please see our Family and Adult Life sections and our Resources directory. Our What is PDA? booklet is a helpful introductory guide to the PDA profile as well, and please don’t hesitate to contact us.