Boston University’s colonoscopy project: a rare case where autistic adults aren’t just “patients”
Autistic adults in the clinic, not just as patients but as partners
Most stories about autism and healthcare are written with us in the object position. We’re the problem to be solved, the reluctant patients to be nudged, the “noncompliant” bodies that medicine must tame. This one is different.
Boston University just announced a PCORI-funded project to improve colonoscopy access for autistic adults, and this time the leadership team includes autistic people who have actually lived the procedure.
The core of the project is simple but rare: instead of consulting us after the fact, they’re starting with an advisory board of autistic adults who know colonoscopy not as theory but as routine. Some of them navigate annual scopes, some have had to fight for basic accommodations, and all of them have felt the gap between medical guidelines and autistic reality. The project trains autistic adults in patient-centered research, brings GI doctors and caregivers into focus groups, and commits to co-creating a research agenda. Not a token consultation. An agenda.
That framing shift matters. The language here is access, not compliance. Barriers aren’t described as “autistic reluctance” but as sensory overload, communication hurdles, and anxiety that any honest patient would recognize. The project admits what most institutions still deny: that the system itself is hard to endure, and that autistic people avoid colonoscopies for reasons rooted in design, not defect.
But there are still questions. Colonoscopy is presented as the unquestioned gold standard, without asking whether some autistic avoidance reflects something more than lack of access. Mistrust of medicine is not always a flaw to be corrected; sometimes it’s earned. And while the advisory board is a genuine attempt at inclusion, the risk remains that only certain autistic voices—verbal, academic, already comfortable in advocacy spaces—will be heard. Those who are nonspeaking, under guardianship, or too exhausted to volunteer their labor may remain invisible.
Even so, the project’s methods are a step toward repair. Community-based participatory research is still too rare in autism science. Focus groups that put autistic and non-autistic perspectives in the same room are rarer still. And advisory boards with real framing power—where autistic adults help decide not just what’s studied, but how—are almost unheard of.
The question is what happens next. Will the work stop at the advisory board, its findings shelved after the grant cycle ends? Or will it ripple outward into hospitals and clinics, reshaping how medicine understands autistic consent, dignity, and endurance? For once, we are not only the subjects of study. We are the narrators of its frame. Whether that frame holds depends on who they keep at the table when the meetings end.