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Content note: This episode includes brief discussion of suicidal ideation, mental health crises, school avoidance and truancy proceedings, and harmful behavioral interventions.
In episode 12, Marni and Chris are joined by Diane Gould and Melissa McKenzie of PDA North America to talk about the PDA Experience Report: the first large-scale study of PDA lived experience in North America. Nearly 2,200 caregivers and PDA adults responded in just a month. Diane is the executive director and founder of PDA North America and a licensed clinical social worker; Melissa is a clinical psychologist and research scientist. Both credit the larger team behind the report, including Marni, who served as a final reviewer.
Diane shares the origin of PDA North America, including the first conference held in Chicago the week before the world shut down in March 2020. The conversation then turns to what the report shows: the gap between caregiver perception and adult PDAer self-report (including underreported suicidal ideation), the near-universal endorsement of sensory sensitivity among adult PDAers, an 87.7% rate of school avoidance or refusal, and the financial hardship that shows up across the adult sample. They sit with the limits of the data, too—the whiteness of the sample, the mistrust of research in marginalized communities, and the real reasons the low-demand approach may not feel safe or accessible to families who don’t have the privilege to drop demands.
Diane and Melissa close by talking about where PDA North America is headed next: more qualitative work, in-depth interviews with people from communities the survey didn’t reach, and a continued effort to help families act on what the report shows.
PDA day (May 13) is this week, and PDA North America is hosting a full day of community programming.
Links mentioned in the episode:
* The PDA Experience Report
* PDA Day
* Episode 8: Mentoring PDAers With Trust and Curiosity with Amy Clark
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