Wondering about unusual behavioral challenges for your child? Could it be Pathological Demand Avoidance? Or another co-occurring mental health disorder? Or both?
Pathological Demand Avoidance is NOT recognized as an official diagnosis in the US, but rather a trait or profile of autism. The profile typically includes autism characteristics (though often more “hidden in plain sight” or stealth). However, NOT everyone with this profile has an autism diagnosis. Autism with pathological demand avoidance (PDA) makes daily life ever more complicated.
Typical characteristics of PDA:
- Most individuals have moderate to exceptional intelligence.
- Those with PDA tend to have an extreme need for autonomy or control even at a very young age.
- The avoidance or need for autonomy comes from “within” rather than having an outward ill intent.
- High anxiety and mood regulation struggles tend to be present despite the individual’s apparent intellect, communication, and social leanings.
- They may avoid everyday demands and expectations (including things that they want to do or enjoy and very basic self-care and educational tasks).
- They may be rejection sensitive and misunderstand others’ intentions.
- Communication may feel like a demand they want to avoid.
- Individuals tend not to respond to conventional parenting, teaching, or mental health support approaches. Parents and educators run out of tools and the child or young adult may escalate to unsafe patterns of behavior.
- Individuals have a HIGH chance of not accessing education and becoming self-supporting young adults.
- Aggression and self-harm can lead to crisis and the need for out-of-home placements.
(Adapted from PDA North America)
Parents of children with PDA-like profiles and co-occurring mental health disorders struggle with:
- Finding/receiving resources from regional centers, wrap-around services, and school districts.
- Aggression or self-harm in the home
- Feeling trapped and exhausted by the high needs of their older child or young adult, particularly one that on the surface, seems so “capable”.
- Not able to get their child to school or therapy.
- Guilt and shame for “raising a child that behaves like that”.
- Frustration with living with a child or young adult that “seems” capable or even gifted but is not accessing even the most minimal aspects of life.
- Fear of what may happen to their child if the avoidance, anxiety/depression, aggression, and maladaptive behaviors continue into late childhood and adulthood.
Despite the difficulties, an individual with a PDA-like profile may have positive qualities such as:
- Self-determined and true to themselves
- Often creative (not necessarily artistic but “outside the box” bright and quirky humans)
- Fiercely independent
- Strong sense of justice
- “Everyone is equal” in their minds
- Some may be sympathetic to others’ struggles when they are not in “fight-flight” and they may actually advocate for the rights of others.
(Adapted from Amanda Diekman)
Come and talk with other parents who share similar family dynamics.
The Autism with Pathological Demand Avoidance (PDA) support group meets on the 4th Thursday of each month at 7pm on Zoom.
The meetings are appropriate for those with school-aged children and young adults. Join us to learn more! Get more information about PHP support groups.