Little research has explored the experiences of autistic adults retroactively recalling the preparation they did (or did not) receive for adulthood. The current study explores autistic young adults’ experiences transitioning into the responsibilities and challenges of adulthood through semi-structured interviews. Seventeen autistic adults were interviewed (Mage=26.7 years). Themes related to preparation for transitioning into adulthood from high schools and families were analyzed. Data analysis was conducted through the theoretical frameworks of the Social Model of Disability (Oliver, 1990) and Transition Theory (Schlossberg, 1981). Reflexive thematic analysis (Braun Clarke, 2024a, b) was used. Participants relayed Constructive Experiences surrounding Study Strategies, Mentorship, and Learning Life Skills in preparing them self-sufficiency in adulthood, the Destructive Experiences of Discouragement and Insults from people in positions of authority and forced Suppression of their authentic selves. Participants recalled being Underestimated and Infantilized. Participants suggested that high schools offer specific Social Preparation, emphasizing Study Skills and Family Involvement in transition preparation, and offering Psychoeducation to families. Lastly, participants suggested that families practice Understanding, Acceptance, Honesty, and offer Support for Executive Functioning. This work builds on prior research of autistic individuals’ experiences by primarily focusing on preparation for employment and postsecondary education, in addition to providing primarily recommendations for how preparation services can be improved. The results from this study provide guidance on next steps for improving transition-related resources for autistic teens, families, and high schools in preparing for this critical next stage in life.

Background: Sexually transmitted infections (STIs) are prevalent in the general population. Autistic individuals, both with and without intellectual disability (ID), are potentially at increased risk due to gaps in sexual health education, increased vulnerability to sexual abuse, victimization, and disparities in access to primary and reproductive health care. Objective: This study aims to identify the prevalence of STIs and HIV among a national sample of Medicaidenrolled autistic individuals and their peers, identifying opportunities for intervention. Methods: Characteristics of autistic Medicaid beneficiaries with and without ID were stratified to compare individuals with and without chlamydia, gonorrhea, syphilis, and HIV. Period prevalence of outcomes among Medicaid enrollees with autism spectrum disorder (ASD) only, ID only, and both (ASD and ID) were compared. Results: Among autistic individuals, the prevalence of STIs and HIV was highest in the 22-30 age group and among Black enrollees, underscoring the importance of prioritizing their care through screening and preventive health measures. Conclusions: The results emphasize gaps in addressing the sexual and reproductive health needs of autistic individuals. Policymakers should prioritize funding for clinician training and increased healthcare access to address the sexual health needs of this population, especially those from additionally marginalized communities. It is vital to provide inclusive care that addresses the unique challenges faced by autistic individuals in accessing appropriate sexual health resources.

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

Background: Evidence suggests that disabled people have worse mental health than non-disabled people, but the degree to which disability contributes to mental health is unclear. Objective: This paper uses 2021 National Health Interview Survey (NHIS) data to estimate the association between disability and depression and anxiety diagnoses as well as psychological distress among adults. Methods: We calculated disability population prevalence and mental health diagnoses and associated symptoms among 28,534 NHIS respondents. Logistic regressions estimated the odds of depression or anxiety diagnoses and recent psychological distress, controlling for disability and mental health diagnoses. We measured disability using binary and continuum measures of functional disability with the Washington Group Short Set on Functioning. Results: Disabled people have significantly greater odds of both depression and anxiety diagnoses compared to non-disabled people. Those with high functional disability have 552 % greater odds of an anxiety diagnosis (95 % CI: 5.61-7.58; p < 0.01) and 697 % greater odds of a depression diagnosis (95 % CI: 6.97-9.12; p < 0.01) compared to those with no functional disability. Similarly, those with any level of functional disability are more likely to have elevated psychological distress in the past 30 days compared to those with no functional disability. Conclusions: Findings support the idea that mental health is worse for disabled people compared to non-disabled people, with increasing functional disability associated with worse mental health. This suggests that mental health is not being adequately addressed for those with the greatest functional disability. Future work should seek to better understand the systemic causes of disparities.

BACKGROUND AND OBJECTIVES:Approximately 1.2 million autistic youth will reach the legal age of adulthood over the next decade. Given dynamic changes in the socioecological context of the transition to adulthood, we produced an updated transitions research agenda reflecting the perspectives of autistic young adults, care partners (parents), and professionals who use autism research. METHODS:We conducted 9 focus groups: 4 young adult, 4 care partner, and 1 professional, with 59 total participants. Young adults were grouped by self-reported identity: (1) racial and ethnic minority, (2) lesbian, gay, bisexual, transgender, queer, intersex, asexual, and other identities, and (3) nonspeaking, in addition to a general group. We selected care partners who supported youth with varying intensity of support needs. We used rapid qualitative inquiry methods to extract key points from answers to semistructured interview questions. RESULTS:Delays in diagnosis and transition processes, and placement on wait lists resulted in significant obstacles to successful transitions. Parents assumed a dominant role by coordinating services, navigating systems and identifying opportunities for community participation, and providing direct supports. There was an overarching need for inclusion of autistic people in transitions research and consideration of cultural differences in priorities and values. Participants prioritized investigation of variation in transitions among autistic youth with intersecting identities, navigation support (eg, peer mentors), efficacy of services and supports (eg, transition and employment services), differences in available services by location, and problems within specific benefits programs. CONCLUSIONS:Research should focus on understanding population-level factors of system performance on outcomes and support needs, service delivery among marginalized groups, and transformation of complex service ecosystems.

More than 8.1 million Americans with disabilities qualify for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). Individuals with disabilities were particularly vulnerable to COVID-19, which may have altered individual and household behavior. Research on the impact of COVID-19 on individuals with disabilities and their families remains limited. Authors analyzed 2020 National Health Interview Survey data. Logistic regression models were applied, controlling for the effects of age, race, sex, income, education, employment, and health status. Households with SSI/SSDI beneficiaries with disabilities were associated with significantly greater odds of delaying or forgoing medical care and receiving needed personal and household care at home due to COVID-19 compared with households without beneficiaries. The health and well-being of households with individuals with disabilities may require more robust and inclusive social work initiatives that aim to reduce adverse pandemic impacts.

Emerging research points to high rates of major psychiatric disorders and chronic medical conditions among autistic adults. However, the unique healthcare needs of autistic adults are often overlooked, perhaps due to limitations in population-level surveillance and widespread public misconceptions about autism in adulthood. Understanding the mechanisms underlying this prevalence of poor health outcomes in autistic adults requires an exploration into the lived experiences of autistic adults across their lifespans. This study uses a qualitative approach to investigate the healthcare experiences of autistic adults. We conducted semi-structured interviews with 23 autistic adults in the United States, ranging in age from 18 to 56 years, seven of whom identified as nonbinary or gender non-conforming. We asked autistic adults about how they manage their health and interact with healthcare systems. Through thematic analysis of the data, barriers to receipt of quality care for autistic adults were identified. Results were then conceptualized through the Systems Engineering Initiative for Patient Safety model of work system and patient safety. Through this model, this study describes the interactions between autistic adults and their healthcare systems, pointing to specific areas for improvement and intervention. Overall, findings advocate for a system-level approach to improving health outcomes of autistic adults.Lay abstract Research has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes.

Despite a growing number of adults with intellectual and developmental disabilities (IDD) and documented risk for adverse outcomes as they age, little is known about the health and healthcare patterns of adults with different IDD throughout adulthood. This study uses Wisconsin Medicaid claims data to characterize health conditions among adults with IDD. Results indicate high prevalence of asthma, diabetes, heart disease, and hypertension. Heart disease rates were particularly high, having been observed among 39% of autistic adults, 64% of autistic adults with intellectual disability (ID), 67% of adults with Down syndrome, and 75% of adults with ID only. Given there are no known biological differences underlying increased morbidities among most people with IDD, developing inclusive prevention measures should be prioritized in future research.

Background Adverse childhood experiences (ACEs) have been associated with poor health outcomes in the general population. However, their impact on autistic youth remains unclear.Objective The primary objective was to understand how childhood adversity is related to the general health, mental health, and physical health of transition-age autistic youth.Participants and Setting Using data from the 2018-2021 National Survey of Children's Health, this cross-sectional study involved 2056 autistic youth aged 12-17.Methods Logistic regression was employed to test the association between three measures of ACEs - individual ACEs, cumulative ACEs, and grouped ACEs based on contexts, and health outcomes of autistic youth.Results Our study observed a high prevalence of ACEs among autistic youth, with a substantially higher proportion experiencing multiple ACEs than their neurotypical peers. Individual ACEs were significantly associated with specific health issues. Cumulative ACEs demonstrated a clear dose-response relationship with health outcomes, with higher ACE counts increasing the likelihood of experiencing poor general health, mental health conditions, and physical health issues. Moreover, grouped ACEs associated with health differently, with community-based ACEs being particularly linked to general health status, mental health conditions, and physical health conditions, while family-based ACEs correlated more with more severe mental health conditions and being overweight.Conclusion These findings collectively emphasize the importance of addressing ACEs as a public health concern among transition-age autistic youth, highlighting the need for targeted interventions, prevention strategies, and support services to mitigate the negative impact of ACEs on the overall well-being of this growing community.

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.

Objectives Measuring the value-added impact of Leadership Education in Neurodevelopmental Disabilities and Related Disorders (LEND) training on trainees’ leadership and career trajectories is necessary to understand program efficacy. In the current study, we leveraged an existing ex post facto design to develop and test a new measure of LEND competencies and compare outcomes of LEND trainees and comparison peers. Methods We developed the LEND Outcomes Follow-Up Survey using a multi-step, mixed methods process. A series of focus groups and consultations with key stakeholders identified eight important LEND leadership outcomes: (1) interdisciplinary work; (2) advocacy; (3) intersectional approach; (4) systems perspective; (5) life course perspective; (6) leadership; (7) engagement with maternal and child health populations; and (8) research experience. We developed and piloted this novel survey to measure these LEND leadership outcomes. We used data collected from this novel measure and an existing survey that is used nationally by LEND, to compare the outcomes of 43 LEND trainees and 30 comparison peers at two years post completion of LEND training. Results We found that, compared to comparison peers, LEND trainees: (1) worked with a greater number of disciplines; (2) were more likely to be engaged in advocacy; (3) were more likely to utilize a systems perspective in their work; (4) were more likely to work with maternal and child health populations; and (5) were more likely to have experience conducting research. Conclusions Our findings suggested that LEND training improves LEND leadership outcomes at two years post-completion of LEND training.

Objective: Although there has been increased attention to campus interpersonal violence, there is limited information on survivor advocacy services. Participants: We recruited participants from 155 U.S. institutions of higher education responsible for advocacy services on their campus. Methods: We used a community participatory action approach in partnership with the Campus Advocacy and Prevention Professionals Association to develop and disseminate a survey regarding campus advocacy services. Results: Participants shared critical insights about (a) advocacy staffing/caseload, (b) program structure, (c) advocacy practices, and (d) connection to services for people who had caused harm. We found that advocacy programs are often providing best practice services for survivors of violence but operating with few staff and unclear privacy protections. Conclusions: This study provided crucial preliminary information about how campuses provide advocacy services, but more researcher-practitioner engagement is needed to build on this study and establish clear practice guidelines.

Disabled and/or chronically ill people are more likely to experience sexual and intimate partner violence (SV/IPV) than those without disability and/or chronic illness. This unusually high rate of abuse is further amplified by additional identification with other minoritized identities (e.g., queer, women). Despite decades of research demonstrating that disabled and chronically ill people have a significantly increased risk of SV/IPV, their voices and experiences are often minimized or invisibilized in conversations about SV/IPV. Using an intersectional feminist framework, this chapter (1) overviews forms of harm and key terminology, (2) reviews what we know about disability, chronic illness, and SV/IPV, (3) provides considerations for working with disabled and/or chronically ill survivors (DCIS), (4) shares an idea for a relevant classroom activity, and (5) concludes with recommendations and resources.

Objectives Assessing the impact of interdisciplinary training programs is highly desirable and needed. However, there are currently no established methods to prospectively assess long-term outcomes of trainees compared to individuals who did not receive training. Our objective was to test the feasibility of a longitudinal, prospective cohort design to evaluate training outcomes, and to use this method to evaluate Leadership Education in Neurodevelopmental Disabilities and Related Disorders (LEND) training outcomes. Methods LEND trainees were matched to comparison peers and followed annually for up to five years using a pre-existing outcomes survey. We assessed study feasibility using recruitment and retention data over five years. We then looked at preliminary efficacy of LEND training in LEND trainees compared to comparison peers using the pre-existing outcomes survey. Results Overall, 68.3% of eligible trainees participated in the Outcomes Study across five years, and 66.0% were matched to comparison peers. On average, 84.4% of LEND trainees and 79.9% of comparison peers completed the outcomes survey annually. Attrition was low at 0.9% for LEND trainees and 2.6% for comparison peers over five years. LEND training demonstrated preliminary efficacy in promoting leadership development: LEND trainees began their careers engaged in more leadership activities than comparison peers, and the rate of growth in their participation in leadership activities was greater. Conclusions The design used to assess outcomes is a feasible approach that can be widely used to assess training program outcomes. Analyses suggest that LEND training is efficacious in increasing involvement in leadership activities over time after graduation.

Approximately 40% of American adults are affected by cardiovascular disease (CVD) risk factors (e.g., high blood pressure, high cholesterol, diabetes, and overweight or obesity), and risk among autistic adults may be even higher. Mechanisms underlying the high prevalence of CVD risk factors in autistic people may include known correlates of CVD risk factors in other groups, including high levels of perceived stress, poor sleep quality, and antipsychotic medication use. A sample of 545 autistic adults without intellectual disability aged 18+ were recruited through the Simons Foundation Powering Autism Research, Research Match. Multiple linear regression models examined the association between key independent variables (self-reported perceived stress, sleep quality, and antipsychotic medication use) and CVD risk factors, controlling for demographic variables (age, sex assigned at birth, race, low-income status, autistic traits). Overall, 73.2% of autistic adults in our sample had an overweight/obesity classification, 45.3% had high cholesterol, 39.4% had high blood pressure, and 10.3% had diabetes. Older age, male sex assigned at birth, and poorer sleep quality were associated with a higher number of CVD risk factors. Using antipsychotic medications was associated with an increased likelihood of having diabetes. Poorer sleep quality was associated with an increased likelihood of having an overweight/obesity classification. Self-reported CVD risk factors are highly prevalent among autistic adults. Both improving sleep quality and closely monitoring CVD risk factors among autistic adults who use antipsychotic medications have the potential to reduce risk for CVD.

Background: Although research demonstrates that autistic children are at risk of poor sleep quality, very little is known about sleep quality and its impact on quality of life in autistic adults. We investigated the relationships between sleep quality, perceived stress, and quality of life for autistic adults. Method: Data were prospectively collected from both autistic adults (N = 40) and non-autistic adults (N = 24). Sleep Quality was measured using the Pittsburgh Sleep Quality Index, Perceived Stress was measured using the Perceived Stress Scale, and Quality of Life was measured using the Brief Version of the World Health Organization Quality of Life Scale. We ran OLS regression models to examine the association between study group, perceived stress, sleep quality, and quality of life. We tested for main effects of study group (i.e., autistic or non-autistic), sleep quality, and perceived stress, adjusting for demographic characteristics. Then, we tested the interaction between study group and sleep quality. Finally, we tested a three-way interaction between group, sleep quality, and perceived stress. Results: Autistic adults reported worse sleep quality compared to non-autistic adults. Poorer sleep quality was significantly associated with lower quality of life for all participants in the study. Findings from the three-way interaction indicated that higher perceived stress further exacerbated the relationship between poorer sleep quality and lower quality of life for autistic adults. Conclusions: These findings suggest that interventions that target both sleep quality and stress could effectively improve quality of life for autistic adults.

Although epilepsy commonly presents with autism in children, it is currently unknown whether established estimates represent the prevalence and incidence of epilepsy in autistic adults. Our objective was to use population-level Medicaid data to determine prevalence, incidence, and antiepileptic drug use associated with epilepsy in a unique population of autistic adults aged 21+ with (N = 2738) and without (N = 4775) intellectual disability and to compare results to adults with intellectual disability alone (N = 18,429). We found that 34.6% of autistic adults with intellectual disability and 11.1% of autistic adults without intellectual disability had epilepsy, compared to 27.0% of adults with intellectual disability alone. New incidence of epilepsy was 23.6 incident cases per 1000 person years (95% confidence interval: 21.3, 26.2) in autistic adults with intellectual disability, 7.7 incident cases per 1000 person years (95% confidence interval: 6.6, 8.9) in autistic adults without intellectual disability, and 15.9 incident cases per 1000 person years (95% confidence interval: 15.2, 16.7) in adults with intellectual disability alone. Female sex and intellectual disability were associated with increased risk of prevalent and incident epilepsy in autistic adults. Findings underscore the importance of treating prevalent epilepsy and screening and preventing incident epilepsy in autistic adults as they age. Lay abstract Epilepsy is more common in autistic children compared to children without autism, but we do not have good estimates of how many autistic adults have epilepsy. We used data from a full population of 7513 autistic adults who received Medicaid in Wisconsin to figure out the proportion of autistic adults who have epilepsy, as compared to 18,429 adults with intellectual disability. We also wanted to assess how often epilepsy is first diagnosed in adulthood. Finally, we wanted to see whether antiepileptic drugs are being used to treat epilepsy in autistic adults. We found that 34.6% of autistic adults with intellectual disability and 11.1% of autistic adults without intellectual disability had epilepsy, compared to 27.0% of adults with intellectual disability alone. Autistic women and autistic adults with intellectual disability were more likely than autistic men and autistic adults without intellectual disability to have both previous and new diagnoses of epilepsy. Finally, we found that antiepileptic medications are commonly prescribed to autistic people who do not have epilepsy potentially to treat mental health conditions or behavior problems, and that antiepileptic medications are not always prescribed to autistic people with epilepsy even though they are indicated as a first-line epilepsy treatment. The findings of this study highlight the need to effectively treat and prevent epilepsy in autistic adults.

Emerging research tests the impact of United States Medicaid home and community-based (HCBS) waiver policy on outcomes for people with intellectual and developmental disabilities; however, this body of work has yet to be synthesized. We conducted a scoping review to establish what is known about the impact of Medicaid HCBS policy on the lives of people with intellectual and developmental disabilities. Seven studies met final inclusion criteria. Their findings contribute to preliminary evidence that Medicaid HCBS waivers provide economic benefit at the state and federal level, reduce unmet healthcare needs, increase the likelihood that parents will be able to continue working, and reduce racial disparities in access to care. Additional work should compare HCBS waiver programmes, and their causal pathways, as well as draw international comparisons to similar programming, to determine essential infrastructure needed for a successful HCBS programme.