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.

Introduction

As autistic people age into adulthood, many experience challenges and frustrations finding a satisfying adult life path.^1,2 Studies suggest that many autistic people and their families desire community employment, self-determined living arrangements, social engagement, financial security, quality of life, well-being, and happiness in adulthood.^3–7 However, evidence on autistic adult outcomes indicate that those goals are not often met. Review data show challenges in areas such as employment, independent living, and social participation.⁸ Autistic adults' reported quality of life is also lower than in the general population.⁹ However, each individual and their family may have their own perspectives about desirable adult outcomes.¹⁰ The transition to adulthood—beginning in adolescence—is a critical time when adolescents and their families often begin to think about and make preparations for adult life.^11–13

What individuals expect for their own futures (i.e., expectations) can influence their decision making, leading to differences in what ultimately happens.¹⁴ This relationship is supported theoretically by the Expectancy-Value Theory of Achievement Motivation (E-V theory) and in empirical work.^14–18 Kirby¹⁹ extended E-V theory to consider the role of parents' expectations in influencing the transition process for autistic adolescents. Using structural equation modeling with a nationally representative sample of autistic youth, Kirby found that parents' expectations during their child's adolescence acted as a significant mediator predicting their later postsecondary outcomes.¹⁹ Further evidence suggests that parent expectations for autistic youth influence transition preparation activities^20,21—clarifying the ways that parents' expectations can ultimately inform adult outcomes. However, the availability of evidence about parents' expectations does not imply that they replace the importance of adolescent expectations for the future. As the E-V theory posits, adolescent expectations play a critical role in determining their own efforts and choices related to preparing for their futures.^14,15

Existing qualitative and quantitative studies offer insights about the relationship between parent and adolescent perceptions during the transition to adulthood. Qualitative studies illustrate complex tensions in the parent–child relationship during the transition to adulthood²²; Cheak-Zamora et al.²³ identified that although both parents and autistic adolescents desire adolescent independence, parents may have more concerns about the transition to adulthood than autistic adolescents. A quantitative study also looked at the parent–adolescent agreement related to transition; a longitudinal analysis of 1940 students with a wide range of disabilities (including autism) suggested that the postsecondary expectations of parents and adolescents weakly-to-moderately correlated with each other.²⁴ Adolescents' expectations were consistently more independent (e.g., living in the community and earning enough to support themselves) than the expectations of their parents.²⁴ The authors also found that both adolescents' and parents' expectations predicted youth postsecondary outcomes. Specifically, adolescents' expectations were stronger predictors of their postsecondary outcomes in the areas of education and independent living, whereas parents' expectations were stronger predictors of employment and financial independence.²⁴ Thus, although they may disagree, both parent and youth expectations relate to future outcomes in different ways.

Disagreements between parents and youth about the youth's future may lead to confusion about goals and priorities during the transition planning process.²² According to studies of school transition involvement, parents are often involved in goal setting and decision making during the transition, whereas autistic youth participate infrequently.^25–27 Further, research shows that documented transition goals often do not align with the stated desires of autistic youth.²⁶ Thus, when there is disagreement, goals may rely only on parental or professional perspectives.²⁸ Meanwhile, evidence shows that youth require opportunities to make decisions and set goals for themselves to develop self-determination skills that are critical for adult life.^28–30

As described, studies show that both parent and adolescent expectations for the future influence postsecondary outcomes, yet autistic adolescents and their parents may have differing perspectives about the future. Prior qualitative studies have examined similarities and differences in how parents and autistic youth broadly discuss transition, and a prior quantitative study has specifically compared Likert scale ratings of future expectations from parents and youth with disabilities. However, no studies have compared and contrasted autistic adolescent and parent visions of the future in their own words (similar to how differences could present during discussions at home or during a transition-planning meeting). In the current study, we aimed at comparing visions for the future that autistic adolescents and their parents discussed in separate semi-structured interviews to assess: (1) how aligned their visions were in the areas of postsecondary education, employment, and living situation, and (2) whose expectation was higher across those same three areas.

Methods

The current study used semi-structured interview data collected as part of three different projects led by the same principal investigator in two U.S. states. We obtained Institutional Review Board approval from the University of North Carolina and the University of Utah.

Participants

Our analysis included interviews from 46 autistic adolescents (ages 13–19 years) and their parents. Two of the parents were fathers (4.3%), and the majority (95.7%) were mothers. We recruited participants through flyers sent to clinics and community organizations supporting autistic youth or their families. Inclusion criteria differed slightly across the three projects, but all participants had previously received an autism diagnosis, all had the speaking ability to participate in an in-person spoken semi-structured interview, and most anticipated receipt of a high school diploma. Two of the three projects focused on youth anticipating a diploma, since they often receive fewer transition supports³¹ and we aimed at developing an intervention to improve transition support. Prior publications provide additional details about recruitment and study criteria for the three studies (see also Supplementary Data, Supplementary Tables S1 and S2).^5,32,33 For the current study, we removed three sets of interviews from our dataset to ensure independence in the sample (removed one adolescent each from two sets of siblings [one selected randomly and the other due to missing data], and the first set of interviews from the one dyad who participated in two of the projects). Table 1 contains additional information about participant characteristics.

Table 1.

Participant Descriptive Information

Characteristic	n (%)
Adolescent age, mean (SD)	15.7 (1.3)
Adolescent gender
Male	39 (84.8)
Female	7 (15.2)
Adolescent race and ethnicitya
White	39 (84.8)
Black	4 (8.7)
Mixed race	3 (6.5)
Hispanic	4 (8.7)
Adolescent autism traitsb
Subclinical	4 (8.7)
Mild–moderate	18 (39.1)
Severe	24 (52.2)
Adolescent cognitive estimate,c mean (SD)	105.8 (15.7)
Household income
≤$29,000	5 (10.9)
$30,000–$79,999	17 (37.0)
≥$80,000	24 (52.2)

^a Ethnicity was asked separate from race, so total does not add to 100%.

^b Autism traits were classified by using the Social Responsiveness Scale (1st or 2nd edition).^34,35

^c Cognitive estimate was derived by using the Wechlser Abbreviated Scale of Intelligence (2nd edition)³⁶; the total N = 35 for cognitive estimate, as we did not collect it in all of the studies from which we drew data.

SD, standard deviation.

Data collection

In all three projects, we conducted semi-structured qualitative interviews with autistic adolescent and parent dyads. We conducted the interviews with each adolescent first and then their parent separately. During interviews, we asked adolescents and parents what they envisioned for the adolescent's future after high school, and we prompted them to consider various aspects of postsecondary life including education, employment, and living situation (as well as additional questions not analyzed in the present study; see Supplemental Data for full interview guides, Supplementary Table S3). We conducted all interviews in person, audio recorded them when permitted (two adolescents opted not to be recorded, so the interviewer took notes), and finally transcribed them verbatim.

Other relevant data collected at the time of the interview included demographic information (collected from parents), the Social Responsiveness Scale (1st or 2nd edition)^34,35 as an estimate of autistic traits (collected from parents), and the Wechsler Abbreviated Scale of Intelligence (2nd edition)³⁶ as a cognitive estimate (collected from adolescents). Participants provided consent and/or assent (if younger than 18 years) to participate in the study and received compensation for their time.

Scoring procedure

To achieve the aims of this study, we transformed the qualitative data from semi-structured interviews into a numerical format.³⁷ The process of converting qualitative data into a numerical format for quantitative analysis is referred to as “quantitizing” and falls under the umbrella of mixed-methods research approaches.³⁷ We had not planned to quantitize the data before data collection, but we made this decision after examining the data and noticing a range of similarities and differences in adolescents' and parents' visions for the future. Prior qualitative studies have included both autistic youth and their parents, and we developed themes about the transition to adulthood relevant to both groups.^3,22,23 Those studies examined broader themes (e.g., “Desire for Independence”²³), and they qualitatively compared parent and adolescent perspectives. In the current analysis, we sought to more specifically compare and contrast the described future visions within each dyad.

As this was a secondary data analysis, the approach our team used in the current analysis differs from the original intent and epistemological orientation for the interviews. In particular, the designed intent of the interviews was to explore how parents and youth each discuss the future within a realist/essentialist qualitative framework.³⁸ However, to conduct the quantitizing process and compare perspectives within each dyad, our research team adopted a pragmatic approach consistent with a mixed-methods orientation.³⁹ We developed a coding scheme to score the future visions reported during interviews on the degree of dyad agreement or disagreement in three areas of adulthood (i.e., postsecondary education, employment, and living situation; each of which was prompted by the interviewer during the semi-structured interviews if they had not been discussed) as well as to indicate whose expectations (the parent's or adolescent's) were higher (more independent) in each area.

We rated agreement and disagreement on a 5-point scale from “strongly disagree” (i.e., dyad made statements in direct opposition) to “strongly agree” (i.e., dyads' visions were very closely aligned), with a score of 3 representing “neither agree nor disagree.” We also scored each area on a 3-point scale to indicate that the (1) parent's expectation was higher, (2) neither expectation was higher, or (3) youth expectation was higher. Although the identification of a “higher” expectation is not a completely objective determination, we developed criteria for operationalization. In our scoring, we considered a higher score to be one that would require the adolescent to demonstrate greater independence (e.g., living away from home) and a lower expectation was less independent or the interviewee specifically discussed doubts about the vision of the other (e.g., “I don't know that he has the stamina to make it through the schooling”). While we acknowledge that this determination is subjective and culturally situated, we developed the criteria in an attempt to compare the desires of members of the individual family. If one member described a vision of independence, we labeled that as a “higher” expectation. If neither member of the dyad referred to aspects of independence, then we assigned the neutral score. As a research team, we regularly discussed our intention to remain impartial as to whether certain desired outcomes were “better” or whether certain visions were “realistic” during the scoring process. Rather, we aimed at focusing on the desires and visions expressed by participants within each dyad and at comparing them within the dyad.

Before analysis, we inputted key information and quotes from each interview into a table, with adolescent and parent perspectives side-by-side, separated by the area of adulthood. A second team member reviewed the table and transcripts to ensure that the table captured all relevant information. We then scored each dyad in all three areas on both scales. Two team members first independently scored the data. The team then reviewed and discussed disagreements, and three team members completed consensus coding. The coding agreement for the scoring system was 81.5% (75.5% for agreement scores and 86.4% for expectation scores). In the analyses (described next), we utilized collapsed versions of the agreement variable (reducing it from five levels to focus on a binary of agree or disagree)—when calculating coding agreement by using the collapsed scores, we had 85.4% agreement (84.4% for collapsed agreement scores).

Data analysis

To answer our research questions, we tallied and calculated percentages for each score level. We then compared proportions of agreement and disagreement (with collapsed scores), as well as proportions of higher expectations, using non-parametric binomial tests to determine whether the proportions differed from 0.50 (comparing two proportions; neutral scores excluded from analysis).

Results

Table 2 presents tallies and percentages showing each level of agreement and expectation scoring across all three areas of adulthood. Table 3 contains example quotes for each score. Binomial tests indicated that proportions of agreement and disagreement did not significantly differ within all three areas of adulthood. For visions of postsecondary education, 47.8% of dyads partly or strongly agreed, whereas 37.0% partly or strongly disagreed (proportions = 0.56 and 0.44; p = 0.52). For employment, 47.8% of dyads partly or strongly agreed, whereas 30.4% partly or strongly disagreed (proportions = 0.61 and 0.39; p = 0.24). For living situation, 37.0% of dyads partly or strongly agreed and 37.0% partly or strongly disagreed (proportions = 0.50 and 0.50; p = 1.00). Only 8 dyads (17.4%) partly or strongly agreed across all three areas, whereas 32 (69.6%) partly or strongly disagreed about at least one area of adulthood. Eleven dyads (23.9%) did not have any agreement.

Table 2.

Agreement and Expectation Ratings in Postsecondary Education, Employment, and Living Situation

Code	Description	Postsecondary education, n (%)	Employment, n (%)	Living situation, n (%)
Strongly disagree	Statements are in direct opposition of one another	6 (13.0)	6 (13.0)	3 (6.5)
Partly disagree	Statements do not align with parts of the other person's vision, but some parts do align. Includes statements questioning if the main vision of the other is possible and/or listing concerns	11 (23.9)	8 (17.4)	14 (30.4)
Neither agree nor disagree	Statements reflecting visions that could both turn out (i.e., not agreeing but not in opposition); complementary	3 (6.5)	7 (15.2)	9 (19.6)
Partly agree	Agreeing about the majority or main visions but not exactly matching; questioning smaller aspects of the vision	11 (23.9)	17 (37.0)	12 (26.1)
Strongly agree	Very closely aligned visions	11 (23.9)	5 (10.9)	5 (10.9)
Parent's expectation is higher	Parent expects adolescent to be more independent as an adult than adolescent expects, and/or youth identified doubts about the outcome	3 (6.5)	1 (2.2)	5 (10.9)
Neither expectation is higher	Neither expectation is higher	19 (41.3)	21 (45.7)	18 (39.1)
Adolescent's expectation is higher	Adolescent expects to be more independent as an adult than parent expects, and/or parent identified doubts about the outcome	20 (43.5)	21 (45.7)	20 (43.5)
Missing	Interview data were not codable	4 (8.7)	3 (6.5)	3 (6.5)

Table 3.

Examples of Matched Adolescent and Parent Quotes for Various Codes

Agreement	Adolescent quotes	Parent quotes
Strongly disagree	“If [I live] in the U.S., here in [same state]. If it's somewhere else in the world, probably either Slovenia, Austria, Belgium, Thailand, or Vietnam….I've gone to all of them.”	“I have a hard time imagining that she's going to be independent, that she can manage the basic needs as budget and physical appearance and eating habits…”
	“My longest-term goal is to get married and have children…I would like to be able to provide for that family…I try to be as self-sufficient as I can…that is essential for me moving out”	“We wouldn't mind him having opportunities for either living with some other people on his own… You know in a, I don't know, do they call them group homes?”
	“Well I want to go into the [local public university's video game design program]…I'm big into video game design and, uh I've done a lot of camps” So is [that program] a bachelor's degree? “Um, I think it's four years, yeah…[Then] after I get the degree I want to start my own company. So I want to be like, kind of like Microsoft in a way. Where I make my own consoles and games and then also publishing other people's games… And I'll want to get big into virtual reality stuff; I feel like it's going to be the future.”	“[His] understanding of the future is that he's going to design an app and he's going to get paid millions of dollars and that's going to take care of everything…” So you're feeling right now like a four year school's not really…? “It breaks my heart but I don't see it happening … So I mean I would like to see him do you know a trade school or there's all these things, [maybe] a shorter program.”
Partly disagree	“I do plan on going to college at some point after high school…I do have my eye set on [named specific large university with >30,000 students]”	“You know maybe he could transfer down to a university, or up to a university at any time, but right now I kinda see the smaller. Something that's a little more manageable for him.”
	“I'm going to major in veterinary medicine.” “I might do a sub major in aquatic so that way I might be able to help at the, at the SPCA, at the shelters.”	He talked about being a vet, do you see that as a possibility for him? “Um, but I don't know that he has the stamina to make it through the schooling or the discipline to be able to make it through… I worry about his ability to be organized enough to get through college and particularly that school.”
	“I'm interested in being a medical assistant…that's my dream job. Like when I'm out of [my high school] I'm planning to go to [local community college] to join a nursing program…Soon as I get my diploma [I'm] probably gonna [go to community college] and get a job.” So you think you'll work part time and take classes? “Yes…Probably [take classes] at night time”	She was talking about working and then going to school at night or something like that…“I think it's a great plan. Um, physically and mentally, I'm not sure she could handle that big of a schedule”
Neither agree nor disagree	“I want to live in [different state].”	“I do see him making enough to provide for himself…” And you said providing for himself…Is that him living on his own, you think? “Mhmm. Yes those are my goals, that's what I envision”
Partly agree	“[small out-of-state private university]'s my number one. I'd say [medium-size out-of-state private university]'s my number two. And number three is…I kind of use three as my fallback. That'd probably be the [large local public university] or [small local private college].”	“Our goal has always been for our kids to go away for college. We think it's really important but, looking at reality, my husband and I have talked about how that may not happen…We've looked at smaller schools, five thousand students or less…I'm really afraid that he'll get lost at the [large local public university]”
Strongly agree	Do you know what you're going to do when you're 18? “Wildlife… Wash the animals, wild animals.” Okay, so working with animals? “Yeah.”	He mentioned to me that he might want to work with animals…for a job, is that something you see him doing? “Oh yeah, definitely, yeah, I think he would be very competent… we've talked about doing wildlife rehab, and um, you know, being able to feed animals and um, chop up vegetables for them, or, doing cage, maybe clean the cage, or even socializing animals, um, so yea, that I think that's a good possibility.”
	“Something in animation video game or something with, dealing with writing maybe. I was hoping to, becoming like a game designer.”	“I mean she definitely has expressed interest in computers and that has kind of changed over time. At first it was coding and now it is a little more animation and like she definitely wants to do stuff. She has worked a little bit with a company downtown…. They (the company) have an apprenticeship, which, I thought wouldn't be a bad idea, um, to work with some companies and see how she does”
	“I'm hoping to get into college…I'm currently scoring points [earning credits] in [large local public university], so I might actually attend [there]…But since there are other colleges, I'd like to see what's out there.”	“I think she can do college because when she finds something that she loves…she just eats it up.”

Note: Text in italics indicate quotes from the interviewer.

Adolescents were significantly more likely to have higher expectations than their parents across all three examined areas. Overall, 43.5% of adolescents had a more independent vision of their future postsecondary education, compared with 6.5% of parents (proportions = 0.87 and 0.13; p < 0.001). Overall, 45.7% of adolescents had a more independent vision of their future employment, compared with 2.2% of parents (proportions = 0.95 and 0.05; p < 0.001). Overall, 43.5% of adolescents had a more independent vision (e.g., living in the community, outside the family home), compared with 10.9% of parents (proportions = 0.80 and 0.20; p < 0.01).

Discussion

Several studies have collected qualitative data from autistic adolescents and their parents and provided impressions about similarities and differences in how they talk about the future and the transition process.^3,22,23 However, these traditional qualitative approaches have not allowed for a specific comparison of dyad visions for the future. In the current study, we used quantitative scoring to systematically compare autistic adolescent and parent perspectives about visions for the future from interviews about adulthood. We found that very few of the adolescent–parent dyads we interviewed agreed about their visions of the future consistently across three areas of adulthood (postsecondary education, employment, and living situation). However, the majority of dyads showed some degree of agreement in at least one area. This suggests that families may be discussing the future in their households and working to attain some shared visions for the future, despite disagreements in some areas. In a prior study by our team (that used N = 15 of the participants included in the current study), we asked parents of autistic youth what transition preparation activities their families did across an academic school year, finding that having discussions about the future was the most highly endorsed activity.⁴⁰ Prior research also shows that having discussions about the future at home predicts greater involvement in school-based transition planning, which is associated with higher rates of postsecondary education participation.^25,26

Based on our analysis, autistic adolescents and their parents agreed and disagreed about their visions of the future at similar rates and consistently across different areas of adulthood. Our finding of moderate agreement between parent and adolescent perspectives is generally consistent with prior literature. A study measuring congruence of the perspectives of adolescents with special health care needs and their parents about transition readiness indicated that 30%–40% of dyads were noncongruent.⁴¹ A review summarizing findings from more than 10,000 parent–child dyads on health-related assessments found moderate to poor agreement.⁴² Although one may not expect parents and adolescents—especially across a broad age range—to agree about their visions for the future, there is practical relevance. Visions for the future can shape transition goals and transition preparation activities.^20,21 If only parent or professional perspectives are driving goal setting and decision making, then youth may not have access to the opportunities needed to work toward their goals.²⁸

We also found that parents most often had less independent views of their adolescents' futures than the adolescent had, meaning that parents planned to provide much more support for their adolescent than the adolescent envisioned needing. Parents have a broad view of the developmental trajectory of their child and opportunities to see potential challenges and needed supports for youth to be successful.⁴³ In the interviews, parents who disagreed with their child's visions of the future often presented concerns and doubts about their ability to achieve those visions.^32,43 These findings are consistent with research indicating that parents of autistic adolescents perceive greater problems than their child perceives, such as in the areas of anxiety and social functioning.^3,44–46 Although our results may not be surprising, they are concerning given research that suggests a relationship between parent expectations and employment for youth with disabilities, including autistic youth.^19,47 The findings from this study suggest that more research is needed to understand the degree to which differences in parent and adolescent expectations of the future relate to more restrictive adult outcomes (e.g., living or working in nonintegrated settings). In addition, this research highlights the need for more research on effective methods for aligning future visions and increasing expectations for autistic youth, which can promote the development of self-determination and positive adult outcomes.

Prior studies examined predictors of parent–child agreement in autism literature as well as more broadly, finding that characteristics such as age, gender, and level of functioning were not significantly related to the level of agreement.^42,48 In our study, we did not have adequate statistical power to test for differences based on adolescent or parent factors. Future research should attend to parent factors since prior studies suggest that parent psychological factors (e.g., beliefs, depression, anxiety) relate to parent expectations.^32,49 Further, although we could not examine the linkage between adolescent or parent visions of the future and their longitudinal postsecondary outcomes in the current study, we know from prior research among youth with disabilities that both can be significant predictors of outcomes.²⁴ 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, rather than focusing only on the perspectives of parents.^1,3,5

This study has several limitations to consider. First is the subjective nature of the scoring system. Although it offers a more structured examination of qualitative data, it does not reflect the strengths of a well-designed, psychometrically validated quantitative study. Further, because we did not plan for this analysis before data collection, we did not consistently prompt adolescents and parents about where their visions aligned and differed. Although we considered a large sample for qualitative interview research, our sample was relatively small for quantitative analyses and we lacked the statistical power to examine potential associations between the scored variables and participant characteristics. In addition, as is the case with much research in this area, our sample was primarily White and had more financial resources. Although about a quarter of our sample represented racial or ethnic diversity, more research is needed to understand the unique transition needs of autistic adolescents of color. Finally, the inclusion criteria for some of the contributing projects eliminated adolescents with less speech communication and those who were not planning to receive a high school diploma. Future research should examine the perspectives of a broader range of autistic adolescents and their transition planning needs.

In practice, providers supporting transition planning should avoid over-valuing the perspectives of parents, considering that these may not align with adolescent goals and likely are less independent than adolescent goals. Intervention approaches such as person-centered planning may be effective at supporting adolescent-focused goals,^50–52 yet the contributions of families in this process are less clearly defined.⁵³ There is some promising evidence in the area of family-focused transition interventions,^54–58 and future research should examine interventions to support families to work together toward shared goals for the future.

Conclusion

By comparing interviews conducted separately with autistic adolescents and their parents, we identified moderate rates of agreement across several areas of adulthood. Future research is needed to explore interventions to support families to work toward shared goals for the future. The findings of this study emphasize 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.

Authorship Confirmation Statement

A.V.K. developed the idea for the project, conducted data collection, conducted data analysis, and wrote the article. M.L.D. and E.E.D. developed the idea for the project, assisted with data analysis, and edited the article. A.N.D., A.M., and J.H. transcribed interviews, conducted data coding and analysis, and edited the article. All authors have reviewed and approved of the article. This article has been submitted solely to this journal and is not published, in press, or submitted elsewhere.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

Funding to support the data collection included in this article came from a number of sources, including a Society for the Study of Occupation (SSO:USA) Student Research Grant, a University of Utah College of Health Seed Grant, a Consortium for Families and Health Research Pilot Grant, and an American Occupational Therapy Foundation grant. A portion of Dr. Kirby's and Mr. Henderson's time was also supported through the University of Utah Program in Personalized Health and National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number KL2TR001065.

Supplementary Material

Supplementary Data

Supplementary Table S1

Supplementary Table S2

Supplementary Table S3