Assessment of Community Participation and Self-Determination As Outcomes of Transition for Youth and Young Adults with ASD

Background:

The Individuals with Disabilities Education Act (2004) mandates transition planning for all students with Individual Education Programs. But research suggests that the transition planning process need improvement (Cameto, Levine, & Wagner, 2004). National data of transition outcomes indicate adults with ASD have the lowest rate of employment, and the highest rate of no activities (Shattuck et al., 2012). As part of a larger study that used focus group methodology to identify issues of transition planning, two transition outcomes emerged as important to key stakeholders. Participants suggested that student self-determination and participation in the community are important in relation to transition and could indicate the quality of transition planning outcomes. Thus, two constructs – self-determination and community involvement – are critical skills that, if targeted during transition planning, have promise for improving post-school outcomes. Self-determination refers to self-advocacy that can be operationalized as setting goals reflecting personal interests and making choices (Wehmeyer & Field, 2007). Community involvement considers participation in structured activities (e.g., work), unstructured activities (e.g. leisure), and memberships. However, rarely are these aspects of transition planning considered (Carter et al., 2013).

Objectives:

To describe (a) student’s self-determination associated with transition planning and (ii) community involvement.

Methods:

A review of literature using the words “measurement of self-determination, measurement of community integration, transition, adolescence, and autism” was conducted to find instruments that captured these aspects of transition. Because no measures captured the constructs based on our needs, a measure of self-determination was developed that was comprised of 12 items (4-pt scale, 1 = strongly disagree to 4 = strongly agree) and covers three broad areas of transition meeting participation, goal setting and attainment skills and choice-making The transition participation consisted of 4 items (α = .84), goal settings and attainment skills consisted of 4 items (α = .88), and the choice making consisted of 4 items (α =.94). For community involvement, a survey of 33 items was developed that covered seven types of activities (leisure, daily life, social media, etc) and was assessed based on frequency of participation (rarely/never to several times each day). Data from 7 parents of children with ASD completed the survey. Frequency tables were generated for self-determination and community participation. Data are currently being collected on 18 additional youth as part of a randomized controlled trial (RCT).

Results:

Preliminary results indicate low self-determination skills for transition age youth with ASD for participating in the transition planning process (M = 2.33, SD = .72), for goal setting and attainment skills (M = 2.29, SD = .96), and for choice making (M = 2.37, SD = .95). For community participation, parents reported highest participation for watching TV (about daily) and lowest for participating in activities such as team sports. Only one parent reported involvement in extracurricular activities.

Conclusions:

Results from parent reports indicate moderately low levels of self-determination among their adolescents with ASD and low levels of community participation. We will have more data as part of a RCT by May.