"We Are Mama and Papa Bears": A Mixed Methods Study of the Outcomes of Parents of Transition-Age Youths with ASD

Background:

The negative transition outcomes and transition experiences do not only impact students with ASD, but also their families because many individuals with ASD continuously rely on their caregivers’ intensive support, even through adulthood (Smith et al., 2010). A successful transition should be based on how well the family is doing and how parents perceive the transition process (i.e., family-centered approach; Neece et al., 2009). However, the transition process often fails to empower caregivers or measure family-level outcomes (Cameto & colleagues ,2004).

Objectives:

To provide a detailed account of the experiences associated with the transition process from a family-centered approach and answer three questions: (1) What are the stressors, external and internal support, coping strategies, and parent transition outcomes from a parent’s perspective?; (2) What are the predictors of parent transition outcomes?; and (3) Does resources and coping strategies mediate the relationship between stressors and outcomes as proposed by the ABCX model?

Methods:

An exploratory sequential mixed methods study was conducted:

Part 1–Qualitative study

Participants. 13 parents of transition-age youths with ASD were interviewed. The analysis of the qualitative data was guided by the thematic analysis approach (Daly, Kellehear, & Gliksman, 1997).

Part 2–Quantitative study

Participants. 252 parents of transition-age youths with ASD was recruited. According to the qualitative results generated by phase 1, four regressions and a structural equation model were developed to identify predictors that influence parent transition outcomes at indicator and structural levels.

Results:

Qualitatively, parents identified four stressors at three levels (family, parent, child), seven resources, five perception/coping strategies used, and five current/desirable outcomes. These themes were categorized using the ABCS model (see figure 1). These parents were angry, fearful, and worry, but were hopeful at the same time. They shared thoughts about the meaning of being a parent, aging, and their own dream. A father shared, “I am a prisoner.” Another mother said, “I just want to read a book on a beach.” These parents’ powerful sharing sheds light on their areas of need and gives us a deeper understanding of the intersection of aging and parenting an adult with ASD.

The quantitative study added information about the factors that impact parents’ transition outcomes to the literature. At the indicator level, two child-related factors (i.e., autism severity; mental health crisis/challenging behaviors), two parent-related factors (i.e., filial obligation; efficacy), two school related factors (e.g., transition planning quality; parent-teacher alliance), coping strategies (problem-focused coping; avoidance-focused coping; optimism) predicted at least one of the parents’ transition outcomes. At the structural level, optimism, emotion-coping strategies, and resources mediated the relationships between stressors and parental outcomes (see Figure 2).

Conclusions:

The current project provided insights into the complexity of the transition process experienced by parents of adolescents and young adults with ASD. The results also shed light on variables for further development and study of family-centered transition interventions. Parents are crying for help and support is far from sufficient. Clinical and research implications will be discussed.