The challenge of detecting adverse events in adults with autism spectrum disorder who have intellectual disability.
Electronic charts miss most drug side effects in heavily medicated adults with ASD and ID, so add your own weekly behavior and health checks.
01Research in Context
What this study did
Ballester et al. (2022) watched the electronic charts of 83 adults with autism and intellectual disability. All were on many psychotropic drugs. The team counted how many bad drug reactions the records showed.
They wanted to see if routine chart review catches side effects in this high-risk group.
What they found
Only 64 adverse events were logged for the whole group. That is less than one event per person.
The low count is not good news. It means most side effects were missed. Heavy drug use plus few reports equals big under-detection.
How this fits with other research
Yamashiro et al. (2019) already showed that adults with ASD plus ID get more psychotropics than peers. Pura’s team now shows we barely track what those drugs do.
Soto et al. (2024) give a fix. Their emotional-development assessment cut antipsychotic doses in the same population. Fewer drugs mean fewer hidden side effects.
Mahé et al. (2025) add a warning. They found that epilepsy and severe behavior predict polypharmacy. Combine all three papers: high-risk adults get many drugs, charts miss the harm, yet we have tools to reduce load and monitor better.
Why it matters
If you support adults with ASD and ID, never trust the chart alone. Ask about drooling, fatigue, new tics, or sudden behavior change. Run a short checklist each month. Pair your findings with medical staff and you will catch problems early.
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02At a glance
03Original abstract
Adults with autism spectrum disorder (ASD) and associated intellectual disability (ID) take a high number of different psychotropic drugs simultaneously. Nowadays, little is known about this multidrug pattern efficacy and safety. The present study has endeavored to fill this gap creating a local pharmacovigilance system. A 36-month, retrospective and prospective, observational, and multicenter pharmacovigilance study was carried out in adults with ASD and ID (n = 83). Information regarding ongoing medications (polypharmacy: taking simultaneously >4 drugs; safety profile: adverse events' number, adverse drug reactions' number, and affected system; and observed-to-expected [O/E] ratio using the summary of product characteristics), and current diagnoses were recorded. A median of four ongoing medications per participant was registered, half of the sample was under polypharmacy regimen. Regarding all ongoing medications, 50% were antipsychotic drugs, and 47% of participants had >1 antipsychotic prescribed. In contrast, only 64 adverse events were identified from electronic health records, mostly due to risperidone. Half of them were related either to nervous or metabolic systems, and almost a third were not previously described in the corresponding drug summary of products characteristics. Extrapyramidalism, gynecomastia, hypercholesterolemia, and urinary retention were some AEs that occurred more frequently than expected (O/E ratio > 6 times) according to our data. The highest O/E ratio scores (>120 times) were for hypercholesterolemia and rhabdomyolysis caused by valproic acid. According to the number of adverse events and adverse drug reactions reported in electronic health records locally and nationally by clinicians, we need to increase awareness about medications safety. LAY SUMMARY: A 36-month study in adults with autism, ID, and polypharmacy (>4 drugs) was done to investigate drug safety on everyone. A median of four medications per person was registered, half were antipsychotic drugs, and 47% of participants had >1 antipsychotic medication simultaneously. Only 64 adverse events were identified from electronic health records, mostly due to risperidone. Half of them were related to nervous or metabolic systems and a third were not previously described in the drug information sheet.
Autism research : official journal of the International Society for Autism Research, 2022 · doi:10.1002/aur.2624