Autistic Adolescents' and Their Parents' Visions for the Future: How Aligned Are They?

Abstract

Introduction:

The expectations that individuals hold about the future can influence the decisions they make toward achieving their goals. Existing research suggests that parents of autistic adolescents hold expectations about the future that are significantly related to the postsecondary outcomes they achieve. However, less research exists about the adolescents' own expectations and the extent to which autistic adolescents and their parents agree about the future.

Methods:

We used a scoring procedure to “quantitize” semi-structured interview data about what 46 adolescent–parent dyads envisioned for the future of the autistic adolescent across three areas of adulthood (postsecondary education, employment, and living situation). Adolescents ranged in age from 13 to 19 years (85.1% male) and were able to participate in a verbal interview. We scored the dyads' interviews on the extent to which they agreed or disagreed about the postsecondary future of the adolescent, as well as whose expectations were higher (when they differed).

Results:

Fewer than half (37.0%–47.8%) of adolescents and their parents partly or strongly agreed about their visions for the future in each of the three areas. Only 17.4% of dyads partly or strongly agreed across all three areas, and 23.9% did not agree in any area. When adolescents' and parents' views differed, adolescents were significantly more likely to have a higher expectation across all three areas (p's < 0.01).

Conclusions:

Future research is needed to examine the differences in autistic adolescents' and parents' visions of the future, and to explore interventions to support families to work toward shared goals for the future. This study contributes to a growing body of literature emphasizing the importance of including the perspectives of autistic adolescents in research and for them to have an active and substantial role in their own transition planning.

Community brief

Why was this study done?

Research shows that the ways that autistic adolescents and parents think about the future can affect their lives in adulthood. When preparing for adult life, families make decisions based on what they expect and want to happen (their “expectations”). However, parent and adolescent expectations may not be the same. It is important to know how those expectations are similar and different.

What was the purpose of this study?

In this study, we set out to examine what autistic adolescents expect for themselves as they prepare for adulthood and compare those with the expectations of their parents. We focused on expectations in three areas of adult life: higher education, employment, and living arrangements.

What did the researchers do?

We interviewed 46 pairs of parents and autistic adolescents. We asked each parent and adolescent separately about their expectations for adulthood. Then, we evaluated the information to determine how much agreement there was between parents and adolescents.

What were the results of the study?

We found that parents and adolescents agreed and disagreed about the same number of times. We consider this a moderate level of agreement. Fewer than half of adolescents and their parents agreed about their visions for the future in each of the three areas (higher education, employment, living arrangements). Only a few pairs (17%) agreed in all three areas. About one-fourth of the pairs (24%) did not agree in any of the areas. In most pairs, adolescents expected that they would be more independent in adulthood than their parents did.

What do these findings add to what was already known?

Other studies have looked at parent and autistic youth perspectives, but this study directly compared their visions of the future based on descriptions in their own words. Moderate agreement between parents and children is seen in families of youth with and without disabilities. Our results show that autistic youth and families are similar to other families in this way. Earlier studies have also concluded that autistic adolescents think more positively about their futures than parents do. We measured that, and confirmed it was true for most of the included participants.

What are the potential weaknesses in the study?

This study allowed for a structured look at the qualitative interview text for 46 parent–adolescent pairs. However, we did not have enough participants to find out whether characteristics such as age or gender influenced parent–adolescent agreement. We also did not ask adolescent participants whether they agreed with their parents. We collected information through spoken interviews, which excluded participants with limited speech communication. Our participants were also similar in their racial, ethnic, or socioeconomic backgrounds. More research is needed with participants from different backgrounds.

How will these findings help autistic adults now or in the future?

This study provides evidence that parents and adolescents often have different expectations for adulthood. It is important that adolescents are included in discussions and planning about their future. Otherwise, providers may focus on parents' expectations, which may not fully support the adolescent. These findings also point to the need for studies helping parents and autistic adolescents to communicate about their goals and desires for the future.