Gut Pain Is Not Behavior
They measured our pain, but only as a problem for others
A new study by Restrepo et al. (2025) has been published in Autism. It followed 475 children from ages 2 to 12 comparing autistic kids with their neurotypical peers. They tracked nine gastrointestinal symptoms: constipation, diarrhea, bloating, abdominal pain, pain on stooling, vomiting, difficulty swallowing, blood in stool and blood in vomit. Autistic children reported more symptoms and those symptoms tended to persist. The study also found that more symptoms lined up with higher scores on parent questionnaires for sleep, internalizing problems, sensory processing and repetitive behaviors.
Those are real findings. But how they are framed matters.
When Your Bellyache Gets Turned Into “Impairment”
The study describes GI pain mostly through “impairment” scales — CBCL, SRS, CSHQ, SSP. All of these are parent- or clinician-defined measures of difficulty. The result is that distress shows up only as problem scores, never as communication. Autistic children’s own reports are absent. Participatory design is absent. What could have been lived testimony gets flattened into data points about how burdensome the child appears.
The paper does note that behaviors can signal pain and urges clinicians to screen when children change patterns. That is useful. But the surrounding frame still reads those same behaviors as impairments. Gut distress gets translated into a higher “severity” score instead of being recognized as the body asking for care.
What the Study Gets Right
To be fair, the paper does not entirely erase context. It acknowledges communication barriers, interoceptive differences and provider gaps as reasons why GI pain often goes unrecognized. It explicitly recommends that clinicians check for GI problems when behaviors shift. These are important signals for better practice.
But the analytic core remains deficit-driven. Those acknowledgments appear in passing while the statistical models still equate “more symptoms” with “more impairment.” The result: recognition without reframing. Pain is noticed but still scored as dysfunction.
The Quiet Omission
Social determinants — cafeteria food practices, sensory-hostile environments and systemic medical gaslighting — are not studied. They remain invisible even though they shape who ends up with persistent stomach pain. So while the study validates that autistic kids’ pain is real, it leaves untouched the conditions that amplify it.
Rigor Without Imagination
Methodologically, the study is careful: physician-administered caregiver interviews, independent physician coding with consensus, exclusion of known GI diagnoses to focus on unexplained symptoms. That rigor is real. But rigor without imagination can still mislead. Without autistic-led measures or child self-report we learn how parents and clinicians interpret symptoms, not how autistic kids experience them. The absence is a choice, not an accident.
Questions With Teeth
- What if GI distress is a barometer of social friction, not just a biomarker of autism?
- How would the results change if autistic youth could report their pain directly rather than being filtered through impairment scales?
- What structural factors — from school lunchrooms to pediatric office practices — help explain why gut symptoms persist?
- If clinicians are told that “more symptoms = higher impairment,” how do we ensure they hear “treat pain” rather than “manage behavior”?
The Pain That Won’t Stay Silent
This study confirms what autistic families already know: gut pain is common and persistent. It rightly says that clinicians should screen and treat GI problems rather than dismiss them. That matters. But it also folds that truth back into the deficit script — pathologizing the child instead of interrogating the structures that amplify distress. The missing step is simple but radical: recognize autistic “impairment” not as broken behavior but as a signal of untreated pain in a system still unwilling to listen.