Parents' perceptions of functional abilities in people with Down syndrome

Abstract

A realistic assessment of the range of functional abilities found in people with Down syndrome (DS) may assist in counseling expectant parents. This study asked parents from the United States and the Netherlands to assess 11 functional skills of their sons and daughters with DS: walking, eating, speaking, grooming/personal hygiene, reading, writing, preparing meals, working at a job, going on dates, traveling independently, and living independently. We analyzed responses from 2,658 parents who have sons/daughters with DS of all ages. The majority of people with DS in the United States could walk by 25 months of age, speak reasonably well by 12 years, maintain their own personal hygiene by 13 years, and work independently by 20 years. By 31 years of age, 49% were reading reasonably well, and 46% were writing reasonably well. Approximately 30% could travel independently, and 34% were living independently. The results from parents in the Netherlands were similar for most measures. This normative data on function may contribute to anticipatory guidance and decision‐making. Furthermore, as parents and clinicians seek to assess the relative strengths and weakness of people with DS, resources and supports can be marshaled for those not meeting milestones at expected times.

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