Acute Medical Events in Adults with Profound Autism: A Review and Illustrative Case Series
Treat sudden irritability or pointing as possible medical pain in adults with profound autism until a doctor says otherwise.
01Research in Context
What this study did
Stagnone et al. (2025) looked at real hospital charts of adults with profound autism. They picked cases where the person arrived with pain or sickness that doctors first missed.
The team wrote short stories about each case. They showed how the adults acted differently instead of saying "it hurts."
What they found
Sudden biting, hitting, or pointing to a body part often came before a real medical problem. One adult kept slapping his chest; X-ray later showed pneumonia.
Doctors took longer to find the illness because the adults could not describe pain in words. Treat the behavior as pain first, the authors say, and rule out sickness before calling it "just behavior."
How this fits with other research
DaWalt et al. (2025) found the same hidden-signal pattern for constipation in autistic adults. Sleep loss or new aggression can be the only clue, so add constipation to your medical check when those signs appear.
Ballester et al. (2022) watched 83 medicated adults and saw only 64 adverse drug events recorded. Together, the three papers paint one picture: adults with autism and ID often show illness through behavior, and our charts capture only the tip of the iceberg.
The 2022 obesity review by G et al. adds weight to the risk: heavier autistic adults face more in-hospital death. Missed acute events may be one reason why.
Why it matters
Next time an adult client slaps his jaw or stops eating, think toothache first, not non-compliance. Run your medical rule-outs before you write a behavior plan. Share the checklist with nurses and caregivers so everyone watches for quiet signs of pain. Quick medical care can turn a week-long crisis into a same-day fix.
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02At a glance
03Original abstract
<i>Background</i>: Autism spectrum disorder (ASD) is associated with social-communication challenges that can hinder timely diagnosis and treatment during acute medical events (AMEs). The purpose of this report is to review the literature on medical comorbidities and AMEs in adults with profound ASD and highlight how healthcare teams can better understand atypical presentations of acute pain and discomfort in adults with profound ASD to reduce delayed diagnoses, delays in treatment, and ultimately improve health outcomes. <i>Methods</i>: The literature on medical comorbidities and AMEs in adults with profound ASD was reviewed using the following databases: PubMed, PsycINFO, and Google Scholar. The histories of three adults with profound ASD who experienced AMEs-specifically, appendicitis, nephrolithiasis, and eosinophilic esophagitis (EoE)-are described. The clinical cases were selected to illustrate the challenges inherent in diagnosing and treating AMEs in adults with profound ASD in the context of the review. <i>Results</i>: In Case 1, a 31-year-old male with autism was diagnosed with perforated appendicitis after his family noticed behavioral changes. In Case 2, a 36-year-old male with autism experienced intermittent pain from nephrolithiasis and communicated his discomfort through irritability and pointing. In Case 3, a 34-year-old male with autism exhibited atypical behavior due to pain from undiagnosed EoE, identified after years of untreated pain and multiple unsuccessful clinical procedures. <i>Conclusions</i>: This review and the illustrative cases demonstrate the significant role that communication barriers play in delayed medical diagnoses for adults with profound ASD during AMEs. Integrating caregiver insights and recognizing atypical pain expressions are essential for improving the accuracy and timeliness of diagnosis and treatment in this population.
, 2025 · doi:10.3390/brainsci15070740