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Empowering Self-Advocacy: A Participatory Action Peer-Mentor Model
Although increasing numbers of students with ASD are entering college (Van Bergeijk, et al., 2008), little research focuses on this population. Students with ASD often struggle with the transition to college and from college into the workforce (Adreon & Durocher, 2007; Kapp et al., 2011). The current study utilizes a participatory action approach to develop a peer-mentor intervention for college students with ASD. Peer-mentor interventions may help students with ASD negotiate college life and develop leadership skills (Adreon & Durocher, 2007; Caldwell, 2010).
Objectives:
1) Develop a peer-mentor intervention for students with ASD.
2) Evaluate if it meets participants’ needs.
3) Examine its applicability to other populations.
Methods:
During the spring, participants with ASD (N= 12) and other disabilities (N= 15) attended weekly hour-long social skills, academic and employment trainings. Social skills trainings were adapted from the PEERS model (Laugeson & Frankel, 2009).
Participants completed assessments (Social Responsiveness Scale [SRS], Spielberger State-Trait Anxiety Scale, Rosenberg Self-Esteem Scale, and a self-advocacy questionnaire) and participated in focus groups at the end of each term (fall post-tests will be conducted this December). Spring focus group data were coded for “self-advocacy” (students address concerns directly) versus “other-advocacy” (others address their concerns) and the perceived need for social skills training: kappa = 1.0.
During the fall, students with ASD (N=16) and other disabilities (N= 25) participated in hour-long weekly self-advocacy groups and optional one-on-one mentoring sessions. Self-advocacy training focused on self-knowledge, knowledge of rights, communication skills and leadership skills (Test, 2005); training was adapted from a curriculum developed by Valerie Paradiz (a self-advocate). Despite a need for self-advocacy training for autistic individuals (Shore, 2004; Wehmeyer et al., 2010), no published research documents self-advocacy trainings for this population and few self-advocacy interventions include leadership.
Results:
Social symptoms t (24) =2.82, p = .01 and anxiety t (24) =2.81, p= .009 decreased following spring participation.
Spring focus groups revealed that students often felt social skills training had not been needed (53% of responses). Many statements about advocacy were other-initiated (34%). Thus, we developed a self-advocacy intervention for the fall.
Fall self-advocacy assessments revealed that participants (regardless of diagnosis) had little knowledge of their rights and limited leadership skills. SRS scores were negatively associated with self-esteem r (31) = -.56, p< .001 and self-advocacy skills r (31) = -.76, p< .001. Many students defined self-advocacy as self-esteem.
Conclusions:
A participatory action approach revealed that many students with ASD or other disabilities were more interested in self-advocacy trainings than social skills trainings. Many reported having had to practice social skills in “resource rooms” in high school. Students desired help developing self-esteem (which may not be helped by social skills interventions: Wasico et al, 2013) and self-advocacy skills. Many did not know that adults with disabilities are protected by the Americans with Disabilities Act. Few had had opportunities to develop leadership skills. This approach to intervention addresses a key ethical challenge in autism research: ensuring that the research is relevant to people with ASD (Pellicano & Stears, 2011).