Parental Attitudes on the Transition to Adulthood in Adolescents with Autism Spectrum Disorders and Other Developmental Disabilities

Background:   The transition from high school to the adult world presents challenges for any adolescent, but adolescents with autism spectrum disorders (ASD) face increased difficulties.  For example, only 15-25% of individuals with ASD achieve an adult outcome that includes employment, independent living, and a social network (Seltzer et al., 2004).  There is little research on what factors during the transition to adulthood may facilitate an optimal outcome in adolescents with ASD.  Parents of adolescents with ASD can provide a critical perspective on the transition to adulthood.  Transition barriers reported in previous studies included long waiting lists for vocational supports and residential placements and struggling to replace the often-extensive supports provided during high school (Hanley-Maxwell et al., 1995).  The current study seeks to further our understanding of the transition issues of adolescents with ASD by surveying parents of these adolescents as well as parents of adolescents with non-ASD developmental disorders.

Objectives:   This study had 3 objectives: (1) to describe parent-reported transition-related concerns; (2) to determine what services or interventions are being utilized or are desired; and (3) to examine future goals and expectations that parents have for their adolescents.

Methods:   Parents of adolescents with ASD and other developmental disabilities (e.g., ADHD, cerebral palsy, Down syndrome, and spina bifida) completed a questionnaire packet that included a newly developed parent questionnaire, the Adolescent Transition Survey (ATS).  The ATS obtained information about transition areas including general concerns, education, vocation, residential placement, independent living, recreation, transportation, and social skills.  Parents also completed a background history form and the Vineland Adaptive Behavior Scales-Caregiver rating scales.

Results:   Data collection is ongoing and the sample is expected to exceed 100 participants by May, 2011.  The current sample consists of 25 parents of adolescents with ASD and 18 parents of adolescents with other developmental disabilities.  Adolescents were predominately male (74%) and ranged in age from 13 to 17 (mean age = 15.3 years).  They represented a wide range of cognitive and adaptive functioning.  Preliminary analyses indicated that the following transition issues were significant concerns of parents of adolescents with ASD:  social skills and support (91%), academic skills needed for college or career training (74%), and money management skills (74%).  Parents of adolescents with other developmental disabilities identified social skills and support (44%), communication skills (44%), and independent living skills (28%) as significant concerns.  Additional analyses will be conducted to outline specific social-communication concerns, current utilization of supports, and expectations about educational, vocational, and independent living goals and supports.  Analyses will also explore whether parent identified concerns and goals are related to characteristics of the adolescent (e.g., demographics, adaptive behavior scores). 

Conclusions:   A better understanding of the transition needs of adolescents with ASD is needed to improve outcomes in this population.  This study will provide critical information about the concerns and barriers faced by parents of adolescents with ASD and further the development of more targeted and effective interventions.

Funding Sources: NIMH RC1 OD-09-003