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

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

Racial and Ethnic Disparities in Community Mental Health Use Among Autistic Adolescents and Young Adults.

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.

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.

Foster Care Involvement Among Youth With Intellectual and Developmental Disabilities.

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.

Short Report on Effectiveness of an Autistic-Delivered Peer Support Program: Preliminary Results.

There is little research on the effectiveness of autistic peer-delivered services. This study examines early outcomes associated with the Community Autism Peer Specialist program (CAPS), which was created in partnership with autistic individuals and is delivered by autistic adults who have received training in the delivery of peer support services to enhance the community functioning of autistic youth and adults. A single group pre-test/post-test design was used to examine early outcomes in the areas of independent living needs, social functioning, service engagement, and quality of life. A total of 23 individuals with autism aged 14-41 years were included in the study. Reductions were found in social functioning impairments and unmet needs after three months in the program. Participants also reported greater engagement in mental health services and activities that promote wellness compared with before the program. This study suggests that peer support services delivered by autistic peers may be an effective intervention approach for autistic youth and adults. Future studies with a more rigorous study design (e.g., randomized controlled trials), a larger sample size, and longer-term outcome measurements are needed to further investigate the effectiveness of CAPS and similar autistic-delivered services.

Short report on navigating access to care for Medicaid-enrolled autistic youth and young adults: Examining accrual of intellectual disability diagnoses in adolescence.

LAY ABSTRACT: What is known? In most states, Medicaid waivers provide individuals with an intellectual disability diagnosis generous healthcare coverage throughout adulthood. By comparison, fewer Medicaid programs are available for autistic individuals, and they are more likely to experience disruptions, or gaps, in Medicaid coverage and subsequently not re-enroll.What this paper adds? One in five autistic individuals with Medicaid coverage between ages 8 and 25 accrued a new intellectual disability diagnosis. The probability of a new intellectual disability diagnosis was higher among those who had previous disruptions in Medicaid coverage.Implications for research and policy. Expanding Medicaid to cover autistic people of all ages could decrease the need for intellectual disability diagnosis accrual. Input from autistic individuals and their families regarding their health insurance access and healthcare experiences is critically important to understanding next steps for research.

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.

Psychotropic Medication Use in Children and Youth with Autism Enrolled in Medicaid.

Children with autism frequently present with complex mental health diagnoses and psychotropic medications are often a component of comprehensive biopsychosocial treatment plans for these conditions. The purpose of this study is to provide rates and patterns of psychotropic medication use, and predictors thereof, in children and youth with autism enrolled in Medicaid across the US. This study examined national Medicaid claims from 2008 to 2016 of all children and youth with autism ages 0-21 years enrolled in Medicaid. Psychotropic medication use was examined across several child and youth characteristics, including age, co-occurring mental health conditions, sex, and race and ethnicity. About half of children and youth with autism enrolled in Medicaid had at least one psychotropic prescription in a year, a number that decreased slightly across the study period due to decreases in the prescription of antipsychotics. As new medications for autism or co-occurring conditions are developed and deployed, and as the understanding of the characteristics of the population of children with autism evolves, studying rates of medication usage helps to understand utilization patterns and differences in access to quality care.

Updates to the Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda.

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.

Unrealized Cross-System Opportunities to Improve Employment and Employment-Related Services Among Autistic Individuals.

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.

Big data in autism research: Methodological challenges and solutions.

While the concept of big data has emerged over the past decade as a hot topic in nearly all areas of scientific inquiry, it has rarely been discussed in the context of autism research. In this commentary we describe aspects of big data that are relevant to autism research and methodological issues such as confounding and data error that can hamper scientific investigation. Although big data studies can have transformative impact, bigger is not always better, and big data require the same methodological considerations and interdisciplinary collaboration as "small data" to extract useful scientific insight.

Developing "Adulting for Health": Investigating the Health Needs of Neurodivergent Emerging Adults.

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.

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

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

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

Anxiety and Depression in Autistic College Students: The Freshman Survey Results.

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.

Feeling intimidated and uncomfortable: Established and exacerbated educational inequities experienced by black parents of autistic children.

There are clear racial disparities that impact the education system. To capture the educational experiences of family members of Black autistic children as compared to white autistic children in the United States (US), a mixed methods design was implemented and included semi-structured interviews with family members of children between the ages of 5-12 who participated in a survey. The survey responses were used as attribute data. Twenty-nine interviews were conducted with parents of school-age autistic children. Findings from this study highlight challenges experienced by parents including education service use and engagement during the COVID-19 pandemic, engaging with school personnel, and securing accommodations. The findings from this study illuminate the disparities experienced by Black parents of autistic children directly reported by the parents themselves in comparison to white parents. The themes elucidated in this study have implications for policy, practice, and research to ensure equity in educational settings for Black autistic students and their families.

The Medical Home and Mental Health Services in Children and Youth with Special Health Care Needs.

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.

Association Between Medicaid Waivers and Medicaid Disenrollment Among Autistic Adolescents During the Transition to Adulthood.

This cohort study examines whether Medicaid waivers were associated with a reduced risk of Medicaid disenrollment among autistic adolescents who are transitioning to adulthood.

Prevalence of high-risk conditions for severe COVID-19 among Medicaid-enrolled children with autism and mental health diagnoses in the United States.

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.