Predictors of Changes in Daily Activity in Transition-Aged Youth with Autism

Background: Transitioning into adulthood is fraught with challenges for young adults on the autism spectrum. The fragmented nature of social and community services does not promote a seamless transition from youth to the adult service sectors. At the same time, community involvement of these transition-age youth (TAY), whether it be continued schooling, employment, or vocational training, plays a crucial role for meaningful outcomes later in adult life. Therefore, a greater understanding of the facilitators of continued community involvement during this period is warranted.

Objectives: In this study, we aim to identify the association between clinical need and service receipt with the stability of community involvement in young adults with autism that are transitioning into the adult service sector.

Methods: Caregiver survey data was taken from the baseline Canadian Autism Spectrum Disorders Alliance (CASDA) National Autism Needs Assessment Survey in 2014. Caregivers (n=330) that elected to be contacted again were sent the same set of questions in 2017 about sociodemographic factors, clinical need, service receipt and their typical weekday activity in the last four months. Three cohorts based on age were defined: (1) youth who were between 14-17 years of age at time 2; n=227) and thus not transitioning in the 3 year period, (2) transition-age youth (TAY), who were under 18 years of age at time 1 but aged into the adulthood at time 2, ending up between 18-21 years of age at time 2; n=48) and (3) adults who were past transition age at both time periods (25-29 y.o. at time 2, n=55). We compared patterns and predictors of having a typical structured daily activity during the week (either school, employment or volunteer activity) of the TAY group with both the younger and older cohorts who had not experienced this transition during the same time period. We then identified the service use and clinical need predictors of losing a typical structured daily activity over this transition period.

Results: Aside from age, the three groups did not differ with respect to rurality, gender, caregiver education level or income. Those in the adult group were less likely to live with family (67%) compared to the TAY (85%) and youth groups (97%). At time 2, only 1.3% of youth had no structured activity, compared to 17% of the TAY group, and 45% of the adult group. Of those that had a structured daily activity at time 1, a significantly larger portion of the TAY group lost a daily activity at time 2 (29.2%), compared to youth (6.2%) and adults (14.5%). We will present further data on what predicted losing services in the TAY group.

Conclusions: This research highlights that those transitioning to adulthood are a greatest risk of losing structured daily activities, and that once in adulthood (at least for individuals 25-29 years of age), many continue to struggle to obtain meaningful postsecondary engagement. These results can help guide the design of youth and transition age programs that will impact adult outcomes.