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.

Contraceptive Attitudes and Beliefs of Women With Sickle Cell Disease: A Qualitative Study.

OBJECTIVES: We aimed to qualitatively explore factors influencing contraceptive use in women living with sickle cell disease (SCD). STUDY DESIGN: We conducted a semi-structured qualitative study using data from interviews with reproductive-aged women with SCD. The Theory of Planned Behavior, which describes an individual's attitudes, subjective norms, and perceived behavioral control as drivers of a health behavior, served as a framework for data collection and thematic analysis. RESULTS: We analyzed interviews from 20 participants. Attitudes toward contraception showed skepticism regarding hormonal contraception and concern about adverse effects of contraception related to SCD. The role of subjective norms in contraceptive choice depended on whether participants possessed trusted sources of information, such as health care providers, family, and friends, or whether they relied on themselves alone in their contraceptive decision-making. The influence of health care providers was complicated by inconsistent and sometimes conflicting counseling. Finally, with regard to participants' perceived control in their contraceptive choices, some were motivated to alleviate menstrual pain or prevent SCD-related pregnancy risks, but many reported feeling disempowered in contraceptive decision-making settings because of ways that healthcare providers exerted pressure or responded to participants' demographic characteristics. CONCLUSIONS: Women living with SCD are influenced by many factors similar to those documented for other populations when making decisions about contraception. However, SCD amplifies both the importance and risks of contraception and may also complicate individuals' autonomy and contraceptive access. Hematology and reproductive health providers should recognize the risk of coercion, maximize patients' reproductive agency, and coordinate reproductive health counseling for patients with SCD.