Adults with Pathological Demand Avoidance Syndrome

Pathological Demand Avoidance Syndrome (PDA) is a life long condition, as are all Autism Spectrum Disorders. A child who is diagnosed with this condition will grow up to be an adult with the condition. If interventions are given early and the correct approach is used then the child may develop ‘coping strategies’ which allow them to manage their condition as an adult much better than when they were children. This is not the case for all people, even if they have received good support; but particularly if they have been diagnosed at a much later stage, have had little support or very negative experiences throughout childhood and adolescence.

A growing awareness of PDA is leading adults who are researching (perhaps in relation to finding information to help them support their children, but often just because they feel different and are not sure why) to identify with this condition. We are seeing increasing numbers of adults who suspect they may fit the diagnostic criteria for PDA and who wish to identify a diagnostic service for adults, or to seek appropriate support and advice on management strategies. This same trend is reflected in the numbers joining the facebook groups relating to PDA.
 
Only one research paper has been published to date, which relats to adults with PDA, and below is a link to the journal listing and abstract. (please be aware that to comply with Emerald Group Publishing's Copyright Policy we are unable to provide a link to the full journal article on our website; or to distribute the article to any person by post or electronic communication).

This research focuses on an individual case study of a young person in a secure facility, who had a history of behaviour and presentation which challenged the professionals working with her. She was diagnosed as an adult with PDA, and the existing information relating to strategies and guidelines was implemented with this young person. The incidences of outbursts, aggression etc were greatly reduced, and the authors recommended that the issues of diagnosis and post diagnosis support is resolved in order to better support adults living with, or suspected to have PDA. 
 

Blogs and Support Groups for Adults

Julia Daunt was diagnosed with PDA as a child, and is now in her 30's.  In her  blog ‘Me, myself and PDA’ she shares her thoughts and experiences; and also her plans to help raise awareness of PDA and to advocate for improved diagnostic pathways and better support for adults with this diagnosis. Julia also administrates a Facebook support group for adults with PDA. This is a closed group so membership must be requested. Julia has presented at the National Autistic Society's PDA conference in Cardiff in November 2014, and since then has given talks to different groups around the UK.  Julia has also written an article 'What is Pathological Demand Avoidance? An adult's perspective', which can be downloaded as a PDF by clicking here 

 

Please note the above links are external to the PDA Society web site, and the PDA Society is not making any recommendations nor is responsible for the content of these sites.