The most difficult thing for parents of PDA children and teens?

Pathological Demand Avoidance (or “Pervasive Drive for Autonomy”) is a nervous system disability.
While our children often have less trouble with social communication than their non-PDA autistic peers (not always, but I believe most of the time), and “may have friends, make eye contact and talk,” they are often viewed as being too “high functioning” for systematic and structural care.
I remember trying to get in-home caregiving support and we were told our son wasn’t “severe enough.” Yet minute-to-minute it was difficult to keep my two children physically safe in the home because of the extreme fight-flight behaviors and my son was barely eating enough calories to sustain him.
Because we are privileged, we were able to make many structural and lifestyle changes to support my son: We were able to pay for in-home caregiving support using an au pair and to get a service dog on a short timeline. We pay for a private school where he receives accommodations. We pay for health insurance that allows for coverage of non-behavioral based therapies that support his nervous system. Most families do not have the luxury to set up their own private systems of care.
Cumulative nervous system is disabling to these children and teens, and crippling to families, especially those who are lower-income, single-parent households, or from marginalized identities who frequently intersect with (and likely have fear of) child protective services and other institutional entities.
This is not a YOU issue.
It is not your CHILD’s issue.
This is a structural issue.
What I teach here does not negate these truths. Rather, it is radically accepting these current constraints (whether we like or agree with them) and then helping you find agency within them.
I believe the first step to more structural support is getting PDA recognized as an official diagnosis as soon as possible. Obviously, this needs to be part of a collective effort and a part of our mission here at At Peace Parents.
❤️‍🩹💪
Xo,
Casey
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✸Topics: PDA, Masking, Autism, Pathologicaldemandavoidance
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