Profile of Skills and Symptoms in Transition Aged Youth with ASD

Background:  Outcome data for adults with Autism Spectrum Disorder (ASD) are poor, showing under-employment, reduced social engagement, high frequencies of co-morbid mental health issues and lower reported quality of life. Despite progress in assessment and treatment of skills deficits for young children with ASD, few have focused on defining the needs of transition-age youth, specifically to produce more successful outcomes into adulthood. Identifying and addressing the skill gaps relevant to adult life during the high school years, provides the opportunity to better utilize services available to adolescents and better prepare teens for the transition to adulthood.

Objectives: This study provides descriptive profile data of adolescents with Autism Spectrum Disorder, in order to better identify needs specific to transition to adulthood.

Methods:  As part of a larger, on-going project, adolescents aged 14-19 with ASD were recruited. Adolescents in the study did not have comorbid ID or active psychosis and were able to self-report. Baseline assessment data were collected. Adolescents completed the ARC Self-Determination Scale (SDS), The Intolerance to Uncertainty Scale (IUS), and a PROMIS profile scale (profile 49 or 43 dependent on age). A parent of the adolescent completed the Waisman Activities of Daily Living (WADL) Scale, the caregiver version of the IUS, and PROMIS proxy scales for Anxiety, Depression, Anger and Peer Relations (for individuals under 18). Currently 17 adolescents have completed the baseline assessments; however it is anticipated to enroll 60 individuals in the project by May, 2017.

Results:  Compared to means from a normed sample of adolescents, the individuals with ASD in this study reported lower mean scores on the SDS, particularly on the autonomy subscale (ASD M = 48.38, SD = 17.7, normed population M = 63.35, SD = 15.5, t = -3.42, p < .01). The autonomy subscale of the SDS was not correlated with the WADL; though the WADL scores showed age-related increases, similar to larger longitudinal studies. Parents rated their child’s IUS (M = 68.35, SD = 22.57) on average 27.7 points higher compared to the participant’s self-report (M = 50.53, SD = 18.9). Adolescent IUS scores correlated with adolescent self-report (PROMIS 49/43) of anxiety (r = .70, p < .01), and parent proxy IUS scores correlated with parent proxy anxiety scores (PROMIS subscale; r = .63, p < .05), however parent and adolescent IUS scores did not correlate with each other (r = .28, ns). Self-realization scores (related to measures of self-esteem) correlated to self-reported depression symptoms (PROMIS 49/43), r = -.81, p < .001.

Conclusions:  Adolescents with ASD scored lowered on self-determination measures compared to reported norms, which may provide insight into important skills areas to target among transition aged students with ASD. Also noticeable was differences between the adolescent’s reporting and parent proxy reporting. This may also be important to consider to gain more complete picture of the adolescent’s needs; current data show very limited involvement in IEP and service planning meeting by the adolescent with ASD, but instead parents and guardians speaking on their behalf.