Feasibility of a Systematic Outcomes Assessment Protocol for Adults with ASD Participating in Community-Based Programs

Background: There is a lack of research regarding the services beneficial to transition-aged youth and young adults with Autism Spectrum Disorder (ASD) as they transition out of the school system and enter a more autonomous life stage. This population is at an increased risk for an array of lifestyle challenges and health problems. Fortunately, a variety of adaptive skills including self-advocacy and problem-solving are believed to contribute to improved quality of life and more positive outcomes. However, uncertainty on how to promote these skills remains. In 2007 a community-based center was established at a regional university in an effort to facilitate meaningful social experiences that support the development of the adaptive skills of self-advocacy, self-expression, self-regulation, problem solving, and teamwork among transition-aged youth and young adults with ASD. However to date, program effectiveness has not been comprehensively assessed.  

Objectives: The aim of the current pilot study is to determine the feasibility of a protocol developed to standardize the method for assessing the effectiveness of programs offered at a community-based center. This center aims to enhance the adaptive skills of transition-aged youth and young adults on the Autism spectrum. The data collected will be used to refine the assessment process we intend to use during a larger program evaluation/outcome study planned for Spring 2016.  

Methods: During the Fall 2015 pilot study, quantitative and qualitative data have been collected at a single time point from ten program participants and/or their legal guardians. Demographic and social impairment data were collected using the IAN Adult on the Autism Spectrum measure, the Social Responsiveness Scale, 2nd Edition, and the Hospital Anxiety and Depression Scale or the Anxiety, Depression, and Mood Scale. The dependent variables of self-advocacy, self-expression, self-regulation, problem solving, and teamwork were assessed with the American Institutes for Research Self-Determination Scale, the Adaptive Behavior Assessment System-II, the Emotion Regulation Questionnaire or the Emotion Regulation Checklist, the Behavior Rating Inventory of Executive Function, and the Youth Outcomes Battery-Teamwork Scale. Following quantitative data collection, participants were invited to participate in a semi-structured interview to provide qualitative feedback that will be useful for recommending tool modifications/adaptations in preparation for the forthcoming repeated-measures outcomes study.

Results: The research team is presently completing data collection and analysis, and will have conclusive results to report by January 2016. Because both quantitative and qualitative data is being collected and the questionnaires being used have proven to be reliable and valid in this population, we hypothesize that the pilot study will yield rich data regarding the effectiveness of the proposed assessment procedure.

Conclusions: Through this study, the research team aims to support the establishment of a systematic and rigorous method for assessing the effectiveness of a community-based program in developing adaptive living skills among transition-aged youth with ASD. We seek to do so in order to refine future programs that will better serve this population. The data collected during this pilot study will lay the foundation for future research that has more global implications for individuals with ASD and their families in the community.