Anne M. Roux

Background: The Workforce Innovation and Opportunity Act (WIOA) of 2014 mandated significant changes to U.S. Vocational Rehabilitation (VR) services, including allocating 15% of state VR funds for pre-employment transition services (Pre-ETS) for youth with disabilities. Objective: This study examined changes in VR service users, service delivery, and employment outcomes pre- (2014–2016) and post-WIOA (2017–2019) using RSA-911 administrative data. Method: We analyzed demographic and disability characteristics, service types, and employment outcomes for over 1 million VR service recipients ages 14–64 across all U.S. states. Multivariable logistic regression assessed predictors of employment at VR exit. Post-WIOA, VR service users were younger and more likely to have a “most significant disability.” Results: Receipt of nearly all service types declined, particularly postsecondary education and job-related services, despite stable spending per person. Employment outcomes decreased across all age groups, most notably among youth ages 14–18. Receipt of job-related services was strongly associated with higher odds of employment, while longer service duration predicted lower odds. Conclusion: Findings suggest that WIOA's funding shifts may have unintentionally reduced service access and employment outcomes, especially for adults. As VR systems recalibrate, further research is needed to assess cost-benefit tradeoffs and ensure equitable service delivery across age and disability groups.

Recent research has suggested that people with autism spectrum disorder may be disproportionately at risk of substance use disorders. This study analyzed national-level Medicaid Claims data to compare substance use disorder prevalence among Medicaid enrollees with autism spectrum disorder ( N = 388,426) and a random sample of enrollees without autism spectrum disorder ( n = 745,699) and to examine whether this association differs across sex and age groups and changes after adjusting for co-occurring mental health conditions. We also examined how the association between autism spectrum disorder and substance use disorder is moderated by co-occurring non-autism spectrum disorder mental health conditions and by community-level social determinants of health by merging Medicaid Claims data with zip code-level US Census data on socioeconomic deprivation. By 2016, 7% of Medicaid beneficiaries with autism spectrum disorder and no intellectual disability had at least one substance use disorder diagnosis, up from 1.75% USD prevalence among enrollees with autism spectrum disorder (no intellectual disability) in 2012 Medicaid data. Individuals with autism spectrum disorder aged 30–64 years were at an elevated risk of cannabis and hallucinogen disorders; this risk is likely compounded by co-occurring mental health conditions, which affect a half of all individuals with autism spectrum disorder and only 23% of individuals without autism spectrum disorder. Research and policy implications are discussed in turn. Lay Recent research has suggested that people with autism spectrum disorder may be disproportionately at risk of substance use disorders. The present study analyzed national-level Medicaid Claims data to compare substance use disorder prevalence among Medicaid beneficiaries with autism spectrum disorder and without autism spectrum disorder and to examine whether this association differs across sex and age groups and depends on mental health conditions besides autism. We also examined how the association between autism spectrum disorder and substance use disorder is moderated by co-occurring non-autism spectrum disorder mental health conditions and by community-level social determinants of health. For the latter purpose, Medicaid Claims data were merged with zip code-level US Census data on socioeconomic deprivation. Our analyses demonstrated that, by 2016, 7% of Medicaid enrollees with autism spectrum disorder and no intellectual disability had at least one substance use disorder diagnosis, up from 1.75% USD prevalence among enrollees with autism spectrum disorder (no intellectual disability) in 2012 Medicaid data. Individuals with autism spectrum disorder aged 30–64 years are at an elevated risk of cannabis and hallucinogen use disorders, while this risk is likely compounded by co-occurring mental health conditions, which affect a half of all individuals with autism spectrum disorder and only 23% of individuals without autism spectrum disorder. Research and policy implications are discussed in turn.

Alongside the rise in online qualitative research, fraudulent representation of research participants is increasing, and current strategies to address this issue within studies of non-neurodiverse samples may exclude autistic voices. Seeking to reduce fraudulent or “scammer” participation in our focus group study, and increase data validity and expenditure efficiency, we implemented strategies suggested in the literature and tested additional strategies. This research adds to the growing conversation around best practices for reducing scammers in autism research using online methods by (1) providing data evaluating the utility of existing strategies; (2) testing emerging strategies; and (3) discussing ethical dilemmas involved in addressing scammers in studies. We received over 200 expressions of interest and the established strategies suggested in the literature plus emerging strategies proved critical for mitigating the enrollment of scammers in focus groups. Protecting the integrity of data about human subjects from fraud is essential for rigorous autism research; trustworthy conclusions cannot be otherwise drawn from analysis. However, the strategies inherently require subjective decision-making that could systematically exclude participants with more limited or atypical communication and result in unfair subject selection. Procedures we recommend incur resources and are time consuming but are beneficial to ensure data integrity and inclusivity. Lay Over the last decade, especially since the pandemic, more research has been happening online. Conducting research online can create opportunities to include autistic people across the world and make our studies more diverse. However, conducting research online had led to scammers, or people pretending to be autistic, participating in autism research studies. Strategies to stop scammers may accidentally leave out autistic people who have difficulty with processing time and open-ended questions. We tried out documented strategies to stop scammers from participating in autism research. We also tested new strategies to understand how helpful they are. Using these strategies, we suspected over 100 people who wanted to participate were scammers and did not invite them to participate. As researchers, we must ensure we stop scammers from participating in our studies. It’s important to highlight autistic voices and guarantee we get accurate results. However, the strategies to identify scammers may also leave out autistic people who have communication differences. This is unfair and could also make our results less reliable. The existing and new strategies to stop scammers take a lot of time and resources but they’re worth it to make sure our data are reliable, and include only autistic voices.

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. Community brief 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.

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.

Purpose We used data from the National Survey of Children’s Health to (1) examine differences in economic hardship and safety net program use after the implementation of federal relief efforts, and (2) assess whether the COVID-19 pandemic exacerbated autism-based disparities in hardship and program use. Methods We examined five dimensions of economic hardship (poverty, food insecurity, medical hardship, medical costs, and foregone work) and four safety net programs (cash assistance, Supplemental Nutrition Assistance Program (SNAP), Special Supplemental Nutrition Program for Women, Infants and Children (WIC), and free or reduced-cost meals). First, we calculated adjusted prevalence and odds ratios to compare pre-COVID (2018–2019) and during COVID (2021) outcomes by autism status. Next, we calculated the adjusted odds of each outcome among autistic children compared to those of children with and without other special healthcare needs at both time points. Results COVID-19 exacerbated autism-based disparities in food insecurity, SNAP, and public health insurance, but alleviated inequities in medical hardship, foregone work, and cash assistance. Autistic children did not experience declines in food insecurity or increases in SNAP like other children; medical hardship and foregone work decreased more for autistic children; and the magnitude of autism-based differences in public coverage significantly increased during the pandemic. Conclusion Federal relief efforts likely improved economic outcomes of children; however, these effects varied according to type of hardship and by disability group. Efforts to promote economic well-being among autistic populations should be tailored to the financial challenges most salient to low-income autistic children, like food insecurity.

Policy Points: Employment is a key social determinant of health and well‐being for the estimated 5.4 million autistic adults in the United States—just as it is for citizens without disabilities. Evaluation and monitoring of publicly funded employment services is paramount given the dramatic increases in adults with autism who need job supports. Vocational Rehabilitation agencies appeared to be absorbing short‐term employment needs of autistic people, but Medicaid was severely lacking—and losing ground—in serving those who need longer‐term employment services. Across both Vocational Rehabilitation and Medicaid, we estimated that only 1.1% of working‐age autistic adults who potentially need employment services are actually receiving them—leaving an estimated 1.98 million autistic individuals without the employment services that are associated with achievement of well‐being. Context: Employment is a key social determinant of health. As such, high rates of unemployment, underemployment, and poverty across the rapidly growing autistic population are concerning. A web of publicly funded services exists to support the employment, and associated health and well‐being, of United States citizens with autism and other intellectual and developmental disabilities, namely through Vocational Rehabilitation (VR) and Medicaid home‐ and community‐based services (HCBS) waivers. Given an absence of overarching surveillance of employment services, this study aimed to characterize the distribution of autistic service users across Medicaid versus VR, understand the types of employment services utilized within these programs and expenditures, and assess overall capacity to provide employment services as needs continue to increase.Methods: This study examined the distribution of employment services among autistic people compared with those with intellectual disability using 2008–2016 data from the Centers for Medicare & Medicaid Services and the Rehabilitation Services Administration. Estimated need for employment services among autistic individuals was compared with capacity derived from VR service counts and a review of HCBS waivers.Findings: The number of autistic people served through VR tripled during the study years, whereas those served through Medicaid only increased slightly. VR spending increased by 384% over the study years, whereas Medicaid costs decreased by 29%. Across VR and Medicaid, we estimated that only 1.1% of working‐age autistic adults who needed employment services received them.Conclusions: Although VR appeared to be absorbing short‐term employment needs of autistic individuals, Medicaid was severely lacking—and losing ground—in serving those who needed longer‐term employment services. VR far outpaced Medicaid in both the number of autistic people served and total expenditures across the study years. However, an estimated 1.98 million autistic adults did not receive employment services that could be critical to improving their health and well‐being.