Lauren Bishop

Objective: Epilepsy and young-onset Alzheimer’s disease and related dementias [ADRD] greatly impact health and service needs. Despite their elevated prevalence in intellectual disability (ID), large scale studies of both conditions, which are known to co-occur, among subgroups of ID (i.e., Down syndrome [DS] and/or autism spectrum disorder [ASD]) are lacking. The objective of this research was to characterize the prevalence of epilepsy, young-onset ADRD, and their comorbidity in ID relative to the general population and to examine how co-occurring DS and/or ASD impacts prevalence.Methods: In this cross-sectional study of data from the Centers for Medicare and Medicaid Services (CMS; 2008-2019) from all 50 US States/District of Columbia, prevalence and odds ratios of epilepsy and young-onset ADRD were examined for all enrollees with ID between the ages of 30 and 64 years (n=847,430) and a random sample of age-matched adults from the general population without diagnoses of ID, ASD, or DS (n=1,065,530) representing both sexes and all racial/ethnic groups. Among those with ID, prevalence of these conditions was contrasted when individuals held diagnoses of DS and/or ASD.Results: Higher prevalence was observed in the ID group relative to the general population for epilepsy, young-onset ADRD, and their comorbidity. Among participants with ID, ASD was associated with the greatest epilepsy risk whereas DS was associated with the greatest risk for ADRD and epilepsy+ADRD. When DS and ASD diagnoses were considered together, interactions were observed, indicating subtle differences in the risk for these conditions among participants with both DS and ASD.Significance: These results support the importance of screening adults with ID for epilepsy and young-onset dementia. They also draw attention to subgroups of people with ID who may be at greater risk for these conditions, and the importance of evaluating the co-occurrence of these conditions among adults with ID.

Fall-related injuries are a major public health issue for older adults, contributing to mortality, morbidity, decreased functional ability, loss of independence, and increased healthcare costs. Autistic older adults may be at greater risk for falls due to motor coordination difficulties and antipsychotic medication use. This cohort study used multivariable logistic regression to compare the odds of falling and negative binomial regression to compare the rate of fall-related injuries. Data from Medicare Standard Analytical Files (2013–2021) for autistic and non-autistic older adults aged 65+ were analyzed. The sample included 13,732 autistic and 25,497 matched non-autistic older adults. Our dependent variables were (1) falls, (2) unique fall-related injuries, and (3) fall-related hospitalizations. Overall, 47.4% of autistic older adults had a fall compared to 31.5% of non-autistic older adults. Autistic older adults also had more fall-related injuries and hospitalizations. Accounting for duration of observation, autistic older adults had significantly higher odds of any fall (odds ratio = 1.99; 95% confidence interval = 1.89–2.08), rate of fall-related injuries (incidence rate ratio = 1.93; 95% confidence interval = 1.86–2.01), and rate of fall-related hospitalizations (incidence rate ratio = 1.43; 95% confidence interval = 1.35–1.51) than non-autistic older adults. These findings highlight the need for targeted fall prevention strategies for autistic older adults to reduce morbidity and mortality. Lay Falls are a big problem for older adults, often causing injuries and making it hard for them to live independently. Autistic older adults might be at higher risk of falling because of movement difficulties. However, no one has studied how often autistic older adults fall. Our study looked at the difference in fall rates, injuries, and hospitalizations between autistic and non-autistic older adults. We used Medicare data from 2013 to 2021 and included people aged 65 and older. We had 13,732 autistic older adults and 25,497 non-autistic older adults in our study. We matched them based on factors like sex, race, and health status to make sure the comparison was fair. We found that almost half (47.4%) of autistic older adults had a fall, compared to only 31.5% of non-autistic older adults. Autistic older adults also had more injuries and hospitalizations from falls. They had about double the likelihood of falling than non-autistic older adults. The rates of injuries and hospitalizations from falls were more about double for autistic older adults compared to non-autistic older adults. These results suggest that we need special programs to help prevent falls and support the health of autistic older adults.

Background: Neurocognitive disorders (i.e. dementia) are a leading cause of cognitive decline and loss of independence among older adults. While reported rates are higher among autistic adults, it is unclear whether this disparity persists after accounting for known risk factors. Objective: We compared neurocognitive disorder risk between autistic and non-autistic older adults after adjusting for known risk factors and evaluated whether risk factors moderated this disparity. We replicated our analyses among subsets of autistic older adults with and without co-occurring intellectual disability (ID). Design: Retrospective longitudinal cohort study. Setting: National Medicare Standard Analytical Files (2013–21). Participants: The sample included 9201 autistic and 18 356 non-autistic older adults aged 65 or older, who were matched on demographic and clinical characteristics. Methods: Our dependent variable was time to neurocognitive disorder, defined as years between age 65 or older and the date of first diagnosis. Results: Autistic older adults had a 20% higher adjusted risk of neurocognitive disorders than non-autistic older adults (95% CI = 14%–25%; P < .001). Risk was highest among autistic adults with co-occurring ID [adjusted subhazard ratio (SHR) = 1.46; 95% CI = 1.36–1.57]. The disparity between cohorts was amplified in the presence of most known risk factors, notably hypertension (SHR = 2.04; 95% CI = 1.79–2.32), high cholesterol (SHR = 1.60; 95% CI = 1.46–1.75), depression (SHR = 1.52; 95% CI = 1.42–1.62), and type 2 diabetes (SHR = 1.45; 95% CI = 1.36–1.55). Conclusions: Autistic older adults, particularly those with ID, face significantly higher risk of neurocognitive disorders even after adjusting for known risk factors. These findings emphasise that risk factors may impact the autistic population differently and highlight the need for early screening and tailored prevention strategies.

Applied behavior analysis is a widely used intervention for autistic youth, though its mental health impacts remain under-researched. This study aims to investigate the association between applied behavior analysis therapy and post-traumatic stress disorder, suicidality, mental health hospitalization rates, and length of mental health hospitalizations using a national database of privately insured youth under 18. We matched 17,120 autistic youth who received applied behavior analysis with a control group of autistic youth with no record of applied behavior analysis and clustered them into four applied behavior analysis dose groups using two-stage bisecting k-medians clustering. Then, we used negative binomial regression and logistic regression to compare outcomes for the applied behavior analysis and non-applied behavior analysis groups. Overall, applied behavior analysis receipt was associated with 30% higher odds of experiencing a mental health hospitalization (odds ratio = 1.30, p < 0.001) and a 32% higher incidence rate of these hospitalizations (incidence rate ratio = 1.32, p < 0.001). Our analysis found no relationship between applied behavior analysis dosing and the other tracked mental health outcomes. These results indicate the need for more quantitative analysis with more comprehensive records of applied behavior analysis receipt to fully investigate claims of ABA resulting in adverse adult mental health outcomes. Lay Autistic youth often receive applied behavior analysis (ABA) therapy, but some autistic adults who had ABA as youth say it harmed their mental health as adults. We looked at the relationship between ABA and post-traumatic stress disorder (PTSD), suicidality, mental health hospitalization rates, and length of mental health hospitalizations among autistic youth. We used private health insurance claims data to look at how ABA receipt was related to those mental health outcomes. We divided autistic youth into groups based on how much ABA they received, so we could see if different amounts of ABA had different associations with mental health. There were 17,120 autistic youth in the group that did not receive ABA, and 17,120 autistic youth in the group that did receive ABA. In this sample, ABA therapy was associated with a greater use of acute mental health services; autistic youth in the ABA group had an overall risk that was 30% higher for mental health hospitalizations; and a 32% greater frequency of mental health hospitalizations. These results suggest that there may be a relationship between mental health hospitalizations and getting ABA. However, more work is needed to fully understand the impact of ABA therapy on mental health outcomes.

This study examined how autistic adults conceptualize health and whether their conceptualizations differed substantively from those of their emergency contacts (people who helped with health or healthcare management). We conducted semi-structured interviews with 10 dyads of autistic adults and emergency contacts. A thematic analysis with deductive and inductive codes identified four main themes: (1) health is subjective well-being; (2) healthy is the absence of pain; (3) challenging neurotypical norms; and (4) differences in health definitions were smaller than perceived. Autistic participants and emergency contacts endorsed the first two themes. Only autistic participants discussed the third theme. Despite broad agreement about what “healthy” means, emergency contacts perceived significant differences between their definition of health and that of their autistic counterpart. The data suggest these differences were primarily about health behaviors. We present a model for a Personalized Health Ecosystem, describing important factors for personal conceptualization of health among autistic adults. These findings demonstrate the need for individualized care, for healthcare providers to partner with autistic patients to best support their health, and for education programs for providers who work with this community. Lay Autistic adults experience worse health and have a higher risk of mortality on average. Many autistic adults say that physicians and other healthcare providers do not understand autism and autistic people’s needs. This study wants to understand how autistic adults specifically understand healthy habits as this could inform better care. We interviewed 10 autistic adults and their emergency contacts (family or friends who help them with healthcare decisions) about how they understand health and what they do to be healthy. We compared what the two groups said. Both autistic adults and their emergency contacts said that being healthy could look different for everyone. Beyond physical health, participants talked about mental, financial, and spiritual health. Participants described “healthy” as the absence of pain, though the fact that you can be in pain and healthy was mentioned. Autistic adults and their emergency contacts described health similarly. Autistic adults, however, shared more non-traditional health-promoting behaviors. These findings can help healthcare providers better understand how to work with autistic patients. Physicians should work with autistic patients on how to be healthy, rather than assume that autistic adults do not understand health.

This study assesses changes in self-reported health and healthcare status among adults with intellectual and developmental disabilities (I/DD) over the past 20 years, utilizing data from the National Health Interview Survey. We conducted a cross-sectional analysis of 601 464 adults 18 and older, categorized by disability status: no functional limitations, developmental disabilities, intellectual disabilities, and other functional limitations. We aimed to identify trends in health status, healthcare access, affordability, and utilization from 1999 to 2018, comparing outcomes across disability groups. Results indicate adults with intellectual disabilities reported poorer health compared to those without functional limitations, particularly in the most recent period (2014-2018). Adults with developmental disabilities exhibited increased odds of poor health during 2009-2013 compared to 1999-2003, but no significant differences occurred between other periods. Additionally, poverty rates for adults with I/DD were higher, with a substantial proportion of adults with intellectual disabilities living in poverty compared to those without functional limitations, indicating persistent disparities without significant trend improvements. Despite advancements in healthcare access and affordability, self-reported health outcomes for adults with I/DD have not improved, highlighting the need for policies to enhance care quality. Future research should focus on effective healthcare practices and provider training to address these persistent disparities.

This exploratory study used the Future of Families and Child Wellbeing Study (FFCWS) to compare the financial well-being of families of adolescents with and without autism. Recognizing the gap in autism research, which predominantly measures financial well-being through household income, this study employed a multidimensional approach, including indicators of assets, material hardships, and both formal and informal safety net access. We found that families with autistic adolescents experienced greater financial instability, including a higher likelihood of substantial income drops and bankruptcy. Despite similar access to food assistance programs, food insecurity was notably higher among these families, especially in the lowest income brackets where nearly all families utilized food assistance. Furthermore, material hardship prevalence (46.4%) exceeded income poverty (29.8%), among families with autistic adolescents. A substantial proportion of middle- to high-income families also experienced hardships, had no assets, and lacked connection to safety net programs, suggesting that income-based metrics may not fully capture the financial challenges families face. The findings highlight the need for policies that acknowledge the broader financial needs of families with autistic adolescents, underscoring the inadequacies of current support systems. Lay Our study looks at how families with autistic teenagers manage financially compared with families with teenagers who do not have autism. We know that money matters are a big part of life’s overall quality and that autistic individuals and their families often face more financial challenges. These challenges can affect their health, social connections, and access to needed services. What our research adds is a closer look at these financial difficulties by considering not just how much money a family has but also what they own, their struggles to meet basic needs, and the help they get from both government programs and their own social circles. We found that families with autistic teenagers often deal with more financial problems, including not having enough food, even though they might be using available support programs. This is important because it shows us that the current ways of helping may not be enough. Our findings suggest we need to think more broadly about how to support these families. This could mean making policies that better address their unique needs or coming up with new ways to help them that go beyond just looking at income. Understanding these challenges better can help us make life better for autistic individuals and their families.

Background: Better identification of autistic people and increased life expectancy for people with intellectual and developmental disabilities have given rise to an urgent need to better understand end-of-life care in autistic people. We compared hospice utilization of autistic older adults with non-autistic older adults and examined if known inequities in hospice utilization among the general population are exacerbated among autistic older adults. Methods: We analyzed hospice claims from Medicare, which insures Americans older than 65 years and covers hospice costs. Our sample included 5468 autistic older adults and 10,934 matched population comparison older adults who died during 2013–2021. We used multivariable logistic regression to compare these groups on the odds of any, early, intermediate, and late hospice utilization. We defined early hospice utilization as at least 28 days before death, intermediate as 4–27 days before death, and late as within 3 days of death. Interaction terms were used to assess whether effects were modified by beneficiary’s sex, race, or rurality. In a sensitivity analysis, we repeated our analyses in unmatched samples. Results: The autistic older adult and matched population comparison groups had similar odds of any hospice utilization (odds ratio [OR]: 1.05; 95% confidence interval [CI]: 0.98–1.13), early (OR: 1.01; 95% CI: 0.91–1.11), intermediate (OR: 1.03; 95% CI: 0.95–1.13), and late hospice (OR: 1.07; 95% CI: 0.96–1.19). In our models evaluating the impact of other known inequities, we did not find significant interactions between autism diagnostic status and sex, race, or rurality. Results were similar in the unmatched samples. Conclusion: Given the body of literature documenting health disparities in autistic people, our findings are heartening, suggesting that Medicare-enrolled autistic older adults experience similar receipt and timing of hospice as their non-autistic peers. Our findings highlight the potential power of health policies that provide zero-cost, universal benefits to Americans in reducing health care utilization disparities among autistic people. Community Brief: Why is this an important issue?: Autistic people may use health care services less than non-autistic peers. It is important to understand differences in health care use and end-of-life care in older adulthood. This information will be useful to autistic people and their families for future planning as well as to the health care system for preparing to meet the needs of aging autistic adults. What was the purpose of this study?: Hospice care focuses on comfort and quality of life before death when a person is diagnosed with a progressive condition from which they are not expected to recover. The purpose of this study was to compare the hospice use of Medicare-enrolled autistic older adults with that of non-autistic older adults. What did the researchers do?: We analyzed hospice claims from Medicare, a government-funded insurance program that provides coverage for Americans older than 65 and fully covers hospice costs. We identified 5468 autistic older adults who died and matched them to 10,934 non-autistic older adults who died. Matching involves creating a comparison group of non-autistic individuals who have similar characteristics to the autistic sample, including sex, race, and rurality. We compared groups on the odds of any, early, intermediate, and late hospice use. We defined early hospice use as at least 28 days before death, intermediate as 4–27 days before death, and late as within 3 days of death. We looked at whether differences between groups differed based on sex, race, or rurality. We also repeated our analyses in unmatched samples of autistic and non-autistic older adults. What were the results of this study?: Autistic older adults and non-autistic older adults had similar odds of any, early, intermediate, and late hospice use. Sex, race, and rurality had similar effects on the odds of hospice use among autistic and non-autistic older adults. Results were similar in the matched and unmatched samples. What do these findings add to what was already known?: While multiple other studies have identified disparities in health care utilization in autistic people, this study suggests that these disparities may decrease as autistic people age and have access to comprehensive insurance with universal, no-cost benefits such as Medicare. Hospice care is an area in which autistic people may not experience disparities. What are the potential weaknesses of this study?: Findings may not predict hospice use among future generations of autistic older adults because the older adults in this study were born and raised before access to modern diagnoses and supports. Some autistic older adults may have been miscategorized as non-autistic. How will these findings help autistic adults now or in the future?: Our findings may provide some comfort about the unknowns of aging for Medicare-enrolled autistic older adults, as they have similar use of hospice compared with their non-autistic peers. Disparities that may exist for other health care services earlier in life may not persist into end-of-life care. Our findings may also be used to advocate for more health policies that provide zero-cost, universal benefits to reduce health care use disparities among autistic people.

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 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.

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.