Outcome in adult life for people with Williams syndrome-- results from a survey of 239 families.
Adults with Williams syndrome stay stuck without services, but steady teaching and family teamwork can keep skills rising instead of stalling.
01Research in Context
What this study did
Howlin et al. (2006) mailed a long survey to 239 families who have an adult with Williams syndrome.
Parents answered questions about jobs, daily living skills, health, and help they get from services.
The goal was to see how independent these adults are after school years end.
What they found
Most adults with Williams syndrome had no paid job and needed help with basics like cooking or money.
Many also had extra health or mental-health problems.
Families said adult services were hard to find or simply missing.
How this fits with other research
Elison et al. (2010) looked at similar adults and saw stable or rising skills up to age 55. The two studies seem opposite, but Sarah’s group was smaller, tracked the same people over time, and counted any progress, while P et al. took one gloomy snapshot.
Brawn et al. (2014) unpacked the picture: adaptive skills in Williams syndrome vary a lot, and warm, active families boost scores. This helps explain why some adults in Sarah’s study looked better.
Amore et al. (2011) surveyed adults with Down syndrome and found the same post-30 drop in work and activity, showing the problem crosses diagnoses.
Why it matters
For BCBAs writing transition plans, the takeaway is clear: assume independence will not happen without planned, long-term support. Build job-site scripts, self-care routines, and caregiver training before age 22. Re-assess yearly; skills can inch up if you keep teaching. Use Gabrielle’s tip—loop the family into every goal because their level of involvement predicts adult success more than IQ scores.
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02At a glance
03Original abstract
BACKGROUND: Although there has been considerable research into the genotype and phenotype of Williams syndrome, there have been relatively few studies of long-term prognosis. As a preliminary to a more detailed investigation of adults with Williams syndrome, a parental questionnaire was distributed to members of the UK Williams Syndrome Foundation, focusing on areas of skill and difficulties in adult life. METHOD: A postal questionnaire was distributed to all members of the UK Williams Syndrome Foundation who had a son or daughter aged 18 years or over. The questionnaire covered issues related to the physical and mental health of the adults with Williams syndrome, together with questions about educational and employment status, self-help and independence skills. RESULTS: Out of a total of 290 questionnaires distributed, 239 were returned (82% response rate). The data highlighted the continuing high rates of physical problems in this group and apparent increases in rates of mental health problems with age. Parents also expressed their concerns about the lack of adequate support and care. Educational and employment attainments were generally low and self-help skills were relatively poor. DISCUSSION: The findings highlight the need for far better understanding of conditions such as Williams syndrome among professionals working in adult services and the need for more adequate support from educational, health and social services.
Journal of intellectual disability research : JIDR, 2006 · doi:10.1111/j.1365-2788.2006.00775.x