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This study examined hospitalizations in a large, all-payer, nationally representative sample of inpatient hospitalizations in the US and identified differences in rates of hospitalization for conditions by race and ethnicity in autistic adults. Conditions examined included mood disorders, epilepsy, schizophrenia, and ambulatory care sensitive conditions (ACSCs). Compared to white, non-Hispanic autistic adults, Black, Hispanic, Asian or Pacific Islander (API), and autistic adults of another race had lower prevalence of admission for a principal diagnosis of a mood disorder. Conversely, Black, Hispanic, API, and autistic adults of another race had higher odds of admission for epilepsy than white autistic adults. Black and Hispanic autistic adults were more likely to have schizophrenia as a principal diagnosis compared to white autistic adults, but only Black autistic adults had increased odds for admission for an ACSCs compared to white autistic adults. Differences in diagnosis prevalence among hospitalized autistic adults may suggest differential access to comprehensive outpatient care that could prevent such hospitalizations, while also pointing to concerns of differential validity of diagnostic tools and treatment approaches. Insurance policy and programs should prioritize optimizing outpatient care to ensure access to care and emphasize the need for equitable treatment.

Peer support has been an undeveloped pathway for filling the service gap and to generate employment opportunities for autistic individuals. Peer supports have been deployed widely in mental health and among veterans and understanding the utility of this service modality among autistic individuals illuminates opportunities for research, policy, and practice. This study examined characteristics of participants in an autistic-delivered peer support program and reports on use of and satisfaction with the program. Half of autistic participants had a co-occurring mental health diagnosis. Participants reported multiple areas of unmet needs and participant satisfaction with the program was high (90%). The findings of this study point toward autistic-delivered peer support as a promising avenue for future development.

Medicaid is a major insurer of autistic people. However, during the transition to adulthood, autistic individuals are more likely than people with intellectual disability to lose their Medicaid benefits. Individuals with intellectual disability may have greater success maintaining Medicaid coverage during this time because most states provide coverage to individuals with intellectual disability throughout adulthood, which is not the case for autism. Using national Medicaid data from 2008 to 2016, we estimated the probability of intellectual disability diagnosis accrual among autistic Medicaid beneficiaries. Medicaid beneficiaries ages 8 to 25 with 1+ inpatient or 2+ outpatient autism spectrum disorder claims, but no intellectual disability claim, in a 12-month eligibility period were included. We used a person-month discrete-time proportional hazards model. Disruptions in Medicaid coverage were operationalized as 2+ consecutive months of no coverage before coverage resumed (yes/no). One in five autistic individuals ages 8-25 accrued an intellectual disability diagnosis. The probability of accruing an intellectual disability diagnosis was higher among autistic individuals who had disruptions in Medicaid coverage compared to those without disruptions, and peaked at age 21 (during the transition to adulthood). Expanding Medicaid to cover autistic people of all ages could decrease the need for intellectual disability diagnosis accrual and improve health outcomes for autistic adults.

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., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Lay Abstract: Most autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Research has demonstrated that autistic individuals have higher rates of police contact, however, research has seldom explored the fundamental reasons for these interactions and how this might vary across international contexts. To remedy this, the Global Autism and Criminal Justice Consortium created and disseminated the Global Criminal Justice Survey. Descriptive statistics of survey respondents with and without police contact were compared to glean differential characteristics. Frequency and type of recent police interactions (within the last 5 years) among autistic individuals were also examined to better contextualize the reasons that autistic individuals encounter police. Study findings indicated that across a global sample (i.e., North America, Scandinavia, Europe, and Oceania) nearly half of all autistic individuals had an interaction with police and that those with a history of police contact were usually older, had higher educational qualifications, and were more likely to have a co-occurring mental health or developmental disorder. Among types of interactions, noncriminal encounters, such as welfare checks, traffic incidents, wandering, and behaviors associated with autism, were most common, followed by autistic individuals alleging a crime was committed against them. These findings offer important directions for future research and for targeted policy responses that can address the unique needs of autistic individuals within the justice system., (© 2024 International Society for Autism Research and Wiley Periodicals LLC.)

Menopause is a normal part of aging and in the general population is associated with chronic conditions that impact health, mortality, and well-being. Menopause is experienced differently by autistic individuals, although no studies have investigated this topic in a large sample. The purpose of this study was to investigate rates of, and factors associated with symptomatic menopause among autistic individuals and to identify the prevalence of co-occurring conditions in symptomatic individuals. We included autistic females aged 35-70 years enrolled for 10 + months in 2014-2016 Medicare and/or Medicaid (n = 26,904), excluding those with gender dysphoria. Those with symptomatic menopause were compared to a non-symptomatic reference group on demographic, enrollment characteristics, and co-occurring conditions through logistic regression. Approximately 4% of publicly-insured autistic females aged 46-70 years had symptomatic menopause in their medical records. Intellectual disability was associated with a lower likelihood of symptomatic menopause, and being Medicare-enrolled or dual-enrolled was associated with higher likelihood of having symptomatic menopause recorded. In adjusted models, rates of ADHD, anxiety and depressive disorders, headache/migraine, altered sensory experiences, altered sexual function, and sleep disturbance were significantly higher in the symptomatic menopause sample compared to the reference group. More work to better support autistic women in discussing menopausal symptoms and co-occurring conditions with primary care providers is needed, particularly among those for whom self-report of symptoms are more challenging to ascertain. Factors associated with specific types of health care coverage warrant greater investigation to support better identification., (© 2024. The Author(s).)

Background: The autistic population is rapidly increasing; meanwhile, autistic adults face disproportionate risks for adverse COVID-19 outcomes. Limited research indicates that autistic individuals have been accepting of initial vaccination, but research has yet to document this population's perceptions and acceptance of COVID-19 boosters., Objective: This study aims to identify person-level and community characteristics associated with COVID-19 vaccination and booster acceptance among autistic adults, along with self-reported reasons for their stated preferences. Understanding this information is crucial in supporting this vulnerable population given evolving booster guidelines and the ending of the public health emergency for the COVID-19 pandemic., Methods: Data are from a survey conducted in Pennsylvania from April 11 to September 12, 2022. Demographic characteristics, COVID-19 experiences, and COVID-19 vaccine decisions were compared across vaccination status groups. Chi-square analyses and 1-way ANOVA were conducted to test for significant differences. Vaccination reasons were ranked by frequency; co-occurrence was identified using phi coefficient correlation plots., Results: Most autistic adults (193/266, 72.6%) intended to receive or received the vaccine and booster, 15% (40/266) did not receive or intend to receive any vaccine, and 12.4% (33/266) received or intended to receive the initial dose but were hesitant to accept booster doses. Reasons for vaccine acceptance or hesitancy varied by demographic factors and COVID-19 experiences. The most significant were previously contracting COVID-19, desire to access information about COVID-19, and discomfort with others not wearing a mask (all P=.001). County-level factors, including population density (P=.02) and percentage of the county that voted for President Biden (P=.001) were also significantly associated with differing vaccination acceptance levels. Reasons for accepting the initial COVID-19 vaccine differed among those who were or were not hesitant to accept a booster. Those who accepted a booster were more likely to endorse protecting others and trusting the vaccine as the basis for their acceptance, whereas those who were hesitant about the booster indicated that their initial vaccine acceptance came from encouragement from someone they trusted. Among the minority of those hesitant to any vaccination, believing that the vaccine was unsafe and would make them feel unwell were the most often reported reasons., Conclusions: Intention to receive or receiving the COVID-19 vaccination and booster was higher among autistic adults than the population that received vaccines in Pennsylvania. Autistic individuals who accepted vaccines prioritized protecting others, while autistic individuals who were vaccine hesitant had safety concerns about vaccines. These findings inform public health opportunities and strategies to further increase vaccination and booster rates among generally accepting autistic adults, to better support the already strained autism services and support system landscape. Vaccination uptake could be improved by leveraging passive information diffusion to combat vaccination misinformation among those not actively seeking COVID-19 information to better alleviate safety concerns., (©Lindsay Shea, Dylan Cooper, Jonas Ventimiglia, Shelby Frisbie, Conner Carlton, Wei Song, Mark Salzer, Brian Lee, Emily Hotez, David J Vanness. Originally published in JMIR Public Health and Surveillance (https://publichealth.jmir.org), 28.08.2024.)

Importance: Small, geographically limited studies report that people with intellectual and developmental disabilities (IDD) have increased risk for serious pregnancy-related and birth-related challenges, including preeclampsia, preterm birth, and increased anxiety and depression, than their peers. United States-based population-level data among people with IDD are lacking., Objectives: To identify perinatal and postpartum outcomes among a national, longitudinal sample of people with IDD enrolled in public health insurance, compare subgroups of people with IDD, and compare outcomes among people with IDD with those of peers without IDD., Design, Setting, and Participants: This retrospective cohort study used national Medicaid claims from January 1, 2008, to December 31, 2019, for 55 440 birthing people with IDD and a random sample of 438 557 birthing people without IDD. Medicaid funds almost half of all births and is the largest behavioral health insurer in the US, covering a robust array of services for people with IDD. Statistical analysis was performed from July 2023 to June 2024., Exposure: People who had a documented birth in Medicaid during the study years., Main Outcome and Measures: Perinatal outcomes were compared across groups using univariate and multivariate logistic regression. The probability of postpartum anxiety and depression was estimated using Kaplan-Meier and Cox proportional hazards regression., Results: The study sample included 55 440 birthing people with IDD (including 41 854 with intellectual disabilities [ID] and 13 586 with autism; mean [SD] age at first delivery, 24.9 [6.7] years) and a random sample of 438 557 birthing people without IDD (mean [SD] age at first delivery, 26.4 [6.3] years). People with IDD were younger at first observed delivery, had a lower prevalence of live births (66.6% vs 76.7%), and higher rates of obstetric conditions (gestational diabetes, 10.3% vs 9.9%; gestational hypertension, 8.7% vs 6.1%; preeclampsia, 6.1% vs 4.4%) and co-occurring physical conditions (heart failure, 1.4% vs 0.4%; hyperlipidemia, 5.3% vs 1.7%; ischemic heart disease, 1.5% vs 0.4%; obesity, 16.3% vs 7.4%) and mental health conditions (anxiety disorders, 27.9% vs 6.5%; depressive disorders, 32.1% vs 7.5%; posttraumatic stress disorder, 9.5% vs 1.2%) than people without IDD. The probability of postpartum anxiety (adjusted hazard ratio [AHR], 3.2 [95% CI, 2.9-3.4]) and postpartum depression (AHR, 2.4 [95% CI, 2.3-2.6]) was significantly higher among autistic people compared with people with ID only and people without IDD., Conclusions and Relevance: In this retrospective cohort study, people with IDD had a younger mean age at first delivery, had lower prevalence of live births, and had poor obstetric, mental health, and medical outcomes compared with people without IDD, pointing toward a need for clinician training and timely delivery of maternal health care. Results highlight needed reproductive health education, increasing clinician knowledge, and expanding Medicaid to ensure access to care for people with IDD.

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., (Copyright 2023, Mary Ann Liebert, Inc., publishers.)

Purpose: The purpose of this cohort study was to evaluate differences in rate of co-occurring mental health (MH) conditions among transition-age autistic youth (TAYA) who are Black, indigenous, and other people of color, and to identify enabling variables associated with any community MH visit in this population., Methods: Medicare-Medicaid Linked Enrollees Analytic Data Source 2012 data were used for this study. TAYA 14-29 years old who received fee-for-service Medicare, Medicaid, or both were included. Predisposing, enabling, and need variables associated with both presence of MH conditions and any community MH visit were examined with general linear modeling., Results: N = 122,250 TAYA were included. Black, Asian/Pacific Islander, and Hispanic TAYA were significantly less likely than White TAYA to have a diagnosis of substance-use, depressive, anxiety, attention-deficit hyperactivity disorder, or post-traumatic stress disorders. These groups were also significantly less likely to have had a community MH visit in the past year after controlling for predisposing, enabling, and need variables. Enabling variables associated with greater use of at least one community MH visit included dual enrollment in both Medicare and Medicaid and 12+ months of enrollment in 1115 or 1915(C) Medicaid waivers., Discussion: Service delivery factors are an important area of future research, particularly dual enrollment and coverage disparities for Black, indigenous, and other people of color TAYA. Examining coverage of managed care enrollees, including differences by state, may offer additional insights on how these factors impact care., (Copyright © 2024 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Importance: Youth with intellectual and developmental disabilities (I/DD) are more likely to be placed in foster care than other youth. Examining the clinical and sociodemographic characteristics of youth with I/DD in the foster care system is critical for identifying disparities and understanding service needs., Objective: To produce a population-level analysis of youth with I/DD in foster care that examines differences in rates of foster care involvement based on race, ethnicity, age, and sex., Design, Setting, and Participants: This cross-sectional study involved all individuals with I/DD 21 years and younger enrolled in Medicaid through foster care in 2016 via data from Transformed Medicaid Statistical Information System (T-MSIS) Analytic Files (TAF) for all 50 US states and Washington, DC. As a key insurer of I/DD services and foster care, Medicaid claims offer a timely population-level analysis. Youth with I/DD were grouped into diagnostic subgroups: autism spectrum disorder (ASD) only, intellectual disability only, or ASD and ID. The data analysis took place from July 2022 to September 2023., Exposure: TAF data contain Medicaid enrollment information by month with a binary indicator of foster care involvement, and eligibility files identify race, ethnicity, age, and sex., Main Outcomes and Measures: The period prevalence of foster care involvement was determined among I/DD youth by diagnostic subgroups using an intersectional approach across race, ethnicity, age, and sex. Logistic regression examined associations between risk for foster care involvement and race, ethnicity, age, and sex., Results: A total of 39 143 youth with I/DD had foster care involvement in 2016. Black youth (adjusted odds ratio [aOR], 1.37; 95% CI, 1.28-1.47) and females (aOR, 1.18; 95% CI, 1.1-1.27) had increased likelihood for foster care involvement. The likelihood for foster care involvement increased with age in all groups relative to the age group 0 to 5 years old., Conclusions and Relevance: This study found that among youth with I/DD, Black youth and females faced higher risk for foster care involvement, and the likelihood of foster care involvement increased with age. There is an urgent need for research that focuses on addressing system-level factors that drive increased risk. Understanding the specific health needs of Black and female youth with I/DD is critical to ensure the formation, implementation, and monitoring of equitable delivery of health services.

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., Competing Interests: Declaration of Competing Interest None., (Copyright © 2024 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

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., (© 2024. This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply.)

Lay Abstract: Children are at risk of varying severity of illness and even death from COVID-19. We aim to determine whether autistic children or children with mental health conditions have more underlying health conditions that put people at risk of severe illness from COVID-19. We use data from a national sample of Medicaid-enrolled children for the years 2008-2016. These data include children across the 50 states and the District of Columbia. We compare the prevalence of underlying conditions among autistic children and children with mental health condition to that of other children in Medicaid. This study included 888,487 autistic children, 423,397 with any mental health condition (but not autism), and 932,625 children without any of these diagnoses. We found 29.5% of autistic children and 25.2% of children with mental health conditions had an underlying condition with high risk for severe illness from COVID, compared to 14.1% of children without these diagnoses. Autistic children had over twice the odds of having any underlying conditions, when accounting for age, race, sex, and other characteristics. Children with mental health conditions had 70% higher odds of having these underlying conditions. Mitigation measures in schools and other areas could minimize risk of short- and long-term impacts from COVID for autistic and all children.

Introduction: Autistic individuals, now representing one in 36 individuals in the U.S., experience disproportionate physical health challenges relative to non-autistic individuals. The Health Resources and Services Administration's (HRSA) Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multi-center Research Network that aims to increase the health, well-being, and quality of life of autistic individuals. The current paper builds on the initial AIR-P Research Agenda (proposed in Year 1) and provides an updated vision for the Network., Methods: Updates to the Research Agenda were made via the administration of a Qualtrics survey, and disseminated widely to all AIR-P entities, including the Research Node Leaders, Steering Committee, Autistic Researcher Review Board, and collaborating academic and non-academic entities. Network members were tasked with evaluating the Year 1 Research Agenda and proposing additional priorities., Results: Within each Research Node, all Year 1 priorities were endorsed as continued priorities for research on autism and physical health. Specific topics, including co-occurring conditions and self-determination, advocacy, and decision-making, were particularly endorsed. Opportunities for exploratory studies and intervention research were identified across Research Nodes. Qualitative responses providing feedback on additional research priorities were collected., Conclusion: The updated AIR-P Research Agenda represents an important step toward enacting large-scale health promotion efforts for autistic individuals across the lifespan. This updated agenda builds on efforts to catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health promotion., Competing Interests: The authors have declared that no competing interests exist., (Copyright © 2023, Hotez et al.)

Introduction: Neurodivergent emerging adults - defined as individuals between the ages of 18 and 30 with intellectual and/or developmental disabilities (e.g., attention-deficit hyperactivity disorder (ADHD), autism, cerebral palsy, learning disabilities, seizures, developmental delays, with or without intellectual impairment) and physical and/or sensory disabilities (e.g., blindness or hearing impairment) - experience poor mental and physical health outcomes. Existing interventions are insufficient because they are not based on the self-reported and developmental needs of this population., Methods: The current study is an exploratory pilot study that features a multidimensional health-based needs assessment of self-identified neurodivergent emerging adults with ADHD, learning disabilities, autism, and other conditions, mean (M) age = 22.8; standard deviation (SD) = 3.4; n = 26). This research used validated measures. The assessment - administered via Qualtrics to the participants in two sites - included the Mental Health Continuum-Short Form, Kessler-6 Psychological Distress Scale, Project EAT (Eating and Activity over Time)-IV (with the intuitive eating, weight-related control, emotional eating, and physical activity subscales), and an original health-focused needs assessment developed by interdisciplinary healthcare professionals and neurodivergent individuals., Results: The sample reported low positive mental health, with only 3% reportedly "flourishing." The sample also reported high psychological distress according to clinical and psychometric cut-off scores; varied intuitive eating and weight-control behaviors and attitudes; and distinct needs related to integrating the principles of health promotion into daily life, navigating the healthcare system, and learning from healthcare professionals. Based on these findings, we present an initial conceptualization of "Adulting for Health," a potential virtual education program to promote health-related knowledge and capacities for this population., Conclusions: The results from this exploratory pilot study can be incorporated into existing programs and spur efforts to develop and test new interventions that can ameliorate health disparities for neurodivergent emerging adults., Competing Interests: The authors have declared that no competing interests exist., (Copyright © 2023, Hotez et al.)

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., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (Copyright 2023, Mary Ann Liebert, Inc., publishers.)

Background and Objectives: Children and youth with special health care needs (CYSHCN) commonly experience mental health concerns, but conditions are often not identified or treated within primary care. Mental health care is often not a primary focus of pediatric primary care, but the medical home model has potential to address these concerns more adequately. The purpose of this study is to examine the relationship between the medical home and use of mental health services in CYSHCN., Methods: Data came from the Medical Expenditure Panel Survey years 2015-2017, a nationally representative survey of health and healthcare in US families. The study included CYSHCN ages 6-17. We compared the use of mental health services, expenditures, and psychotropic medications across CYSHCN with and without a medical home using multivariable regression., Results: 45% of CYSHCN received care within a medical home. CYSHCN with and without a medical home reported similar frequency of office-based mental health visits (21.2% versus 25.2%), average expenditures for visits ($147 versus $128), and psychotropic medications (11.9% versus 15.1%). Medical home status was not associated with office-based mental health visits, use of psychotropic medications, or cost for either., Conclusions: CYSHCN with mental health care needs face barriers to satisfactory care. Creating better connections between primary and mental health care could help to ameliorate this problem. Findings suggest the medical home, a more comprehensive primary care model, may not address mental health care needs of CYSHCN., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Objective Mental health among undergraduate students is a growing concern in higher education, but relatively little is known about the mental health of autistic college students. In order to better understand the unique needs of this population, the present study examines whether demographic and psychosocial correlates of anxiety and depression differ in autistic first-year college students and their non-autistic peers.  Methods Secondary data analysis was conducted utilizing population-weighted data of full-time college students in their first year attending four-year colleges and universities in 2016, 2018, and 2019. Autistic and non-autistic students who self-identified as having frequent anxiety or depression were compared in terms of demographic characteristics, physical and emotional health, and academic aspirations and achievement. Results The majority of first-year students with frequent anxiety or depression in this sample tended to be white and had parents who completed a bachelor's degree or went to graduate school, with higher rates of male students in the autistic group. While autistic college freshmen with frequent anxiety or depression self-report lower overall quality of physical health (below average or lowest 10% reported by 57.3% vs. 37.1%) and higher rates of learning disabilities (25.3% vs. 4.6%) and psychological disorders (62.3% vs. 29.3%), these students also tend to outperform their non-autistic peers on standardized academic testing. Conclusion As autistic students are investing in themselves through their education and future careers, practitioners and researchers alike should be investing in accessible physical and mental health services in order to help set autistic students up for success in college and beyond., Competing Interests: The authors have declared financial relationships, which are detailed in the next section., (Copyright © 2023, Rosenau et al.)

Strengthening systems of care to meet the needs of individuals with autism spectrum disorder (ASD) is of growing importance. Administrative data provide advantages for research and planning purposes, including large sample sizes and the ability to identify enrollment in insurance coverage and service utilization of individuals with ASD. Researchers have employed varying strategies to identify individuals with ASD in administrative data. Differences in these strategies can limit the comparability of results across studies. This review describes implications of the varying strategies that have been employed to identify individuals with ASD in US claims databases, with consideration of the strengths and limitations of each approach., (© 2021. This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.)

Enrollment in Medicaid facilitates access to needed services among transition-age youth on the autism spectrum and youth with intellectual disability (ID). There are long-standing programs to ensure that individuals with ID remain enrolled as they age; similar programs for autistic youth are newer, not as widespread, and may not be as effective. We compared Medicaid disenrollment and re-enrollment between transition-age youth on the autism spectrum, youth with ID, and youth with both diagnoses using a national claims-based prospective cohort study from 2008 through 2012. Autistic youth were most likely to disenroll and least likely to re-enroll. Disenrollment peaked for all three groups at ages 19 and 21. Transition-age youth on the autism spectrum experience more disruptions in access to Medicaid-reimbursed services than youth with ID. More equitable Medicaid enrollment options for autistic individuals are needed to ensure their access to critical health care as they age.

Timely data on service use and needs across the lifespan are essential to developing an effective and efficient service delivery system that is responsive to developmental issues. This study uses data from one of the largest statewide surveys conducted between 2017 and 2018 to compare service use and unmet needs among individuals on the autism spectrum across the lifespan. A statewide sample of 5792 caregivers of autistic children and adults were included in the study. Logistic regressions were conducted to compare service use and need among six age groups ranging from early childhood (0-5 years) to later adulthood (31+) while adjusting for sociodemographic characteristics. We found that the transition-age adult group (18-21 years) was less likely to receive services, including speech/language therapy, occupational therapy, one-on-one support, and social skill training, than adolescents. However, case management and mental health services increased with age. Young adults (22-30 years) were more likely to report unmet needs than both adolescents and transition-age adult groups. The use of services overall decrease and service needs increased compared to results from an earlier statewide survey that was conducting in 2009-2010. These results can be used to inform developmentally appropriate autism-related healthcare policies and service development and delivery. This study offers a more detailed look at differences between adult age subgroups that are novel. Further research is needed about the prevalence of ASD in adulthood, clinical trajectories, and outcomes in order to support autistic adults in getting the appropriate services and supports., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Lay Abstract: Autistic adults, adults with intellectual disability, and adults with other mental health conditions may have higher risk of contracting COVID-19 or experiencing more severe illness from COVID-19 if infected. We used data from Medicaid to look at whether autistic adults and other adults with intellectual disability and other mental health conditions were more likely to have risk factors for COVID-19, such as living in a residential facility, receiving services regularly in the home from outside caregivers, having had a long hospitalization, having had avoidable hospitalizations, and having high-risk health conditions. We found that autistic adults had higher odds of living in a residential facility, receiving in-home services from outside caregivers, having had an avoidable hospitalization, and having a high-risk health condition, compared to neurotypical adults without mental health conditions. Adults with intellectual disability had similar odds of having these conditions. Adults with other mental health conditions were also more likely to live in a residential facility, receive services from outside caregivers, and have had avoidable hospitalizations compared to the neurotypical population without mental health conditions. They had three times higher odds of having a high-risk health condition. High risk of COVID-19 among autistic adults and adults with intellectual disability and mental health conditions should be recognized by clinicians, and these groups should be prioritized for vaccine outreach.

Most published autism research, and the funding that supports it, remains focused on basic and clinical science. However, the public health impact of autism drives a compelling argument for utilizing a public health approach to autism research. Fundamental to the public health perspective is a focus on health determinants to improve quality of life and to reduce the potential for adverse outcomes across the general population, including in vulnerable subgroups. While the public health research process can be conceptualized as a linear, 3-stage path consisting of discovery - testing - translation/dissemination/implementation, in this paper we propose an integrated, cyclical research framework to advance autism public health objectives in a more comprehensive manner. This involves discovery of primary, secondary and tertiary determinants of health in autism; and use of this evidence base to develop and test detection, intervention, and dissemination strategies and the means to implement them in 'real world' settings. The proposed framework serves to facilitate identification of knowledge gaps, translational barriers, and shortfalls in implementation; guides an iterative research cycle; facilitates purposeful integration of stakeholders and interdisciplinary researchers; and may yield more efficient achievement of improved health and well-being among persons on the autism spectrum at the population-level. LAY SUMMARY: Scientists need better ways to identify and address gaps in autism research, conduct research with stakeholders, and use findings to improve the lives of autistic people. We recommend an approach, based in public health science, to guide research in ways that might impact lives more quickly., (© 2022 International Society for Autism Research and Wiley Periodicals LLC.)

Background and Objectives: Autistic children and children with attention-deficit/hyperactivity disorder (ADHD) may have more frequent visits to the emergency department (ED). We aim to identify the primary reasons for ED visits among autistic children and children with ADHD, compared to a random sample of visits., Methods: Using 2008 to 2017 Nationwide Emergency Department Sample data, we assessed the most frequent primary diagnoses for ED visits among children (ages 3-12 and 13-18 years, separately) (1) with an autism diagnosis, (2) with ADHD, and (3) a random sample (1 000 000 visits). We regressed primary reasons for visits on autism or ADHD diagnosis, controlling for individual characteristics, to assess the odds of presenting for these reasons., Results: Although the 10 most frequent diagnoses among the random sample were physical health conditions, autistic children and children with ADHD often presented for psychiatric conditions. Older children with autism and with ADHD more frequently presented for mood disorders (10%-15% of visits; odds ratios [ORs] = 5.2-8.5) and intentional self-harm (ORs = 3.2-5.0). Younger children with ADHD more commonly presented with mood disorders (6.6% of visits; OR = 18.3) and younger autistic children more often presented with attention-deficit, conduct, and disruptive behavior disorders (9.7% of visits; OR = 9.7)., Conclusions: Autistic children and children with ADHD have higher odds of presenting to the ED for psychiatric conditions than a random sample, including for self-harm. Clinicians should treat these populations sensitively, recognize and assess the risk for self-harm, and facilitate continuing psychiatric care., Competing Interests: CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest relevant to this article to disclose., (Copyright © 2022 by the American Academy of Pediatrics.)

Objectives: In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda., Methods: Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement., Results: Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities., Conclusions: The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion., Competing Interests: CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest to disclose. The information, content, and/or conclusions are those of the authors 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, the US Department of Health and Human Services, or the US government., (Copyright © 2022 by the American Academy of Pediatrics.)

Competing Interests: CONFLICT OF INTEREST DISCLOSURES: The authors have no potential conflicts of interest to disclose.

Little research has examined the full-range of participation among adults on the autism spectrum. The current study addresses this knowledge gap by comparing the frequency, importance, breadth, and sufficiency of participation between autistic adults and adults in the general population. Autistic adults participated less, had fewer areas that were important to them, participated in fewer areas that were important to them, and were less satisfied with their participation even after controlling for demographic characteristics. Moreover, this study raises questions about what influences their perceptions about the breadth of activities that are important to them and the degree to which they desire to participate in those areas. Suggestions for future interventions and research are offered., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)