Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study.
Sebastian Ck Shaw, Laura Carravallah, Mona Johnson and 4 others
PMID 37846479WHAT IT FOUND
Autistic adults described a 'triple empathy problem' where communication breaks down due to autism-specific differences, general doctor-patient mismatches, and medical culture.
Barriers like sensory overload and phone-only appointments led to healthcare avoidance and severe, self-reported adverse outcomes.
Key findings
01Participants identified five themes: early barriers (sensory/predictability), communication mismatch, doubt (self and doctor), helplessness/fear, and healthcare avoidance leading to adverse outcomes.
02The authors propose a 'triple empathy problem' where autistic adults struggle with non-autistic doctors due to bidirectional autism/non-autism differences, general doctor/patient agenda mismatches, and the alien nature of medical culture.
03Respondents reported serious adverse health outcomes, including ruptured appendices, undiagnosed tumors, and ectopic pregnancies, often attributed to fear of stigma, diagnostic overshadowing, or inability to navigate access barriers.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The study is qualitative and does not assess generalisability. It only includes the perspective of autistic patients, not healthcare professionals. Adverse health outcomes were self-reported and not verified by medical records. The data was collected via an online survey, which may bias results toward those with internet access and specific communication preferences. The explanatory model and 'triple empathy problem' are constructed by the researchers' subjective interpretation, grounded in their own insider status as autistic doctors.
Declared interests
The authors declared no financial support for the research. However, several authors are collaborating on projects funded by the John and Lorna Wing Foundation and NHS England, and some are leaders of Autistic Doctors International.
The easy way to misread this
Do not interpret the proposed 'triple empathy problem' or the explanatory model as empirically proven causal mechanisms. These are theoretical constructs derived from the authors' subjective interpretation of qualitative data, not findings from a controlled study testing these links.