Earlier this week we released The PDA Experience Report which is the first large-scale North American survey of PDA lived experience. Our hope is that these voices are no longer anecdotal or dismissible, but documented, analyzed, and impossible to ignore.
More than 2,000 North American respondents participated and together, these responses paint the clearest picture to date of what PDA actually looks like across childhood, adulthood, family life, education, work and treatments. Across all three surveys, respondents described a very consistent PDA profile.
The most frequently endorsed trait across all age groups was ‘resistance to being told what to do’.
Other highly endorsed traits included:
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Intense distress around demands and expectations
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Strong emotional reactions to perceived criticism or judgment
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Heightened sensory sensitivity
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Rapid emotional shifts
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Persistent anxiety and fear
One of the most sobering findings in the report is the impact PDA has when supports fail to fit.
Across surveys, respondents reported:
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Family breakdown, estrangement, and divorce
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Unhelpful and unsupportive information from providers
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Inability to regularly attend school or work
For PDA adults, nearly 40% reported family breakdown, 44% reported estrangement, and over half reported financial hardship. These outcomes are not inherent to PDA—they are consequences of systems that escalate pressure instead of reducing it.
As one respondent shared, “PDA-informed family strategies have been highly beneficial to our PDAer and our PDA family.” The problem is not that PDA-affirming approaches don’t work, it’s that they are rarely offered.
Nearly 90% of PDA children experienced school avoidance or refusal at some point. Many families turned to homeschooling, unschooling, hybrid models, or were unable to access education at all.
These are just a handful of the findings in this 50+ page report, and we hope you will take this report and share it wide and far. The more this information is spread, the more awareness and acceptance there will be of PDA.
📄 The PDA Experience Report is available now as a free digital download. (both the full report & an abridged key findings report):
https://learn.pdanorthamerica.org/collections/research
Whether you are a PDA individual, caregiver, educator, clinician, or policymaker, we invite you to read, share, and use this data to advocate for change grounded in reality—not myth.
Because we believe lived experience is evidence.
