Self concept in people with Williams syndrome and Prader-Willi syndrome.
Let the person talk; the way they describe themselves tells you which domain—social or physical—needs your first intervention move.
01Research in Context
What this study did
The team talked with people who have Williams syndrome and Prader-Willi syndrome.
They asked each person to describe themselves in their own words.
The goal was to see how the two groups think and talk about themselves.
What they found
People with Williams syndrome gave longer answers.
They used more social words like “friendly” or “helpful.”
People with Prader-Willi syndrome used fewer words and talked more about their bodies or daily actions.
Teens in both groups focused on looks and sports, while adults spoke more about feelings and friendships.
How this fits with other research
Lough et al. (2016) later showed that adults with Williams syndrome rate their own social risk lower than their parents do. This matches the rich social self-talk seen in Plesa-Skwerer et al. (2004); the same group that brags about being “popular” may not notice danger.
Davison et al. (1995) found that youngsters with Prader-Willi syndrome score low on extraversion. The short, body-focused self-talk in Plesa-Skwerer et al. (2004) lines up with that quieter, more irritable style.
Cheong et al. (2013) warned that most self-concept tools lack solid proof for kids with cerebral palsy. Daniela’s open interview avoids that problem; it lets the person speak freely instead of forcing boxed answers.
Why it matters
When you assess either syndrome, give time for free talk. Rich answers from a Williams client can guide social-skill goals, while brief, concrete answers from a Prader-Willi client can steer you toward visual supports and clear behavior plans. Use the same open prompt—“Tell me about yourself”—and note whether the story is social or physical. That quick check shapes targets, safety plans, and parent coaching.
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02At a glance
03Original abstract
This study explored self concepts in matched groups of adolescents and adults with Williams syndrome (WS) and Prader-Willi syndrome (PWS), using Damon and Hart's semi-structured interview. The main findings were that the WS participants were more productive in their responses to the interview, providing more self characteristics. The WS group also used more social and psychological categories in describing their self concept, and their responses were in general at a higher level than the responses for the PWS group. There were significant age-group differences, with the adolescents offering more self descriptions that were coded as physical and active, whereas the adults gave more social and psychological responses. Different themes were emphasized in the interviews from the two groups. These themes reflected the distinct phenotypes associated with these disorders, the participants life experiences, and their overall attitudes toward their syndrome.
Research in developmental disabilities, 2004 · doi:10.1016/j.ridd.2003.05.003