Social participation in a nationally representative sample of older youth and young adults with autism.

OBJECTIVE: To describe social participation and identify factors that affect it in a nationally representative sample of adolescents and young adults with autism. METHODS: Longitudinal cohort study using data from the National Longitudinal Transition Study-2. The World Health Organization International Classification of Functioning, Disability, and Health model was used with participation as the dependent category. RESULTS: A nationally representative sample of 725 youth with autism representing a weighted sample of 21,010 individuals was followed up for 4 years. The mean age at first interview was 15.4 years and 19.2 years at follow-up. More than half the youth at follow-up had not gotten together with friends in the previous year and 64% had not talked on the phone with a friend. Being employed or in secondary education was associated with the following factors (odds ratios): problems conversing (0.67), being teased (0.17), mental retardation (0.06), being above the poverty level (4.17), not using prescription medicine (4.11), general health status (2.30), and parental involvement with school (1.69) (all p < .001). CONCLUSIONS: Many adolescents and young adults with autism become increasingly isolated. Although each aspect of social participation had its own distinct pattern of factors related to it, the ability to communicate effectively, less severe autism, coming from an environment that was not impoverished and having parents who advocated were associated with more positive outcomes. These data provide insights into the factors that affect the participation of youth with autism during their transition years and should ultimately lead to interventions that could improve those transitions.

Youth with spina bifida and transitions: health and social participation in a nationally represented sample.

OBJECTIVE: To describe outcomes and identify factors that affect social participation in youth and young adults with spina bifida. STUDY DESIGN: Prospective data from a nationally representative survey of youth and young adults with disabilities were analyzed. The WHO ICF framework was used with participation as the dependent category and (a) body function/structure; (b) activities; (c) personal factors; and (d) environment as independent categories. RESULTS: A nationally representative sample of 130 youth with spina bifida (mean age 15 years) representing 5171 individuals with spina bifida was followed up for 4 years. The general health of the sample declined over the 4-year study period. Although each outcome using the WHO ICF model had its own pattern of factors that related to it, being Latino or not speaking English at home was negatively associated with each of the outcomes. CONCLUSION: The general health of individuals with spina bifida declines during adolescence and early adulthood. Social participation is affected by many factors, and each outcome appears to have its own set of factors that affect it. Future interventions to improve health, well-being, and social participation in adults with spina bifida will need to address factors in all domains.