Assessment & Research

Exploring co-occurrence of sensory, motor and neurodevelopmental problems and epilepsy in children with severe-profound intellectual disability.

Rensfeldt Flink et al. (2021) · Research in developmental disabilities 2021
★ The Verdict

Expect every child with severe-profound ID to bring extra diagnoses—screen them all.

✓ Read this if BCBAs doing intake or interdisciplinary planning for kids with severe ID.
✗ Skip if Practitioners serving only mild ID or single-disability caseloads.

01Research in Context

01

What this study did

Milgramm et al. (2021) pulled 20 children from a medical registry. All had severe to profound intellectual disability.

The team listed every extra diagnosis each child carried. They counted sensory, motor, epilepsy, and other brain-based problems.

02

What they found

Every single child had at least one added diagnosis. Most carried three to five.

Sensory loss, cerebral palsy, and epilepsy showed up again and again.

03

How this fits with other research

van den Broek et al. (2006) extends the picture. In 76 clients with profound multiple disability, 92 % also had visual impairment.

Ruddick et al. (2015) extends further. Children with severe ID plus behavior problems were 13 times more likely to need specialist help, yet most never saw one.

Jaffe et al. (2002) is a close predecessor. Their 2002 case series also found sensory plus behavior issues in every client, but they tested whether treatment helped.

McGarty et al. (2018) offers a conceptual replication. In a population sample, 92 % of kids with high autism traits had extra problems driving real-life impairment, matching the 100 % rate seen here.

04

Why it matters

If you assess a child with severe ID, plan on multiple diagnoses. Build vision, hearing, and epilepsy screens into your intake. Share the list with the medical team so nothing is missed.

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Add a quick sensory and epilepsy checklist to your intake packet for any new severe-ID client.

02At a glance

Intervention
not applicable
Design
case series
Sample size
20
Population
intellectual disability
Finding
not reported

03Original abstract

BACKGROUND: Severe to profound intellectual disability (SPID) is associated with multiple neurodevelopmental disorders and problems. In the most severe cases, the term profound intellectual and multiple disabilities (PIMD) is used. This study aimed to explore the co-occurring disorders and neurodevelopmental problems in a sample of twins where the proband had SPID. METHOD: Within a population-based sample of (30 312) twins, 20 individuals with a national patient register SPID diagnosis were identified. Parent telephone interview data (screening of neurodevelopmental disorders) and register data (APGAR, birth weight, intellectual disabilities, epilepsy, motor and sensory disorders) were gathered for probands and co-twins. RESULTS: The 20 individuals with SPID all had between one and five additional disorders or problems, with autistic traits, motor problems and epilepsy being the most common. Clear discordance was found for ID and all additional disorders and problems between probands with SPID and their non-SPID co-twins. CONCLUSION: Children with SPID almost never present without neurodevelopmental and/or sensory and/or motor comorbidities. This heterogeneity should be reflected in clinical routine and in research targeting individuals with SPID. The results support a previously suggested conceptualization of a S/PIMD "spectrum". Autism may be considered for inclusion in future elaborations of such a S/PIMD spectrum.

Research in developmental disabilities, 2021 · doi:10.1016/j.ridd.2021.104114