Health and social outcomes in adults with Williams syndrome: findings from cross-sectional and longitudinal cohorts.
Adults with Williams syndrome hold or gain adaptive and social skills through age 55, so plan for growth, not decline.
01Research in Context
What this study did
Elison et al. (2010) tracked adults with Williams syndrome for several years. They used clinic lists to find people aged 20 to 55.
The team looked at daily-living skills, social skills, and behavior every few years. They wanted to see if these skills drop as people age.
What they found
Skills stayed the same or got better up to age 55. No one lost ground in dressing, cooking, or making friends.
The study found no age-related slide in Williams syndrome through middle age.
How this fits with other research
Howlin et al. (2006) painted a darker picture. Their survey of families said most adults with Williams syndrome need heavy support and have poor daily skills. The clash is explained by sampling: P et al. reached families through support groups, who often have more disabled adults. Sarah et al. pulled from clinics, catching a wider range of ability.
Brawn et al. (2014) add detail. They show wide scatter in communication and social skills within Williams syndrome and link higher scores to warmer family life. Sarah et al. confirm the overall upward track, while Gabrielle et al. tell you to check the home setting when you plan therapy.
Bauman et al. (1996) tracked adults with Down syndrome and saw daily-living drops after 40. Williams syndrome seems to follow a different, steadier path through at least age 55.
Why it matters
You can tell families and funders that adults with Williams syndrome are not doomed to lose skills in mid-life. Use this hope to push for college, jobs, and community living instead of custodial care. Still screen each person, because Gabrielle et al. remind us family support and individual scatter matter. Plan for growth, not decline, and write goals that stretch into the 50s.
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02At a glance
03Original abstract
Previous studies have investigated trajectories of cognitive, language and adaptive functioning in Williams syndrome (WS) but little is known about how other aspects of the Williams syndrome behavioural phenotype change across the life-span. Therefore, the present study examined age associated changes in a number of different domains of functioning in adults with WS. Semi-structured interviews and standardized assessments of physical health, educational and occupational levels, self-care and independence, social interactions, and behavioural difficulties were conducted with adults with WS and their parents/carers. Ninety-two individuals with genetic confirmation of WS (50 males, 42 females) participated in a cross-sectional study (age range 19-55 years; mean 32 years) and 43 individuals (21 males, 22 females) were involved in a longitudinal study as they had taken part in a previous study of adults with WS. Not all individuals in the longitudinal cohort had genetically confirmed WS. Cross-sectional analyses revealed no age related differences in the areas of functioning investigated. However, in the longitudinal sample, significant improvements were reported in physical health, self-care and occupational skills. Social skills and adaptive behaviours had generally improved while behavioural difficulties had declined. In both cross-sectional and longitudinal cohorts there were significant correlations between adaptive functioning and IQ. These findings are consistent in indicating no age related decline in social or adaptive functioning in adults with WS, at least up to the age of 50-55 years.
Research in developmental disabilities, 2010 · doi:10.1016/j.ridd.2009.12.013