Same Transition, Different Perspectives: Comparing Dyadic Interviews with Autistic Young Adults and Parents

Abstract

Introduction: The transition to young adulthood can be a turbulent life stage, and this is often magnified for autistic youth. Young adults frequently profess different goals and values than their parents. While there is some indication in autism research about how parents, and to a lesser extent, autistic young adults, feel about this transition, little research leverages dyadic interviews with both populations or has used this method with Black and/or low-income families.

Method: We conducted four sets of dyadic interviews with autistic young adults and their parents who live together.

Results: We identified three key themes that both groups found important to the transition: independence, structured transition, and interpersonal relationships. However, we found that how the groups conceptualized these themes were divergent and revealed differences in goals and values. Parents were more oriented toward long-term normative views of fulfillment, whereas young adults spoke about what was meaningful to them currently.

Conclusion: This work has implications for changes to how autism research will conceptualize the transition to young adulthood and how we can create better social opportunities for this population.

Community brief: Why is this an important issue?: Autistic adults are at risk for difficulties getting work and education, which can lead to them feeling alienated or unfulfilled. Most research on autistic people becoming adults is based on White people with more cultural and financial resources and does not ask autistic people themselves or their families with them. Research is needed to improve transition outcomes for these underresearched and underserved groups.What was the purpose of this study?: This study explored how autistic youth and their parents thought about and experienced the transition to adulthood out of an urban, low-resourced school district.What did the researchers do?: Researchers interviewed four parents and four autistic youth. Three families were Black, and one family was White and from a low-income household. All autistic youth had received special education services, needed support to transition to adulthood, and had finished high school 1 to 6 years before the study. The young adults lived with their mothers and received support from them for daily tasks. We interviewed the parents and then the youth. In some cases, youths joined parents' interviews or parents joined youths' interviews to provide help with remembering information or giving answers.What were the results of the study?: Researchers identified three themes. First, parents and youth thought about independence differently. Parents focused more on work and financial independence. Youth focused more on social aspects of work and having independence in daily activities such as shopping. The second theme was that youth and parents approached ongoing structured supports differently. Youth reported positive experiences with a range of services but did not discuss the need for ongoing supports like their parents did. Third, youth emphasized the importance of social relationships and opportunities to connect with peers through shared interests.What do these findings add to what was already known?: We learned that standard questions about transition may not reflect how autistic youth and their parents think about becoming an adult. Interviewing families coming out of a predominantly Black and low-income urban school district helped us to understand how these groups experience and think about the transition to adulthood, even though they did not use these identities as a logic for how they thought about young adulthood. This suggests that parent and youth perspectives differ in groups that are not usually well represented in research studies related to transition for autistic youth.What are potential weaknesses in the study?: This study only included a small number of youth and parents. These results do not represent all Black autistic youth or low-income autistic youth coming from urban school districts. Families who are less connected to services may have been less likely to hear about or take part in the study.How will these findings help autistic adults now or in the future?: These findings could inform the development of better interviewing approaches and research to address the needs of diverse autistic youth entering adulthood. This work could improve transition support. Parents, youth, support providers, and researchers may think about adulthood differently. Improved support could help build mutual understanding and coordination around youths' and their families' goals.

Keywords: autism; economic disadvantage; families; transition; young adulthood.