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.

The Economic Impacts of COVID-19 on Autistic Children and Their Families.

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.

Low-Income Households of Children With Autism and the Economic Safety Net.

OBJECTIVE: This paper examines the distribution, parameters, and determinants of safety net program use among a nationally representative sample of low-income children with autism spectrum disorder (ASD). METHODS: We used data from the 2021 National Survey of Children's Health to produce population estimates of material hardship and safety net program use among 554 low-income households of children with ASD, ages 3 to 17 years, relative to 2831 children with other special health care needs (SHCN) and 8758 children with no SHCN of the same age. Design-adjusted multivariate logistic regression models identified predictors of cash assistance, Supplemental Nutrition Assistance Program, and disconnection from both. RESULTS: There were few significant differences in material hardship between children with ASD and those with other SHCN, although children with ASD experienced significantly higher levels of hardships compared to children with no SHCN. Having a child with ASD did not significantly increase the odds of safety net use. Health insurance and household income were stronger predictors of use than disability. Nine percent of disconnected children lived in households under 100% federal poverty level and experienced some type of material hardship. CONCLUSIONS: Future research about the economic security of children with ASD and their families could focus on the following 3 areas of inquiry: assess how race, ethnicity, or socioeconomic position interact with disability to influence safety net program use; examine the intersection between Medicaid and safety net programs at the state and national levels; and identify specific subgroups of children at risk for disconnection and understand why they are not accessing benefits.

Evidence of item bias in a national flourishing measure for autistic youth.

Flourishing is a positive health indicator that aligns with strengths-based perspectives and measures within autism research. Flourishing indicators were recently included in the National Survey of Children's Health (NSCH) and have been used to evidence disparities in flourishing experienced by autistic children compared to non-autistic peers. Yet, little has been done to examine the utility of standard flourishing items for this population. This study examined the NSCH caregiver-reported flourishing items for measurement item bias. A cross-sectional, representative sample of autistic and non-autistic US children aged 6-17 years (n = 41,691) was drawn from the 2018-2019 NSCH public dataset. A confirmatory factor analysis using a multiple indicators and multiple causes model (MIMIC-CFA) was conducted to (1) test for differential item functioning (DIF; i.e., measurement bias); and (2) estimate latent mean group differences after controlling for DIF. Findings supported a 3-factor (social competence, school motivation, and behavioral control), 10-item model structure consistent with past literature, yet measurement bias was evident for 6 of the 10 items. Persistent group differences, after accounting for DIF and covariates, indicates that caregivers of autistic children perceive their children are experiencing meaningfully lower flourishing outcomes compared to caregivers of non-autistic children. However, evidence of measurement bias for items related to the social competence dimension calls into question the applicability of this measure for autistic children. Further interpretation of group differences and use of this measure should be approached with caution.

Sexual and reproductive health services for autistic young people in the United States: A conceptual model of utilization.

BACKGROUND: Sexual and reproductive health services promote the ability of people to have safe, satisfying, non-coercive sexual experiences and make informed decisions about pregnancy. Stakeholder input is needed to understand barriers or facilitators to service access for autistic people, who report unmet needs. METHODS: We recruited 18 autistic people, 15 parents, and 15 service providers in the United States to participate in an interview and two surveys. Using their input, we created a conceptual model of sexual and reproductive health service needs, access barriers, and facilitators. RESULTS: Stakeholders rated a variety of sexual and reproductive health services as important for autistic people, including those with intellectual disability or minimal verbal language. Stakeholders identified barriers to sexual and reproductive health service utilization including lack of service availability, lack of service providers with autism or neurodiversity training, lack of accurate information about autism and sexuality, verbal and communication differences that are not accommodated by service providers, and socio-cultural attitudes about sexuality. Stakeholders identified facilitators to service access including person-centered, trauma-informed care, service accommodations such as clear and detailed expectations, and long-enough appointments. We created a conceptual model based on the social ecological model of health to organize these utilization factors and support future research, provider, and policy action. Stakeholders provided feedback and responded favorably on the model's accuracy, utility for spurring research, practice, and policy improvements, and application to diverse groups of autistic people. CONCLUSIONS: The model shows the many feasible ways to support equitable access to services for autistic people.

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.

Perspectives of Pediatric Community Health Workers: Roles, Successes, and Challenges.

This multicenter qualitative study described the roles of 10 pediatric community health workers (CHWs) in their own words through exploration of the role features, successes, and challenges in pediatric health care settings across three urban U.S. cities (Philadelphia, New York City, and Cincinnati). Individual, semi-structured telephone interviews were conducted. Interviews described prominent features of the pediatric CHW role, which included taking a family-centered approach to goal setting and determining support needed, ensuring family goals stayed at the center of the work, and acting as a trusted figure for families to talk openly with. CHWs described their role as rewarding, believing in the work, and feeling a sense of fulfillment, and felt successful when families had positive outcomes, including when barriers were eliminated, resources were obtained, or independence was demonstrated by families. Challenges CHWs faced in their roles included establishing trust with families, managing the ever-changing family circumstances many families experience due to socioeconomic barriers, and managing limitations of protocol and restrictions within their roles. This study demonstrated numerous considerations for CHW practice in pediatric health care settings, in addition to considerations for pediatric-specific CHW program development and management. The primary policy implication of this study included a basis for increased funding for CHW programs in pediatric health care settings. This study also demonstrated a need for further research on the change CHWs effect within child and family systems outside of health care, such as schools and child welfare agencies.

Campus recreational participation and COVID-19: impact on college student health and well-being.

Objective: Campus recreational sport activities impact college student health and well-being in a variety of domains. This multi-institutional study examined the participation of students in campus recreation during the pandemic and explored the relationship between student participation and their demographic markers, COVID-19 experience, and perceptions of risk, health and safety. Methods: Results from a survey of 1,815 American college students indicated the presence of statistical differences in sport participation based on Gender, Race, State, Personal COVID-19 Experience, Campus Safety Efforts, and Risk Perception Score within various areas of analysis. Results: The impact and meaning of these cross-sectional results are discussed with reference to the ongoing pandemic and student health. Recommendations are presented within the context of this vital programming area both during and beyond the current crisis. Conclusion: These results are especially important given the health benefits associated with participation in recreational sport as tools to mitigate against the unprecedented consequences of the pandemic.

Living arrangements and satisfaction of current arrangement among autistic adults reported by autistic individuals or their caregivers.

BACKGROUND: Living arrangements is an essential component of the social environments for autistic adults. The need to understanding the status and experience of living arrangements has been highlighted. AIM: This study examined living arrangements and satisfaction with current arrangements of autistic adults reported by autistic adults or caregivers of autistic adults. METHODS: This study used data from a statewide survey of autistic adults or caregivers. RESULTS: Older autistic adults and those employed and had higher financial resources were more likely to live alone or with a roommate or spouse than to live with family or in a supervised setting. Correlates of greater satisfaction included being young, either men or women (vs. non-binary adults), public insurance, fewer service needs, no or one mental health diagnosis (vs. two or more), no psychiatric emergency room or hospitalisation history, and living with a roommate or spouse (vs. living with family). CONCLUSION: This cross-sectional study adds to the literature on the status of living arrangements and satisfaction with living arrangements among autistic adults. Future research is needed to investigate contributing factors to the satisfaction of living arrangements and quality of life among autistic adults.

Self-reported COVID-19 vaccination acceptance and hesitancy among autistic adults.

Identifying factors associated with COVID-19 vaccination acceptance among vulnerable groups, including autistic individuals, can increase vaccination rates and support public health. The purpose of this study was to determine differences among autistic adults who reported COVID-19 vaccination acceptance from those who did not. In this study we describe COVID-19 vaccination status and self-reported preferences among autistic adults and identify related factors. Vaccine accepters were more likely to report increased loneliness during COVID-19, lived in more populous counties (p = 0.02), and lived in counties won by President Biden in the 2020 US presidential election (p < 0.001). Positive correlations were found between desire to protect others, concern about contracting COVID-19, and trusting vaccine safety (p < 0.001). Concern about vaccine safety was common among the vaccine hesitant, while lack of concern about COVID-19 overall was not. Identifying health promotion strategies based on self-reported, lived experiences about COVID-19 among vulnerable groups is key for public health impact.

National and State Trends in autistic Adult Supplemental Security Income Awardees: 2005-2019.

This paper used Social Security Administration program data from 2005 to 2019 to examine national- and state-level changes in the number of new adult supplemental security income (SSI) awardees on the autism spectrum relative to awardees with intellectual disability and other mental health disorders. We identified three main findings: the number of autistic awards increased between 2005 and 2019 when awards for all other mental health disorders declined; roughly nine out of every 10 autistic adult awardees were between ages 18-25 years; there was variation in the growth of autistic awards across states. These findings support the need to consider geographic and age differences in SSI program participation among autistic adults and determine the underlying causes.

Medication Use in Youth With Autism and Attention-Deficit/Hyperactivity Disorder.

OBJECTIVE: Children with autism spectrum disorder (ASD) may benefit from medication to treat a diverse array of behaviors and health conditions common in this population including co-occurring conditions associated with ASD, such as attention-deficit/hyperactivity disorder (ADHD) and anxiety. However, prescribing guidelines are lacking and research providing national estimates of medication use in youth with ASD is scant. We examined a nationally representative sample of children and youth ages 6 to 17 with a current diagnosis of ASD to estimate the prevalence and correlates of psychotropic medication. METHODS: This study used data from the 2016 and 2017 National Survey of Children's Health. We estimated unadjusted prevalence rates and used multivariable logistic regression to estimate the odds of medication use in children and youth across 3 groups: those with ASD-only, those with ASD and ADHD, and those with ADHD-only. RESULTS: Two thirds of children ages 6 to 11 and three quarters of youth ages 12 to 17 with ASD and ADHD were taking medication, similar to children (73%) and youth with ADHD-only (70%) and more than children (13%) and youth with ASD-only (22%). There were no correlates of medication use that were consistent across group and medication type. Youth with ASD and ADHD were more likely to be taking medication for emotion, concentration, or behavior than youth with ADHD-only, and nearly half took ASD-specific medication. CONCLUSIONS: This study adds to the literature on medication use in children and youth with ASD, presenting recent, nationally representative estimates of high prevalence of psychotropic drug use among children with ASD and ADHD.

Vocational Rehabilitation Service Utilization and Employment Outcomes Among Secondary Students on the Autism Spectrum.

U.S. policy interventions encourage earlier provision of Vocational Rehabilitation (VR) services to support students and youth with disabilities such as autism spectrum disorder (ASD) during the transition from school to work. We analyzed Rehabilitation Services Administration (RSA-911) data using multivariable logistic regression to determine the association of VR services receipt with employment outcomes for students ages 16-21, same-age non-student youth and young adults with ASD. Students with autism received job-related services (job search, job placement, and on-the-job supports) at rates significantly below comparison groups, even though odds of successful employment at VR exit were significantly higher if they received these services. Findings suggest that rates of employment among students with autism might be improved with intentional delivery of job-related services.

Prevalence and Correlates of Work Experiences Among High School Students on the Autism Spectrum.

This study used nationally representative data to describe the prevalence and correlates of work experiences among high school students with autism who received special education. Four in tenstudents with autism experienced any type of work (community-based, school-sponsored, paid or unpaid) within a given year-significantly fewer than peers with and without disabilities. Rates of paid work among students with autism were comparable to students with intellectual disability (ID)but half the rate of non-special education peers. Among youth with autism, significant correlates of having work experiences included being white, parent participation in transition planning, and functional skills including navigation. Fostering a variety of early work experiences should be a key goal of disability employment policy at federal and state levels.

Trends in Supplemental Security Income Payments to Adults With Autism.

OBJECTIVE: This study used Social Security Administration program data to identify population-level trends in Supplemental Security Income (SSI) program participation and payments to adult recipients with autism spectrum disorder (ASD) relative to recipients with intellectual disability and other mental disorders. METHODS: The authors examined SSI program data from 2005 to 2015. Variables included caseload size, number of new adult awardees per year, total annual SSI payments per disability group, and average annual SSI payment per recipient. RESULTS: Adults with ASD represented a growing share of the total first-time SSI awards given to adults with mental disorders, with percentages increasing from 1.3% in 2005 to 5.0% in 2015. In 2015, 158,105 adults with ASD received SSI benefits, a 326.8% increase since 2005. Federal SSI payments to adults with ASD increased by 383.2% during the same period (totaling roughly $1.0 billion in 2015). The annual average payment for adults with ASD was $6,527.40 in 2015. CONCLUSIONS: The purpose of the SSI program is to reduce the extent of poverty by providing monthly payments to eligible individuals with disabilities. The authors found that a large and growing number of adults with autism receive SSI benefits. This finding underscores the importance of future research related to the economic security of adults on the autism spectrum.

Services for Adults With Autism Spectrum Disorder: a Systems Perspective.

PURPOSE OF REVIEW: We review original research about services for adults on the autism spectrum published from January 2013 through December 2018. The main aim is to characterize the topical and methodological aspects of research about services. We review research on services related to employment, living in the community, and social participation. We compare our results with those from a similar review published in 2012 to assess progress and identify where new directions in research about services for adults with autism are needed. RECENT FINDINGS: We found the evidence base about services for adults on the autism spectrum remains very small and highly variable in aims and methods. There is wide variability in methods used to define sampling frames and recruit participants. Most studies focus on employment. Almost no studies examine the overall ecosystem of services serving autistic adults. Few studies use a conceptual framework for understanding access to, or improvement of, services. The small size of the extant research coupled with inconsistent quality prevents the accumulation of new knowledge in ways that would significantly inform the improvement of systems of care for the growing population of adults on the autism spectrum.

Cooling The Hot Spots Where Child Hospitalization Rates Are High: A Neighborhood Approach To Population Health.

Improving population health requires a focus on neighborhoods with high rates of illness. We aimed to reduce hospital days for children from two high-morbidity, high-poverty neighborhoods in Cincinnati, Ohio, to narrow the gap between their neighborhoods and healthier ones. We also sought to use this population health improvement initiative to develop and refine a theory for how to narrow equity gaps across broader geographic areas. We relied upon quality improvement methods and a learning health system approach. Interventions included the optimization of chronic disease management; transitions in care; mitigation of social risk; and use of actionable, real-time data. The inpatient bed-day rate for the two target neighborhoods decreased by 18 percent from baseline (July 2012-June 2015) to the improvement phase (July 2015-June 2018). Hospitalizations decreased by 20 percent. There was no similar decrease in demographically comparable neighborhoods. We see the neighborhood as a relevant frame for achieving equity and building a multisector culture of health.

Introduction to Transitions in the Life Course of Autism and Other Developmental Disabilities.

The Health Care Transitions Research Network for Autism Spectrum Disorder and other Developmental Disabilities and the Life Course Research Network, both funded by the Maternal and Child Health Bureau, invited articles for this Supplement. Our goal in this Supplement is to highlight and explore developmental and transition-related challenges over the life course of individuals on the autism spectrum and other neurodevelopmental disabilities, discuss the clinical and practice implications of these issues, highlight gaps in knowledge, and identify directions for future research.

Stakeholder Perspectives on Research and Practice in Autism and Transition.

OBJECTIVES: Individuals with autism spectrum disorder (ASD) are reported to experience significant challenges during the transition to adulthood. Although recent evidence indicates that individuals with ASD experience poor outcomes in adulthood, little is understood about the contributing factors. In this qualitative study, we investigated the barriers to and needs in research and practice in the transition to adulthood among individuals with ASD. METHODS: Thirteen researchers, including service providers, family members, and an individual with ASD participated in 30- to 60-minute, semistructured, open-ended telephone interviews. Interviews were transcribed, and data were analyzed by using an inductive approach to identify themes related to barriers to and needs in the transition to adulthood for youth with ASD. RESULTS: Stakeholders identified the need for transition planning and preparation to begin earlier and for systems to better accommodate the interests and varying abilities of individuals with ASD. Stakeholders also felt that parent and service provider expectations and perceptions influence early opportunities and experiences offered throughout the transition process. CONCLUSIONS: This study reveals the multilevel barriers to and needs in the transition to adulthood and the need for interagency and multidisciplinary collaboration and research to address the varying levels of needs, abilities, and multisector challenges.