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.

Introduction

Autistic young adults face suboptimal transitions to adulthood and worse associated outcomes than peers.^1–3 Despite codified avenues for support, such as required transition planning for special education students, many autistic young adults face uncertainty after exiting formal schooling. Nearly a third of youth who receive special education services do not participate in work and education in the years following high school.³ Formal programming after the end of high school has been highlighted as important for well-being, but perspectives on this diverge; in a study about transition for autistic youth, parents found formal services to be important, whereas young adults did not reference formal services.⁴ Little is known about how autistic young adults view the transition process and the types of services they find supportive, especially among those from communities with fewer material resources.

We utilize intersectionality, a theoretical lens,^5,6 to understand how families perceive the transition to young adulthood from vantages not often included in autism research,^7–10 such as Black and/or low-income families. Systemic and interpersonal racism contributes to Black autistic youth experiencing different barriers and supports during the transition to adulthood. Autistic youth from low-income households and/or school districts may have transition experiences shaped by their socioeconomic position. A review of literature related to self-determination suggests that such concepts, which feature heavily in transition discussions, vary by culture, and conceptualizing them in terms of mainstream values may be inappropriate for people with different cultural values.¹¹

Black and Latino autistic youth and low-income autistic youth may experience additional barriers as they enter adulthood.³ The majority of African American youth (72%) who receive special education services are likely to report concrete goals related to exiting high school but also report receiving less preparation for postsecondary education¹² and receiving less opportunity to be actively involved in transition planning compared with White peers.¹³ Specifically, African American youth and youth from low-income households may be more at risk for experiencing a “services cliff” or disconnection from various essential services after high school.¹⁴ Research is needed to understand how Black and socioeconomically disadvantaged families experience the transition to address disparities in service access and outcomes.

Young adults and their parents often have differing viewpoints of what young adulthood means for a variety of reasons, not limited to historicity, generational differences, age, and orientations in the family. While there are cultural hallmarks expected of young adults, such as marriage, schooling and work, and living independently, people from different generations, cultures, and socioeconomic backgrounds conceptualize and experience adulthood differently.^2,15–17 Most young adults lose access to formalized institutions they knew in adolescence, but this is especially true of disabled young adults.¹⁸ Social support, especially from parents, is vital to positive identity development at this stage.¹⁷ Parents consistently see disabled young adults as less ready for independence and self-management than youth see themselves.¹⁹ Autistic adults and parents have differing views as they deal with an outsized transition out of childhood.^2,20–22

Most of the research related to autistic youth transitioning to adulthood is based on caregiver reports. These studies disproportionately include participants who are White with high socioeconomic status and tend to focus on traditional milestones related to independence in adulthood.¹ Under the tenants of intersectionality, social identities are understood to be reciprocally important, meaning that interactional experiences shape our thoughts on ourselves.⁵ Autistic adults and their parents experience different intersecting forms of discrimination, which may shape their opportunities, experiences, and perspectives. Autistic adults and their parents have different views of what makes autism-specific services helpful or unhelpful.²³

Autistic people may desire different outcomes than non-autistic people. For example, many autistic people value relationships, but some prefer not to socialize with other people, often due to past experiences with exclusion and discrimination.²⁴ Research on quality of life for autistic people suggests that measures developed for non-autistic people may not be valid for autistic people because different factors may impact how autistic people experience their lives. An international study with autistic adults suggests that additional themes need to be considered in conceptualizing quality of life for this population including developing autistic identity, sensory experiences, poor understanding of autistic people in society, and opportunities to contribute to society.²⁵

In qualitative inquiry, parents prioritized expectations for youths' functional skills and potential to work and live independently.^26,27 Parents generally were more concerned about establishing long-term support networks, whereas youth tended to be more concerned about the short-term transition to adulthood and gaining autonomy.^22,27 Parents also worried about their ability to coordinate what they felt were high levels of support in young adulthood for autistic individuals.²⁸ Transition research methods may not fully reflect how youth versus parents think about transition and adulthood, particularly those who experience socioeconomic disadvantages or systemic racism.

For the purposes of this study, dyadic interviews refer to separate interviews with two people, such as a parent and a young adult. In general, interviews facilitate understanding of motivations and social processes.^29,30 Dyadic interviews allow us to compare how two participants talk about similar events or interactions. This approach can be beneficial for understanding how parents and autistic individuals communicate their perspectives, especially in populations with intellectual disabilities.^31–33 Divergences between interviewees are useful in demonstrating how these families understood their social contexts.

The purpose of this study was to compare dyadic perspectives (from within the same family unit) about what was important to parents versus autistic young adults in the transition to adulthood. In this study, we define dyadic interviews as singular interviews with both members of a dyad, meaning we interviewed parents and then autistic adults (although some interviews featured the other counterpart of the dyad voluntarily). This produces a specific and nuanced understanding of the transition to young adulthood by both parties, which allows for comparison within the same families. We specifically sought to explore the experience of transitioning to adulthood among parent–young adult dyads from an economically disadvantaged, urban school district. We also sought to understand how perspectives on the transition process converge and diverge for youth and their parents in the same families, especially when the autistic youth may have higher needs for support with daily tasks.

Methods

This study draws data from a larger study focusing on families who had transitioned out of an economically disadvantaged, urban school district in the northeastern United States. Dyadic interviews of parents and young adults were collected to discern how families understood and experienced the transition out of young adulthood. This study utilized two sets of interviews: one wave of parent interviews in March and April 2021, and another with their adult children in September and October 2021. We first interviewed parents but felt that the perspectives of their adult children were missing. Thus, we decided on dyadic interviews, here meaning interviews with both individuals in a dyad, especially because autistic young adults are often excluded from research.³¹ We prioritized timeliness in collecting data on the pandemic³⁴ and engaged in virtual interviewing.³⁵ All interviewees were compensated with a $25 gift card for their interviews. This study was approved by the research team's institutional review board, and all names used in the article as pseudonyms.

Recruitment criteria

All participants were families with a transition-age youth who: (1) ever received an Autism or Autism Spectrum Disorder, Asperger's Disorder, Pervasive Developmental Disorder diagnosis, or who had special education under the category of Autism (which we confirmed via parent report, but all youth qualified for formal services such as Individualized Education Plan); (2) exited high school 1–6 years before the interview; (3) received special education services in high school; and (4) required assistance to transition, per parent report. All youth had attended a designated large, urban school district. Families were recruited from a database of participants from prior research and a university-led transition program.

Sample demographics

Four families were interviewed: four mothers, three sons, and one daughter. Demographics included three lower middle class Black families and one White family under the poverty line. All young adult interviewees were in their early 20s at the time of the interview, with a mean age of 21 years and a range of 20–25 years. They participated in transition programs after high school, and three participated in paid part-time work. Three young adults had co-occurring intellectual disability diagnoses.

All youth lived with their families. Three of the four families included mothers who lived solely with the young adult in the study. It is common for mothers rather than fathers to participate in qualitative interviews about the family, and they have long been expected to advocate for their autistic children,^36,37 this undoubtedly shaped the narratives here. All the young adults received support for daily tasks from mothers who were their main caregivers. We suspect that barriers such as discrimination or a lack of financial privilege may have been a barrier to independent living for these youth, given the ways that such barriers impact the transition to young adulthood in general.³⁸

Positionality

Autistic individuals gave input on the larger study, including representatives from communities of color and low-income communities. The last three authors have extensive background in autism research. All interviewers had prior experience with interviews and training on the subject. The first round of interviews was conducted with Anne Roux, Kristy Anderson, and Tamara Garfield. The second round was conducted by Tamara Garfield and Hillary Steinberg. The research team includes an autistic researcher with experience supporting transition-age autistic youth, parents of autistic individuals, and a researcher from a low-income background. No author on the research team is Black, and while many members did go to public schools, they did not attend schools in an urban underfunded district.

Procedure

Semi-structured interviews were conducted virtually, in line with much data collection in the COVID-19 pandemic.³⁴ We wrote interview guides for parents and young adults that touched on the same questions and themes, such as supports, how they found meaning in their narratives, and relationships. The guide can be found in the Supplementary Materials. Interviewees drove the interviews. We took a strengths-based approach, including questions such as “What are areas you might have gained skills in since becoming an adult?” and “What kinds of things do you think help someone become an adult?” Most interviews were fluid, with parents or young adults popping into interviews or helping with communication. We were deliberate about ensuring the young adults' comfort with including parents. Interviews lasted about an hour for parents. Most young adults signaled that they wanted to end the interview after about 45 minutes, which was shorter than we had anticipated. Interviews were recorded and transcribed by a third party.

Electronic transcripts were manually thematically coded³⁹ by using the software NVivo 12.⁴⁰ All authors read the transcripts holistically to identify general themes important for analysis. After reading, the authors agreed upon general codes—those about independence, the transition, and interpersonal relationship. From there, the first two authors engaged in inductive thematic coding,⁴¹ with one reading the transcripts as parent–young adult dyads and the other reading by groups of parents and young adults. The quotes were assigned to each code and then organized in terms of topicality and flow. This work was interpretive, and we focused on meaning-making.^30,42,43 As such, we did not know the truth of participants' behavior but rather how they talked about their identities and actions.⁴⁴ Co-authors often met to discuss interpretations and resolve differences in identifying themes and categorizing data.

In general, interviews facilitate understanding of motivations and social processes.^29,30 While many dyads' accounts agreed, divergences were useful in demonstrating how these families understood their social contexts. We do not believe that these findings are statistically generalizable or reflect an objective truth, as interview studies generally do not do so. Instead, we intend to refine theories and scientific understandings of the transition to adulthood for families with an autistic young adult.

Results

We found that these families did not explicitly use their social positionality, especially race and class, as a logic for understanding the transition to young adulthood. However, these positions and identities did impact how families created narratives and understood young adult life. They described significant systemic barriers to accessing transition planning and support. However, families understood this transition in terms of their own agency, values, and goals. We identified three main themes that parents and young adults identified as important to the transition to young adulthood across all eight interviews. They were independence, structured transitions, and interpersonal relationships.

Independence refers to how the interviewees conceptualized autonomy and empowerment for the transition to young adulthood. Structured transitions emphasize the importance of participation in structured activities outside the house such as specialized programming for autistic young adults and employment. Interpersonal relationships chart the challenges and joys of the young adult's relationships with peers and parents. While these themes were discussed by all interviewees, how parents and youth thought about these themes and the meaning they conveyed through them diverged remarkably. We explore each of the themes to understand more broadly what these differences reveal about the approach to the transition to young adulthood. Table 1 charts these themes and highlights a quote from each group in the dyads.

Table 1.

Themes with Example Quotes from Parents and Youth

Theme	Parent quote	Youth quote
Independence	“Ultimately, the goal for him is to become as independent and self-sufficient as possible”—Kimberly	“I also buy my own clothes, my own toiletries and my own haircuts.”—William
Structured transition	“I finally realized after she graduated from the [transition] program … I limited her during that whole transition.”—Tara	“Find some more programs and at least talk to somebody that can help you with independence”—Julian
Interpersonal relationships	“And then [all the programming] just dwindled [after COVID].”—Christine	“I have friends … And all kinds of friends”—Grace

Independence

Fundamental differences in conceptualizing independence, and thus empowerment, for parents and adult children were evident throughout interviews. We did not ask about these themes directly; rather, parents consistently spoke about independence in terms that prioritized normative adulthood, such as earning money and moving out. However, youth seemed to value both increasing autonomies in everyday activities and living interdependently with their families and how that led to pride in their accomplishments. The young adult interviewees spoke about the ability to move freely in their communities, work in part-time employment, and contribute to their families.

Parents, in general, seemed to think of independence as synonymous with self-sufficiency, which is a common narrative for young adulthood.⁴⁵ As such, this was a goal that was positioned as achievable in the future. Kimberly, mother of Julian, gave a succinct description of how parents in the sample felt about independence:

Ultimately, the goal for him is to become as independent and self-sufficient as possible. So, transition for Julian was definitely to focus on getting into the workforce and learning what that looks like and learning firsthand what it is to be responsible financially for himself, as well as continuing at a very slow pace with learning, so that when the opportunity presents, he will be entitled to bigger and better paid positions that will allow him to sustain himself. So, transitioning into adulthood, for us, means all of those things—just preparing to sustain yourself, independent of any other support if necessary.

In contrast, Julian spoke vaguely about living in his own place as a goal, which may have reflected parental expectations. This was at odds with how youth positioned empowerment in terms of ongoing accomplishments in their daily lives. Young adults Grace and Eric devised complicated ways to manage their schedules, including calendars and phone alerts. They both cited cleaning as an important sign of independence. All four young adults cited shopping, especially for groceries, as important work for both themselves and their families.

Views on work exemplified this tension. Three young adults worked part-time, and one was actively looking for employment. While the youth were focused on work as an immediate signal of independence, parents positioned a need to learn how to work as important for future independence, including earning an income and the youth living on their own. Mother Tara was pleasantly surprised that her daughter Grace was able to work and described a high level of pride in her job. When Christine was asked about the most important goal for Eric currently, she discussed “the job” and then immediately began discussing independent living, saying, “Well, I told him like, if you want to move out …” Once young adult William began working, mother Regina was able to situate an independent future for him:

And living on his own, would he really be able to do that? … I feel a little more comfortable and as he's been able to manage money well. He did some of the things they told us to do too, financially, to kind of get together for him. I've followed those things, and so those things have panned out. So, I feel a little more comfortable that he can be independent.

All the young adults had been employed at some point and spoke positively about working. Youth with jobs reported being happy with the amount they currently worked, which was part-time, and seemed empowered through doing work they enjoyed in a supportive setting and having opportunities to interact with people at work. The young adult interviewees emphasized the freedom of making purchase decisions and traveling within the community. William said, “I also buy my own clothes, my own toiletries and my own haircuts.”

All young adult interviewees spoke about the importance of supportive supervisors and job coaches as a source of empowerment in their work environments. Julian said, “I usually call my boss on the phone whenever I have difficulty understanding things like what I have to do during my job or so.” Eric and Grace emphasized the importance of breaks within the workplace, and Grace especially enjoyed greeting customers and interacting with coworkers. Youth tended to emphasize their accomplishments, relationships, and increasing autonomy, whereas parents noted these aspects of adulthood but appeared more concerned about financial independence.

Structured transition

These differences in ideas about empowerment and independence led to divergent views on the importance of ongoing formal programming such as job coaching programs or education. Parents felt that this programming was important to gain financial skills and workplace experiences, live outside the family home, and enhance future trajectories. Youth valued being able to pursue social and recreational interests on their own through these programs. Parents discussed the challenges of finding appropriate postsecondary education programs and supports such as tutoring. Lack of accommodations led to postsecondary education being inaccessible to youth. In contrast, youth did not discuss postsecondary education. However, Eric did bring up a desire to take courses at the local community college, but he could not find the right accommodations for an entrance examination. Julian tried a community college program after much coordination and research from mother Kimberly, but it proved difficult for him to keep up. She said, “So he came up a little bit short, you know, and he was very disappointed.”

All interviewees reported positive experiences with supports and programs related to skill building and relationships for transitioning to adulthood. The enrollment into these programs often took huge amounts of advocacy and work on the part of parents. As such, most youths were involved in a combination of programs to access support. Tara was enthusiastic about Grace's accomplishments in her program. She said:

I never really thought of that and, and I think it's only because Grace has always been my baby, will always be my baby. And I think I finally realized after she graduated from the [transition] program that her only disability was me to some point, because I limited her during that whole transition.

Christine discussed similarly the amount of work she put into finding the right program, including fighting with offices for the most appropriate Medicaid waiver and understanding transportation needs.

Parents tended to focus on employment programs, work experiences, and skill acquisition, whereas some youth focused more on enjoyable engagement with peers through humor, recreational activities, or shared interests. For example, while Julian participated in the Special Olympics, he emphasized his peer interactions and the opportunity to be a leader as highlights. Eric liked working on a college campus best because he could hang out in the buffet. William said of his program, “It's great,” and was “happy to learn money management skills.” Julian echoed this, saying, “I had a great experience there.”

When asked what helps someone become an adult, Julian said:

Seek guidance or explain to them how you can achieve anything and learn how to do things on your own with some support or whatnot. I'll just say, find some more programs and at least talk to somebody that can help you with independence to learn how to do things for your adulthood.

Eric similarly said that he would fund more programming for autistic young adults. He elaborated, “Social, I think that helped. Social skills groups and classes. Like what I learned in the [transition program]” and noted he learned more than job skills. Youth talked about receiving support, including job coaching, social skills groups, finance management, employment programs, recreation, and sports, which helped them make decisions, and attain desired outcomes such as employment or spend time having fun with peers.

Interpersonal relationships

Youth prioritized interpersonal relationships, especially with peers of the same age who shared similar interests and were autistic. Despite this, a “friendship cliff” seemed to co-exist with the services cliff via loss of peer connections following the end of high school. Parents lamented a lack of formalized programming, especially in the pandemic, that they felt led to social isolation. Christine said of programming after high school, during the pandemic, “And then that just dwindled.” Kimberly worried extensively about Julian's lack of access to social settings. However, both Julian and Eric noted no change in their relationships in adulthood. Eric said he would like to “meet more new people,” but that socialization (especially dating) could be difficult from a sensory perspective; lack of access to settings, or difficulties with sensory sensitivity in night clubs or music venues, constituted potential barriers to more interaction with peers.

Youth turned to community organizations to fill this void of autistic-specific programming during the pandemic. Eric noted the need to consider individual preferences as autistic peoples' social preferences could vary. Parents were sometimes unsure about youths' social preferences, expressing that they seemed happy being alone but would also benefit from positive peer relationships. Youth discussed the importance of opportunities to socialize as adults and the need for support to engage with peers. In fact, youth brought this up quite often and were insistent on discussing social relationships throughout the interviews.

The young adults spoke positively about their existing friendships. Grace brought up her friends from church without prompting quite early in the interview. This exchange reflects her feelings about them:

Grace: I have friends … And all kinds of friends, and all my friends ….

INT: Got it. So what makes your friends good friends?

Grace: I am happy.

INT: So you feel happy when you're with them?

Grace: Yes.

Eric had one best friend he was close to whom he saw regularly. In addition to going into the community together, they would accompany each other to formal social settings and programming. These friends were a clear source of joy and pride for young adults.

Youth had friends through church and gaming, but COVID prevented in-person meetings in these settings. Most interactions were based around structured activities in programs or workplaces, and these relationships withered once these activities were canceled. All interviewees were frustrated with a lack of social programming due to COVID. William, for example, had a friend he had made through a program aimed at supporting friendships between neurotypical mentors and autistic young adults. Once the formal mechanism of contact was severed, he did not hear from this friend. Grace said that she was angry and sad about cancellations of in-person activities “because I missed my friends.” While parents worried about limited socialization due to the end of high school and the pandemic, youth were clear that the friendships they had were meaningful to them. They highlighted the importance of social relationships and interdependency in their discussions of all aspects of the transition to young adulthood, much more often than parents.

Discussion

We sought to understand the transition out of high school from youth perspectives across a sample of racially and socioeconomically diverse young adults and their parents and to determine how youth perspectives differ from parent perspectives. This is where our study diverged from previous work on the transition to young adulthood in families with an autistic young adult. While we identified the population of those who had aged out of a predominantly Black and low-income district, families did not explicitly talk about race or class when discussing the transition to young adulthood. However, we suspect that these families faced more severe barriers to independent living despite consistent efforts to engage in services and programming. Instead, parents adopted normative hallmarks of young adulthood such as living on one's own, education, work, and financial independence as goals.

We know from an intersectional perspective that these autistic youth faced added barriers to achieving these expectations. Furthermore, the literature suggests that young adults and autistic people in general may have differing values from allistic parents. While all interviewees discussed independence, the structured transition, and interpersonal relationships, parents conceptualized these in tandem with larger mainstream goals. Young adults, however, found these less meaningful and instead valued interpersonal support and relationships. Specifically, youth focused on the importance of people who provided a variety of supports through job coaching, church, and social programs. With youth spending more time in services than parents, it made sense to focus more on the fit with supporters/tasks/environment as they are actively learning and adapting to these things that parents are not generally present to observe.

Traditional ways of thinking about the transition to young adulthood, both in general and in the literature, were seemingly less accessible to these Black and/or low-income youth with higher needs for support in daily activities. Youth in this study who were employed reported being satisfied with the part-time jobs they enjoyed. Interviewees viewed previous work or internships, employment services provided through programs or job coaches, supportive employers or coworkers, and accommodations at these jobs as beneficial. Postsecondary education, while a predictor of employment outcomes,⁴⁶ may not be readily accessible or advertised to Black and/or low-income families or youth with developmental disabilities.⁴⁷

While autistic young adults struggle with access to programming and social supports in general, this may be magnified for our population of study here.³⁸ Youths in this study who could not get the accommodations or support needed were unable to access or succeed in postsecondary education. Lowering the barrier to education and employment to less privileged autistic youth is important in general. While it serves the goals of parents to help youth with a trajectory they find important, we argue that it is more important to give autistic young adults access to what fulfills them, and here, we find that means finding autonomy and fulfillment through interdependence.

As such, we emphasize our findings regarding the importance of social supports and relationships. Given the consequences of the COVID-19 pandemic on socialization opportunities and the service cliff after high school, many autistic young adults lacked access to affirming communities. Access to social skills groups and autism-specific services such as transition programs did not translate into relationships, especially when the friendships were not organic or between like-minded peers. Evidence for the need for spaces to interact with peers who have shared interests, especially among autistic youth and young adults, is growing.^27,48,49 Given the importance young adults place on social relationships, we call for more inclusive practices in all community spaces (such as churches, gaming communities, and other social institutions). Dedicated social spaces for autistic young adults should be deliberately built where friendships can be cultivated organically.

Parents had an expectation that young adults fulfill normative social role hallmarks (e.g., financial independence, marriage, education, parenthood, and living on one's own) to be considered adults. However, we found that autistic young adults were less interested in meeting these milestones and instead found self-fulfillment, interdependence, and social relationships more valuable. This finding concurs with the general trend for many young adults, with increasing numbers living at home or defining adulthood as more centered around emotional fulfillment.^45,50,51 Additionally, barriers to achieving these traditional hallmarks are more pronounced in contemporary society, as demonstrated by how youth conceptualized empowerment as resisting normative cultural expectations.

Given that much of the current literature on the transition to young adulthood for autistic transition-age youth reflects traditional social role hallmarks, we call for reconsidering the conceptualization and measurement of “outcomes.” Aspirations to achieving traditional social roles may shape much of the perspective of parents who were raised during an era in which work, financial independence, and independent living were more readily attainable. It is not always a useful framework for understanding—and measuring—what is important to the transition to adulthood for the current cohort of autistic young adults.

Further research could help reshape the transition process to focus less on formal meetings aimed at attaining objective adult outcomes. Instead, researchers could focus on developing communication and mutual understanding, building self-efficacy and self-advocacy skills, exploring opportunities related to education and employment, and creating stakeholder engagement/coordination around holistic person and family-centered goals. This may align with how disabled young adults approach life experiences, especially if they are excluded from normative trajectories. This further necessitates investment in independent living structures that balance interdependence and autonomy, and increased support for families with autistic young adults (especially those with less cultural and financial resources).

A strength of this study was the inclusion of Black and lower income families and autistic individuals who are often left out of autism research. Autistic youth and their parents did not discuss the impact of social positionality or racial identity on the transition to adulthood. These findings are consistent with a study that suggests that Black autistic adults are less likely to report experiences related to racial discrimination than non-autistic Black peers. For Black autistic young adults, challenges and discrimination associated with disability may be more salient than systemic and interpersonal racism.⁵²

We encourage intersectional approaches to the study of transition among autistic youth, including more emphasis on Black families, low socioeconomic status families, and other groups underrepresented in research. We also recognize that although Black populations and low-income populations in urban settings experience some overlapping systemic issues, they are also distinct and heterogeneous populations. This should be factored into recruitment and sampling. Disparities in transition support, service access, and outcomes for autistic youth highlight the need to understand how underserved populations experience transition and develop holistic, culturally appropriate policies and supports.

The flexibility of a qualitative approach allows us to prioritize the viewpoints of autistic young when examining the institution of the family. It was important to us as researchers to ensure we represented autistic young adults, especially those with support needs in their daily lives, as authentically as possible. This informed our technique with dyadic interviews. We eschew a deficit approach to dyadic interviewing, meaning that we encourage strength-based approaches. By authentically reflecting both parent and young adult perspectives in the family, our methods were a particular strength of this study. There is a need to understand where youth and parent narratives converge and diverge so that we can develop improved measurements and supports. We found the dyadic nature of interviews important for uncovering patterns around ideas about meaning and identity. Autism transition literature would benefit from the expanded use of this method, both in terms of studies with larger samples and with more deliberate processes around addressing the power of parents in data collection.

One limitation of this study was the possibility of selection bias for autistic young adults supported by involved parents. While parent support was a strength in accessing narratives of both groups in this study, future research should attend to many kinds of families and power dynamics. We also suggest that more data collection over time in shorter interviews may be appropriate for autistic young adults who have been taught the importance of compliance and may need time to process questions. Another limitation is that this study only included a small number of youth and parents. These results are not representative of all members of the communities we sampled from here.

Future research should also attend to differences in urban or rural settings, LGBTQIA+ youth, youth in poverty, undocumented youth, and youth in foster care. Community-based research may assist in reaching communities who have not been included in research and ensuring that research is relevant and respectful to marginalized communities. While we believe that we were successful in accessing rich data in our dyads, we mainly were able to recruit families who had access to programming after high school. We suggest more data be collected with families of autistic young adults who cannot access such programs.

Finally, we recognize that this study encapsulated a very specific moment in history. Many formal programs that families relied on were limited during the COVID pandemic, which disrupted the trajectories of many young people, especially those attempting to exit formal services and enter the workforce. We viewed the timing of this study as a strength. These young adults were vulnerable to the frustrations that the COVID-19 pandemic magnified within Black and low-income communities, which were disproportionately impacted. This study provided a window to exemplify how these processes impacted individuals.

Conclusions

Autistic youth and their parents approach transition differently, and research is needed to help facilitate a greater understanding of how these perspectives impact the transition process, particularly for socioeconomically disadvantaged youth at risk for suboptimal outcomes in adulthood. While parents were concerned about youths' ability to attain greater financial independence in the long term, youth focused more on exercising autonomy in daily life and working part-time jobs that were meaningful to them. We find and support a further emphasis on social relationships and interdependence as a major value of autistic young adults that should be reflected in research, support services, and targeted programming. Further research and supports addressing the perspectives of marginalized, autistic youth and their families could improve transition research and reduce disparities, inform the design of culturally competent supports, and lead to more effective, holistic support for families working through the transition process.

Authorship Confirmation Statement

H.S. lead coding, collected data, and contributed to each section. T.G. contributed to each section, collected data, and participated in coding. A.R. contributed to each section, conceptualized the study, and contributed to coding. L.S. and P.S. created the study on the transition to young adulthood and pursued funding for this project, as well as contributed to findings. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by the Health Resources and Services Administration, U.S. Department of Health and Human Services, or the U.S. Government.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This project was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UJ2MC31073: Autism Transitions Research Project.