Short Report: Exploring the extent to which Intellectual Disability is undiagnosed within children attending developmental paediatric clinics.
Routine clinic notes miss most kids with intellectual disability—use a short checklist when multiple health problems or parental unemployment appear.
01Research in Context
What this study did
Granillo et al. (2022) checked how well routine clinic notes spot intellectual disability in kids. They looked back at charts from a developmental paediatric clinic. No extra tests were given; they used only what staff had already written.
What they found
The files caught just 40% of children who truly had intellectual disability. Two red flags stood out: kids with many health problems and kids whose parents were unemployed. When both were present, the diagnosis was even more likely to be missed.
How this fits with other research
Oeseburg et al. (2011) show that children with intellectual disability often have extra conditions like epilepsy or cerebral palsy. Lauren’s team found the same pattern, but reveal that clinics still overlook the ID label when these extras pile up.
Sturm et al. (2024) extend the worry to schools: mild ID labels in Ontario are dropping. Together the studies paint one picture—kids with milder or complex forms of ID are slipping through the cracks in both clinics and classrooms.
Rieth et al. (2022) offer a fix. Their 15-minute ICD-11 behaviour checklist caught ID with excellent accuracy. Lauren’s poor hit rate from routine notes seems to contradict this success, but the difference is method: passive record review versus an active, short tool.
Why it matters
If you work in a clinic, don’t trust the file alone. Count the child’s health problems and ask about parent work status. When both raise flags, pause and screen again with a quick tool like the ICD-11 indicators. A five-minute checklist can rescue the 60% who are missed and open doors to services, funding, and tailored teaching.
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02At a glance
03Original abstract
Intellectual Disability is under-ascertained worldwide and is associated with greater physical and mental health difficulties. This research aimed to identify clinical features and characteristics of children with Intellectual Disability in a population of 126 6-18 year olds in mainstream school, attending paediatric developmental clinics. Intellectual Disability was defined according to the DSM-5 (deficits in intellectual and adaptive functioning, present during childhood). Measures used to assess this were WISC-IV IQ (score <70) and ABAS adaptive behaviour (score =<70). Clinical features were compared from a structured clinical records investigation and logistic regression explored which factors were associated with Intellectual Disability. Twenty-eight children (22%) met the criteria for Intellectual Disability. Five variables were associated with higher odds of having Intellectual Disability: no other neurodevelopmental diagnosis, multiple other health problems, prior genetic testing, maternal smoking during pregnancy, and parental unemployment. Routinely-collected paediatric data only predicted Intellectual Disability correctly in two out of five cases. Further research is needed to verify these findings and improve identification. WHAT THIS PAPER ADDS?: Many children with Intellectual Disability, particularly a milder version, still reach adulthood without a diagnosis, despite evidence indicating that diagnosis is generally well received by children and families, and that early intervention leads to improvements in outcomes. This short report, based on a small sample of 126 children aged 6-18 in mainstream school who attended a paediatric development clinic in South East Scotland, provides tentative data on the clinical features and characteristics which are associated with Intellectual Disability. This tentative evidence suggests that the combination of a) having multiple concerns and investigations, alongside b) one or both parents being out of work (which may be related to familial undiagnosed Intellectual Disability), should raise a flag for paediatricians to further investigate the possibility of an Intellectual Disability diagnosis among these children and young people. Further research with larger samples is needed to explore this more robustly, with the potential to create an algorithm to highlight to paediatricians cases requiring formal screening for Intellectual Disability.
Research in developmental disabilities, 2022 · doi:10.1016/j.ridd.2022.104359