Longitudinal Measures of Community and Social Participation in Young Adults with Autism

Background:

The frequency of Autistic Spectrum Disorders (ASDs) has tripled in  the last three decades.  Children diagnosed with an ASD during childhood have persistent disability and less favorable outcomes in developmental and psychosocial domains as they move into adulthood.  They often demonstrate poor maintenance of social relationships and remain highly dependent on caregivers for support.  Despite efforts to improve adult outcomes for individuals with Autism Spectrum Disorders, few studies have longitudinally described community and social participation in this population during their transition from childhood to adulthood.  Available studies are limited by small sample size or are not longitudinal in design.  These are essential elements of any study whose goal is to better characterize social and community supports needs in this population.

 Objectives:

• To examine and describe the frequencies of community and social life participation in a population based sample of children with Autistic Spectrum Disorders as they move into adulthood. 
• To determine the individual, family, and school characteristics associated with social and community participation as this population transitions into adulthood.

 Methods:

This study is a secondary data analysis from the National Longitudinal Transition Study 2 (NLTS2), a national prospective cohort study funded by the US Department of Education. The NLTS2 followed a representative sample of students receiving special education between the ages of 13 to 16 years old who were in at least 7^th grade at commencement of the study on December 1, 2000. Participant information was gathered prospectively from parents, teachers, principals, school records, and students themselves and compiled into five waves of data during their transition into adulthood. This analysis will assess data from waves 1 (13-18 years), 3 (17-22 years), and 5(21-26 years). The frequencies of social and community participation at each Wave, as measured by the number of an individual's structured group activities as well as other proxy measures of social participation, will be evaluated. Child, family, school, and community characteristics associated with higher levels of community and social participation will be determined.

 Results:

We will document the longitudinal social and community participation of a nationally representative sample of persons with ASD.  A model describing  the associations between child, school, family, and community  characteristics and levels of social and community participation in young adults with ASD will be presented. 

 Conclusions:

A better understanding of the factors influencing social and community participation among young adults with autistic spectrum disorders is needed.  This information has potential implications for program and public policy aimed at optimizing the life experiences of young adults with ASD.