title: Self-perceptions from people with Down syndrome.
abstract: This study asks people with Down syndrome (DS), ages 12 and older, about their self-perception so that their information could be shared with new and expectant parents of children with DS. We analyzed valid and reliable survey instruments from 284 people with DS on the mailing lists of 6 non-profit DS organizations around the country. Among those surveyed, nearly 99% of people with DS indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they look. Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters. While 86% of people with DS felt they could make friends easily, those with difficulties mostly had isolating living situations. A small percentage expressed sadness about their life. In our qualitative analysis, people with DS encouraged parents to love their babies with DS, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without DS. Overall, the overwhelming majority of people with DS surveyed indicate they live happy and fulfilling lives.
authors.affiliation: Division of Genetics, Department of Medicine, Children's Hospital Boston, Massachusetts, USA. brian.skotko@childrens.harvard.edu
authors.forename: Brian G
authors.initials: BG
authors.lastname: Skotko
authors.forename: Susan P
authors.initials: SP
authors.lastname: Levine
authors.forename: Richard
authors.initials: R
authors.lastname: Goldstein
mesh_terms: D000293:Adolescent; D000704:Analysis of Variance; D004314:Down Syndrome / Q000523:psychology*; D004644:Emotions; D006801:Humans; D012649:Self Concept; D011795:Surveys and Questionnaires; D014481:United States