Abstract
The Pediatric Evaluation of Disability Inventory–Computer Adaptive Test-ASD (PEDI): Responsibility Scale targets limitations in managing daily life tasks. Adolescents (ages 14–22) with autism spectrum disorder without intellectual disability (N = 125) performed below expectations based on their intellectual level on the PEDI. Eighty-six percent of youth demonstrated borderline or significant delays in management of life tasks. If unaddressed, this challenge may create significant barriers to success in work and independent living.
Primary Author and Speaker: Elizabeth Munsell
Additional Authors and Speakers: Joshua Wenig, Hannah Cooper
Contributing Authors: Alexandra Gunther, Julie Russell, Jordan McNamee, and Samantha Martel
Taking over management of the tasks and responsibilities of daily life is a key feature of transition into adulthood. However, literature suggests that youth with autism spectrum disorder (ASD), including those without intellectual disability (ID), have poorer daily living skills compared to typically developing peers (Pugliese et al., 2014). Limitations in managing daily life tasks may contribute to the poor post-graduation outcomes seen in this population (Roux et al., 2015). The Pediatric Evaluation of Disability Inventory – Computer Adaptive Test [ASD] (PEDI-CAT-ASD): Responsibility Scale (Haley et al., 2012) targets this domain of function. The instrument operationalizes the shift in management of daily life tasks from caregivers to youth and thus differs from adaptive behavior instruments whose scales include a combination of specific skills and more independent self-management items. Because the Responsibility domain items require application of cognitive and social knowledge and skills, it may be especially useful to understand the challenges youth with ASD face in daily life. This study is a secondary analysis of PEDI-CAT-ASD data of adolescents (ages 14-22) with ASD without ID (n = 125). Part of the sample was from the PEDI-CAT-ASD development study and the remainder is from an ongoing study examining factors related to post-high school outcomes for youth with ASD. Parents completed the PEDI-CAT-ASD Responsibility domain reporting on their youth's level of responsibility for daily life tasks. Our aim was to describe the transfer of responsibility in this population across a period of significant developmental change. We hypothesized that adolescents with ASD without ID would demonstrate below average levels of responsibility in comparison to typically developing peers. We examined the distribution of norm-referenced scores and Fit scores to describe our sample. Results demonstrate that the PEDI-CAT-ASD is sensitive to the range of variation seen in this population. Overall, youth with ASD performed below what would be expected based on their intellectual level. T-scores for the sample ranged from < 10-51 (50 is average for age). 46% of the sample fell in the significantly delayed range (T-score < 30). An additional 40% of youth were in the borderline delayed range. Notably, 61% of youth age 18 and older were significantly delayed, compared to 38% of youth age 14-17, indicating that as youth grow older and expectations for responsibility increase, the discrepancy in performance compared to peers widens. The PEDI-CAT-ASD item maps identify the areas where youth are having difficulty. For example, an 18 year old with a T-score of 30 is not yet taking full responsibility in many common life tasks, including planning and following a weekly schedule or informing school or work when absent. Inability to manage daily responsibilities may impact an individual's success in adulthood. While our findings are consistent with other literature, the PEDI-CAT-ASD provides more detailed and precise information about the daily life tasks in which youth show difficulty. In comparison to traditional assessments (e.g. VABS-II), PEDI-CAT-ASD captures the young person's ability to coordinate multiple functional skills in unison to carry out tasks in their daily lives. The findings demonstrate that many youth with ASD without ID demonstrate significant delays in taking over management of daily life tasks. If this challenge is not addressed, it may create significant barriers to success in work and independent living post-high school.
Pugliese, C. E., Anthony, L., Strang, J. F., Dudley, K., Wallace, G. L., & Kenworthy, L. (2014). Increasing Adaptive Behavior Skill Deficits From Childhood to Adolescence in Autism Spectrum Disorder: Role of Executive Function. Journal of Autism and Developmental Disorders, 45, 1579–1587. https://doi.org/10.1007/s10803-014-2309-1
Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National Autism indicators report: Transition into young adulthood. Philadelphia, PA.: Life course outcomes research program. A.J. Drexel Autism Institute, Drexel University.
Haley, S. M., Coster, W. J., Dumas, H. M., Fragala-Pinkham, M. A., & Moed, R. (2012). PEDI-CAT: Development, Standardization, and Administration Manual. Boston: CRECare.