Preparing for the future: multi-stakeholder perspectives on autonomous goal setting for adolescents with autism spectrum disorders

Abstract

Purpose: Self-determination is linked to numerous positive outcomes including improved social inclusion and quality of life for adolescents with autism spectrum disorder. Autonomous participation in therapeutic goal setting is an important component of self-determination. This study examined perceptions of, and barriers to, autonomous goal setting as perceived by: (1) adolescents with autism spectrum disorder, (2) parents of adolescents with autism spectrum disorder, and (3) interdisciplinary professionals.

Method: Three focus groups (one with each of the key stakeholders) and one joint parent and child interview were conducted. All discussions were audio‐recorded, transcribed verbatim and thematically analyzed based on the methods outlined by Braun and Clarke (2006).

Results: A total of 7 parents (6 mothers, 1 father), 4 youth with autism spectrum disorder, and 10 professionals participated in the study. Three themes related to current experiences with goal setting emerged: (1) purpose, (2) barriers, and (3) types.

Conclusions: Currently, adolescents with autism spectrum disorder are rarely active participants in the goal setting process. This study provides novel data, from the perspectives of multiple stakeholders, about barriers, perceptions, and actualities related to autonomous goal setting for adolescents with autism spectrum disorder.

Implications for rehabilitation

• Adolescent participation in autonomous goal setting is an important component of self-determination.

• Rehabilitation professionals, parents, and adolescents with autism spectrum disorder identified similar barriers to autonomous goal setting.

• Adolescents with autism spectrum disorder described goals as short-term, concrete tasks, whereas parents perceived involvement in goal setting as a gateway to long-term self-determination.

• Rehabilitation professionals and parents acknowledged the benefits and advocated for increased involvement of adolescents with autism spectrum disorder in the goal setting process.

• Similar to the paradigm shift toward family-centered care, rehabilitation professionals need to shift to include the involvement and participation of individuals with autism spectrum disorder.

Keywords:

• Self-determination
• goal setting
• autism spectrum disorders
• adolescents
• qualitative

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

Dr. Hodgetts is supported by a PolicyWise Early Career Transition (New Investigator) Award. This project was funded through the generous support of the Glenrose Hospital Foundation Clinical Research Grant.