Prevalence, aetiology and comorbidity of severe and profound intellectual disability in Finland.
Severe or profound ID almost always comes with extra neurological or psychiatric diagnoses, so screen for the full range of impairments before you design any behavior plan.
01Research in Context
What this study did
Eugenia Gras et al. (2003) counted every person in Finland who had severe or profound intellectual disability. They used national health registers to find cases and then checked medical records for extra diagnoses.
The team wanted to know how common the condition is and what other problems these people have.
What they found
About 1 in every 750 Finns has severe or profound ID. Nine out of ten of them also had another neurological or psychiatric diagnosis.
In other words, severe ID almost never travels alone.
How this fits with other research
Schroeder et al. (2014) looked at the same Finnish registers but included mild and moderate ID and every age group. They showed ID prevalence rises from birth to middle age, giving the fuller picture that Eugenia Gras et al. (2003) started.
Wacker et al. (2009) studied people across all ID levels and found that each extra disability predicts lower adaptive skills and higher support needs. Their numbers back up the Finnish warning that more impairments mean more daily-life help.
Holburn (2001) reviewed sensory loss in ID and urged routine vision and hearing screens. Since Eugenia Gras et al. (2003) found most severe-ID cases have added neurological damage, checking senses is a logical next step you can act on.
Why it matters
When you assess a client with severe or profound ID, plan on multiple diagnoses. Build your behavior plan around vision, hearing, motor and seizure issues from day one. Partner with medical and therapy teams early so you do not miss a sensory or neurological barrier that could look like "non-compliance." Expect high support needs and write goals that work with, not against, the full package of disabilities.
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02At a glance
03Original abstract
BACKGROUND: The aim of the present study was to describe the aetiology, associated impairments and prevalence of severe and profound intellectual disability (SPID) in Finland. METHODS: The number of people with SPID in the catchment area of the Pääjärvi Centre for the Mentally Retarded, Lammi, Finland, (total population = 341,227) was calculated from the client register of this centre. Aetiological factors and background diagnoses for all subjects with SPID were analysed retrospectively. RESULTS: The number of people with SPID was 461, giving a prevalence of 0.13%. The aetiology of their SPID was genetic or congenital in 235 (50.9%) individuals, acquired in 89 (19.3%), genetic and/or acquired in 84 (18.3%), and unknown in 53 (11.5%) subjects. Out of the 53 individuals with an SPID of unknown origin, 48 (90.6%) had an associated impairment; the remaining five were the only members of the study group showing normal growth, and having neither dysmorphic features, physical abnormalities nor family members with ID. Out of the 461 subjects, 422 (91.5%) had between one and six associated impairments (total = 954), and the remaining 39 (8.5%) had SPID as their only impairment. Uncomplicated SPID was mainly of genetic or congenital origin, whereas all subjects with acquired encephalopathy had multiple disabilities. Speech defects, epilepsy and cerebral palsy were the most common associated impairments. CONCLUSIONS: Severe and profound ID almost always occurs concomitantly with other severe neurological or psychiatric impairments. The proportion of people with SPID described in the present study is similar to that found in Finland in 1966. The aetiology of SPID in the vast majority of cases is biopathological.
Journal of intellectual disability research : JIDR, 2003 · doi:10.1046/j.1365-2788.2003.00447.x