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

PURPOSE: We used data from the National Survey of Children's Health to (1) examine differences in economic hardship and safety net program use after the implementation of federal relief efforts, and (2) assess whether the COVID-19 pandemic exacerbated autism-based disparities in hardship and program use. METHODS: We examined five dimensions of economic hardship (poverty, food insecurity, medical hardship, medical costs, and foregone work) and four safety net programs (cash assistance, Supplemental Nutrition Assistance Program (SNAP), Special Supplemental Nutrition Program for Women, Infants and Children (WIC), and free or reduced-cost meals). First, we calculated adjusted prevalence and odds ratios to compare pre-COVID (2018-2019) and during COVID (2021) outcomes by autism status. Next, we calculated the adjusted odds of each outcome among autistic children compared to those of children with and without other special healthcare needs at both time points. RESULTS: COVID-19 exacerbated autism-based disparities in food insecurity, SNAP, and public health insurance, but alleviated inequities in medical hardship, foregone work, and cash assistance. Autistic children did not experience declines in food insecurity or increases in SNAP like other children; medical hardship and foregone work decreased more for autistic children; and the magnitude of autism-based differences in public coverage significantly increased during the pandemic. CONCLUSION: Federal relief efforts likely improved economic outcomes of children; however, these effects varied according to type of hardship and by disability group. Efforts to promote economic well-being among autistic populations should be tailored to the financial challenges most salient to low-income autistic children, like food insecurity.

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

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

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.

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.

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.

Disparities by Race and Ethnicity in Inpatient Hospitalizations Among Autistic Adults.

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.

Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations.

Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants.

The Medical Home and Use of Mental and Non-mental Specialty Services Among Children with Autism Spectrum Disorder (ASD).

This study assessed the relationship between the medical home and use of health services among children with autism spectrum disorder (ASD). Data from 2016 to 2018 National Survey of Children's Health was analyzed. Outcome measures were receipt of mental and non-mental specialty care, difficulty receiving needed mental and non-mental specialty care and unmet need for mental care. Having a medical home was associated with significantly lower odds of having unmet mental health need for children with ASD ages 11-17 (OR 0.14, 95% CI 0.07-0.30) but not for those ages 3-10 (OR 0.54, 95% CI 0.21-1.43). Having a medical home was also associated with lower odds of difficulty getting needed mental health care (OR 0.38, 95% CI 0.22-0.66) as well as non-mental specialty care (OR 0.24, 95% CI 0.13-0.44).

Hospital Inpatient Stays for Autistic Youth and Youth With Other Disabilities.

BACKGROUND: Addressing health care needs is complex in autistic youth for many reasons. Increased inpatient care that has been noted in this population, particularly for ambulatory care sensitive conditions (ACSCs), may be a marker of inadequate primary and outpatient care. METHODS: This study used data from hospital inpatient discharges from the National Inpatient Sample 2017. The prevalence, average length of stay, and the average cost per day of the 10 most common principal diagnoses for index stay were calculated for autistic youth and youth with mental, behavioral, and other neurodevelopmental disabilities (MBND), ages 0 to 17. RESULTS: Of every 1000 inpatient stays, 7.3 were for autistic youth and 65.2 for youth with MBND. The rate varied by US region and zip code-level household income. The most common diagnosis associated with stays in autistic youth was mood disorders, as in youth with MBND. Nearly all top 10 principal diagnoses for autistic youth were for ACSCs. The highest average cost per day for autistic youth was for physical injuries ($4320 per day), and the longest stays were for schizophrenia (14 days). CONCLUSIONS: High occurrence of ACSCs in autistic youth suggests that primary care may not adequately address health and mental health needs. Clinical complexity and autism characteristics may be impacting care received in the hospital. Additional considerations need to explore and examine care complexity, racial and ethnic disparities, and the large portion of Medicaid-covered youth. Strategies for the provision of care to these vulnerable populations are of great concern.

Family Perceptions of Health Care Access for Autistic Young Adults Receiving Disability Services.

BACKGROUND: Autistic young adults (YAs) often live with family and present with complex health needs. Adults with developmental disabilities (DDs) who live with family are the least likely to receive preventive health care compared with residents of other settings. No published studies have examined intersectionality between age, race or ethnicity, household income, and health needs in health care access for autistic YA. This study explored health care access among autistic YAs receiving state DD services compared with other age and disability groups. METHODS: We analyzed data from the National Core Indicator's Adult Family Survey of families of DD service users ages 18 and older who lived in the respondent's home. We used bivariate analyses and multivariable logistic regression to examine family-reported access to health care providers when needed, the role of sociodemographics, and the complexity of health care needs in predicting consistent care. RESULTS: Approximately 70% of autistic YAs had consistent access to health care when needed, similar to autistic adults but at lower rates than those with other disabilities. Odds of consistent health care access were higher among autistic YAs who were Black or lived in a rural area and lower among those with co-occurring health conditions or who needed extensive personal care support. CONCLUSIONS: Nearly one-third of autistic YAs who lived with family and receive state DD services had difficulty consistently accessing needed health care. Improved surveillance of health care services in this population is needed in addition to innovations in Medicaid waivers, which fund DD services, to address health needs and support families in accessing care.

Reproductive Health and Substance Use Education for Autistic Youth.

BACKGROUND: We provide an update on reproductive health education (RHE) and substance use prevention education (SUPE) participation for autistic youth compared with other youth with and without individualized education plans (IEPs) and 504 plans. The 800 000 autistic youth served by the US special education system need education to make informed decisions about reproductive health and substance use. METHODS: Data were from the National Longitudinal Transition Study-2012, a survey designed to yield nationally representative estimates of the experiences of US youth. Autistic youth (n = 390) who received RHE and SUPE were compared with youth with all other IEP classifications (n = 4420), with a 504 plan (n = 350), and with no IEP or 504 plan (n = 980). All youth were ≥14 years old and able to self-report on a survey. Bivariate and multivariate regression analyses were performed for each group to identify characteristics associated with RHE and SUPE receipt. RESULTS: Autistic youth reported a significantly lower rate of RHE (47.4%) and SUPE (49.6%) inclusion versus students with no IEP or 504 plan (59.2% and 57.4%, respectively). Autistic girls were more than twice as likely to report RHE receipt than autistic boys (55.1% vs 45.9%). For autistic youth, no markers for receipt of SUPE were identified. CONCLUSIONS: Autistic youth are underserved when it comes to school-based RHE and SUPE, potentially undermining self-determination and leading to poorer lifespan health trajectories. Research and policy advocacy are needed to ensure that these youth have access to RHE and SUPE.

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

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

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

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

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

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

Prevalence and Correlates of Caregiver-Reported Mental Health Conditions in Youth With Autism Spectrum Disorder in the United States.

OBJECTIVE: Mental health conditions (MHCs) have substantial personal and economic costs for children with autism spectrum disorder (ASD); yet, a current population-based prevalence estimate is lacking. METHODS: This study included 42,283 caregivers of children (ages 3-17 years) from the 2016 population-based National Survey of Children's Health. Prevalence and correlates of caregiver-reported MHCs were estimated in children with ASD and compared with those in children with intellectual disability (ID), children with special health care needs (SHCN), and "all others" (no ASD, SHCN, or ID). RESULTS: 77.7% of children with ASD had ≥ 1 MHC; 49.1% had ≥ 2. The most common MHCs were behavior/conduct problem (60.8%), anxiety problem (39.5%), attention deficit disorder (ADD)/attention-deficit/hyperactivity disorder (ADHD) (48.4%), and depression (15.7%). Substance abuse was the only MHC less common in ASD. MHCs were more common in youth with ASD versus SHCN, "all other" youth, and those with ID. MHCs were common in ASD by ages 3-5 years (44.8% ≥ 1 condition) and increased with age (85.9% ≥ 1 condition, ages 12-17 years). Among children with ASD, girls had twice the odds of an anxiety problem, those with ID had 4 times the odds of behavior/conduct problem, and those with childhood adversity had greater odds of an anxiety problem (odds ratio [OR] = 2.66) and ADD/ADHD (OR = 1.99). CONCLUSIONS: Caregiver-reported MHCs are prevalent in children with ASD in the US from a young age and characterize > 85% by adolescence. There is an outsized need for effective MHC assessment and treatment of these youth that demands expedient innovation in both MHC and developmental disability policy and practice.

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

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

Trends in Supplemental Security Income Payments to Adults With Autism.

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

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

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

Use of Vocational Rehabilitation Supports for Postsecondary Education Among Transition-Age Youth on the Autism Spectrum.

Transition-age youth with autism (TAY-ASD) experience poor employment outcomes and gaps in services that could assist them in securing jobs. Vocational rehabilitation (VR) is a source of public assistance for people with disabilities seeking employment and TAY-ASD are a growing segment of VR service users. Postsecondary education (PSE) is essential for building vocational skills, contributing to employment satisfaction and better wages. VR provides services to support PSE success. Fewer TAY-ASD received PSE training from VR (18%) than TAY with other disabilities (32%), but more than TAY with an intellectual disability (15%). TAY-ASD who received PSE training were more likely to exit VR with a job. The importance of PSE to employment should be considered in TAY-ASD who seek employment supports.

Correction to: State-Level Variation in Vocational Rehabilitation Service Use and Related Outcomes Among Transition-Age Youth on the Autism Spectrum.

The original version of this article unfortunately contained mistakes in Table 1 values. Some of the values in "TAY-ASD who received services" were incorrect. The corrected Table 1 is given below.