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

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.

More Than Just a Variable: The Need to Explicitly Focus on Black Youth Within Autism Transitions Research.

Little evidence is available to provide context for understanding the experiences of parents and youth from historically marginalized groups as they age into adulthood, especially in regard to the transition experiences of Black autistic transition-age youth and their family members. This commentary builds upon recent publications that inform intersectional understandings of Black autistic experiences in America, and outlines research recommendations to better address the specific needs of Black autistic transition-age youth. Given the noted deficits in transition research and the transition process in regard to the experiences of Black autistic youth, we provide recommendations for improving autism transition research. We propose changes that are necessary to achieve equitable research processes, which could inform the design of targeted interventions to improve transition experiences for Black autistic youth.

Why is this topic important? There is little research on the experiences of Black autistic youth and young adults during the transition to adulthood. It is important to study this group of people, because they may have more unmet needs for services and supports during the transition years. They may have a harder time achieving employment or continuing their education because of the long-term effects of racism in communities. What is the purpose of this article? To add to what is known on this topic, we report on recent studies about Black autistic youth during the transition to adulthood. We provide research and practice recommendations. What personal or professional perspectives do the authors bring to this topic? The authors of this study are allistic researchers and research assistants who are members of a research team working on, or advising, autism transition research. A.M.R. is a White researcher, and a family member of autistic individuals, who studies the transition experiences of autistic youth. S.V. is a Black, nonbinary, public health social worker with experience in Black LGBTQIA+ mental health. E.-D.W. is a Black researcher who studies the mental health of Black autistic youth. H.S. is a White qualitative sociologist with experience studying the transition to young adulthood from the critical disability lens. K.A.A. is a mixed-race researcher who is White-presenting and who studies the intersectionality of autism, race, and poverty. T.M.H. is a Black researcher whose work focuses on intersecting identities, with a special focus on race and autism, and the way those intersections impact the lived experiences of individuals. L.L.S. is a White researcher with experience in studying health services disparities. The positionality of this team is that we identify as nonautistic researchers who seek to support increased focus on Black autistic youth and adults within autism research. What is already known about this topic? We know that there has been little attention given to studying how Black autistic youth and their families experience the transition to adulthood. We also know they are less likely to receive information about the transition in a timely manner. These disparities are unacceptable. What do the authors recommend? We need to find better ways to learn about the barriers that Black autistic youth face as they become adults. We also need to learn about the strengths they use to overcome these barriers. That information will help us to design ways to improve transitions. This work should be done with Black autistic youth and their families as partners. Researchers should use different approaches to invite Black youth into their studies. When researchers are designing studies they should think about the connections between people's identities such as being autistic, Black, or poor, because these identities combine to make discrimination worse. It would be helpful if the leaders of academic departments placed value on hiring Black and autistic scholars and encouraged more diversity within research. How will these recommendations help autistic adults now or in the future? It is possible to make changes in how Black autistic transition-age youth move through transition. However, the same solutions will not work for all communities. This is because different communities experience different barriers to receiving information and services during the transition years. We hope these recommendations will help researchers to think about how they can improve the participation of Black autistic youth and their family members.

Inextricably tied: Nonbinary autistic individuals' views on how their gender identity and autism are connected.

LAY ABSTRACT: This study explores the experiences and identities of nonbinary autistic people. The relationship between autistic and nonbinary identities has not been researched in detail. Few studies focus specifically on nonbinary autistic adults. We interviewed 44 nonbinary individuals for this study. Participants had thought-out opinions on gender identity and emphasized identifying with fluidity rather than traditional gender roles. Participants discussed the connection of their autistic and nonbinary identities and how it affected how people saw them and how they saw themselves. We have recommendations for programming, policy, and research from these findings.

What Category Best Fits: Understanding Transgender Identity in a Survey of Autistic Individuals.

Introduction: Calls for improved measures of gender identity to understand the experience of transgender individuals have grown rapidly in the past 5 years. The need for methodological innovation in this topic area has particular importance for the autistic population since a higher co-occurrence of transgender identities among autistic people has been documented but is not well understood. We use a survey with questions that reflect standards in 2018 to demonstrate how binary conceptualizations of gender did not adequately capture gender identities of transgender autistic individuals. Methods: Using descriptive statistics from a statewide survey of 1527 autistic adults (mean age 27.5 years), this study compared self-reported survey responses to close-ended standard questions at the time about gender identity to understand shortcomings in capturing this population authentically. Results: We found a mismatch between respondents answering that they were transgender, the sex assigned at birth, and gender identity on separate questions. We postulate that transgender men and women were likely selecting binary responses when asked about gender identity. Furthermore, we found that many qualitative responses reported in the self-selected "other" category reflected nonbinary identities and utilized specific terminology that revealed nuance in how they understood gender identities. Conclusions: We urge researchers to provide multiple flexible options when measuring gender identity in autistic populations as they are likely to encompass many identities. We endorse best practices for measuring gender identity for autistic research.

Why is this an important issue?: Autistic people may be more likely to identify as transgender, or a gender identity different from their sex assigned at birth. Transgender autistic people may identify with binary gender identities, as men or women. Some transgender autistic people have nonbinary gender identities or identities that are different from these binary gender identities. If standard measures do not work well for transgender autistic people, their use may result in less accurate research. We present better ways to ask gender identity questions in autism research surveys. What was the purpose of this study?: This study explored how accurately standard questions about sex and gender measure gender identity for transgender autistic people. We looked at how autistic people responded to sex and gender questions in a statewide survey completed in 2018. We suggest improvements in gender identity questions to include diverse gender identities reported by autistic people. What did the researchers do?: We collected 1527 responses from autistic adults using the Pennsylvania Autism Needs Assessment completed in 2018. We examined descriptive statistics for how respondents answered one question about current gender identity, one question about transgender identity, and one question about sex assigned at birth. What were the results of the study?: We found that these three standard questions did not reflect the gender identities of autistic people who took the survey. In response to the transgender identity question, 4% of autistic adults reported that they were transgender or nonbinary. Most (93.9%) of the sample reported binary identities, as male or female. Some autistic adults (2.3%) chose the "other" category on the current gender identity question. They reported a variety of binary gender identities or nonbinary identities. Many autistic adults did not answer questions about sex assigned at birth (26.7%) or transgender identity (27.1%). What do these findings add to what was already known?: We did not know if standard gender identity questions measured transgender identities in autistic people correctly. These findings show that they do not, but also that current measures may not fully address a variety of gender identities, including nonbinary identities. What are potential weaknesses in the study?: We use three survey questions from a survey that had already been used. The measures we used might not have captured how transgender autistic adults see themselves. Autistic adults who had support in completing the survey might have felt pressure from other people, such as caregivers, to answer a certain way. How will these findings help autistic adults now or in the future?: Transgender autistic people have not been studied or supported extensively in the past. Better gender measures could help us learn more about transgender autistic people and possible unmet needs within this population. We suggest best practices that autism researchers can implement in surveys. This will ensure that research more accurately reflects transgender autistic adults' gender identities. Respectful and appropriate methods will improve autism research and translate into better understanding, support, and quality of life for transgender autistic adults.

Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations.

Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants.

Youth Mask-Wearing and Social-Distancing Behavior at In-Person High School Graduations During the COVID-19 Pandemic.

PURPOSE: Reopening schools during the COVID-19 pandemic is a challenging policy issue that requires mitigation strategies, such as mask-wearing and social distancing. Whether youth will conform to these strategies is unclear. METHODS: We leverage data on 1,152 youth's mask-wearing and social-distancing behaviors from observations of five in-person live-streamed high school graduations from one U.S. public school district in July 2020. Multiple researchers took ethnographic field notes and systematically recorded public health behaviors for each graduation. We also use data from the local public health department, school district, newspapers, community observations, and the National Center for Education Statistics. We then conducted a descriptive quantitative analysis of mask-wearing status by gender, ethnicity, and school, along with a qualitative thematic analysis. RESULTS: Nearly 70% of students wore their masks properly while receiving their diploma, although 9.6% wore no mask and 18.7% struggled with mask fit. Almost all students removed masks for graduation photos after adults suggested they should, although 80% of them were wearing their mask properly before the photo. We found significant school variation, but no gender or ethnic variation in student mask-wearing. School variation aligned with political themes of student speeches and in adult commitment to safety measures. Student speakers at all schools mentioned altruistic concern about COVID-19. All schools struggled with social distancing throughout the ceremony, except when students were seated in socially distanced chairs. CONCLUSIONS: This study provides important insights into youth conformity to COVID-19 guidelines and strategies to protect public health during in-person schooling.

Distance and acceptance: Identity formation in young adults with chronic health conditions.

Health has long been a chief concern of life course researchers, especially in examining early life. Research on chronic conditions and their impact on individual identity often center on biographical disruption or the idea of a bifurcation of "before and after" identities. This research examines identity formation in young adults with chronic health conditions that began in childhood, a population that continues to grow. This study focuses on young adults' narrative identities, both regarding how young adults describe the transition to adulthood and how cultural ideals of young adulthood and actors from institutions influence how they describe themselves. This study uses 22 in-depth qualitative interviews to reveal how young adults distance themselves from their conditions or move to acceptance through the narratives they tell about their health, feelings, and behaviors. This research suggests that identity confirmation by others forms an integral part of the nexus of health and the life course, shaping how adolescents make the transition into young adulthood. Social support from actors in institutions gives room to some young adults with chronic conditions to integrate their conditions into their narrative identities. This study reveals the social nature of young adult identities, and how cultural ideals guide them, precisely because it uses cases of young adults who must transition to adulthood in alternative ways.