Important note: This article contains information on a developing topic. PDA is not currently recognised as a diagnosis in Canada and is not included in the DSM-5 assessment criteria. The information in this blog is from emerging research done abroad, mostly in the UK. We strive to empower our community with vetted knowledge and provide a safe space for discussions on highly-requested topics like this one.
Pathological Demand Avoidance (PDA) is an autistic profile. PDA individuals share autistic characteristics and also have many of the ‘key features’ of a PDA profile. It is most widely recognized in the UK. PDA is best explained as an extreme avoidance of everyday activities, refusal of demands and challenges with authority due to severe anxiety. In the United States and Canada, PDA is still emerging and not widely diagnosed by professionals due to lack of awareness.
The PDA profile differs from typical autism traits, and the extreme avoidance extends to basic demands of everyday living, such as dressing, eating, and going to school. PDA is seen in both genders equally, although there are no estimates available as studies on PDA are lacking. Because PDA is still being studied, it is often misdiagnosed as other conditions that look similar on the surface. Missed diagnosis or misdiagnosis is especially common for autistic girls and women who fit the PDA profile (www.aspriscs.co.uk, 2022).
Core features of the PDA profile:
Resists demands of everyday life
Need for autonomy and control
Might resist preferred activities
Might be a passive, watchful observer in the first year
Use of fantasy as an escape or to avoid demands
Sensory differences, including sensory seeking or avoidance
Impulsivity or difficulty with self-regulation
Special interests, which may be a person, either real or fictional
Detailed pretend play and role play
Meltdowns or shutdowns from anxiety
PDA is best supported within a multi-pillar approach. Areas of need include sensory support, help with identifying emotions or managing anxiety, and support with speech and communication. Because preservation of autonomy is crucial for PDA individuals, approaches that support autonomy, agency, and self-advocacy are most helpful (PDAsociety.org.uk, 2023). Professionals who are often involved in the assessment and support of individuals with PDA include:
Speech and language therapists
“Learning about PDA completely changed my life. It explained why parenting was always so challenging with my son, why he is irritable over nearly everything, why he is no longer attending school (although he always got good grades), why he rarely wants to leave the house and why he avoids conversations about his life. I learned that this was not due to my parenting which I had really started to question, and that there are many others who struggle like my son. In order to provide a safe environment for my son, I have had to transform my parenting style. Learning how to create a low-demand lifestyle has been a game changer for us and I can see my son slowly reintegrating back into our family. PDA is not easy to live with, but understanding the feelings behind it really goes a long way. We all have so much more to learn.” – Anonymous community member
Ways to Support:
Provide a flexible and adaptable approach that is constantly in sync with the person’s anxiety levels.
Redirect your demand as a statement
Monitor stress levels and lower demands when needed
Create safe spaces when the individual becomes overwhelmed
Give plenty of time for morning and evening routines
Give choices to allow the individual more autonomy
Using declarative language is a positive way to lower demands. Using sentence starters such as “I wonder if we can…” “Let’s see if we can make something…” “I can’t see how to make this work…” “Maybe we could investigate…” “How do you want to help us today…” instead of direct language such a “It’s time for you to…” “You’ve got to…” “You need to…” “You must…” This can help alleviate anxiety and remove pressure from the individual.
If you feel you or your loved one may fit the PDA profile and would benefit from support, reaching out to professionals who are familiar with the profile is a good starting ground. Connecting with like-minded peers can also be extremely helpful. For autistic adults our Getting Together on the Spectrum Meet-up Group is a great place to start.
I am an ally and advocate for self-identified girls and women on the spectrum, who often go undiagnosed and without support. As a parent of a young child on the spectrum, I know firsthand the struggles and triumphs of this unique journey.
The teen years can be a turbulent time for families and a particularly challenging time for neurodivergent youth. From new social pressures to their changing bodies, autistic teens experience unique social, cognitive, and emotional changes. However, adolescents can thrive during their teen years when supported and safe.