Challenges and Opportunities in Transitioning Autistic Individuals Into Adulthood.

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.

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.

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.

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.

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

Unlabelled: 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.

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

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. One in five autistic individuals with Medicaid coverage between ages 8 and 25 accrued a new intellectual disability diagnosis.

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.

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.

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.

Autistic-Delivered Peer Support: A Feasibility Study.

Peer support has been an undeveloped pathway for filling the service gap and to generate employment opportunities for autistic individuals. Peer supports have been deployed widely in mental health and among veterans and understanding the utility of this service modality among autistic individuals illuminates opportunities for research, policy, and practice. This study examined characteristics of participants in an autistic-delivered peer support program and reports on use of and satisfaction with the program.

Living arrangements and satisfaction of current arrangement among autistic adults reported by autistic individuals or their caregivers.

Background: Living arrangements is an essential component of the social environments for autistic adults. The need to understanding the status and experience of living arrangements has been highlighted.

Aim: This study examined living arrangements and satisfaction with current arrangements of autistic adults reported by autistic adults or caregivers of autistic adults.

Self-reported COVID-19 vaccination acceptance and hesitancy among autistic adults.

Identifying factors associated with COVID-19 vaccination acceptance among vulnerable groups, including autistic individuals, can increase vaccination rates and support public health. The purpose of this study was to determine differences among autistic adults who reported COVID-19 vaccination acceptance from those who did not. In this study we describe COVID-19 vaccination status and self-reported preferences among autistic adults and identify related factors.

A national profile of substance use disorder among Medicaid enrollees on the autism spectrum or with intellectual disability.

Background: Recent research has questioned the assumption that people with intellectual disability (ID) or autism spectrum disorder (ASD) are less at risk of substance use disorders (SUDs). Overall, little is known about SUDs among people with intellectual and developmental disabilities (/IDDs).

Objective: This study aimed to estimate prevalence of SUD among Medicaid enrollees with ASD, ID, or ASD + ID; characterize these groups and types of SUDs; and identify risk of SUD by demographic and clinical characteristics within groups.

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.

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.

Living arrangements and community participation among autistic adults: Exploring the possible influences of living alone or with others.

Background: With the increasing prevalence of autistic individuals, it is greatly needed to examine the factors impacting their community participation experiences. Where autistic adults live and how that may be related to their participation and quality of life is one environmental factor that has received little attention.

Aims: This study explored the association between living arrangements in the community and community participation for autistic adults.

Policy gaps and opportunities: A systematic review of autism spectrum disorder and criminal justice intersections.

The number of people with autism spectrum disorder has increased, and as this population ages, research is showing high rates of contact with the criminal justice system among this group. Social and communication differences that autistic individuals experience can act as a risk factor during these interactions, as shown by public reports of negative and violent encounters between autistic individuals and the law enforcement. There is a clear need for evidence-based strategies to reduce high rates of contact and to improve outcomes when an interaction occurs.

Preventing and improving interactions between autistic individuals and the criminal justice system: A roadmap for research.

Researchers have identified that autistic individuals are encountering the criminal justice system as victims, offenders, and witnesses at high rates. The prevalence of autism spectrum disorder (ASD) is increasing and generating a comprehensive approach to addressing criminal justice system involvement among autistic individuals is a timely and urgent need. Revisions to an established framework generated for use among individuals with mental health diagnoses, the sequential Intercept Model (SIM), were produced by an international consortium of interdisciplinary stakeholders presenting a new opportunity to identify gaps in ASD research and generate preventive solutions across the criminal justice system.

The prevalence and incidence of early-onset dementia among adults with autism spectrum disorder.

The prevalence and incidence of early-onset dementia among adults with autism spectrum disorder (ASD) is currently unknown. In this case-control study, the prevalence and incidence of early-onset dementia in individuals with ASD was examined during 2008-2012 using Medicaid Analytic eXtract files. Participants were 30-64 year-old adults who were Medicaid beneficiaries and had either a diagnosis of ASD only (n = 12,648), a diagnosis of ASD with co-occurring intellectual disability (ID) (n = 26,168), a diagnosis of ID without ASD (n = 406,570), or no ASD nor ID diagnoses (n = 798,828).

States' use of Medicaid to meet the needs of autistic individuals.

Objective: To assess the use of Medicaid programs, including waivers, to address the needs of aging autistic individuals.

Data Sources: We gathered data on Medicaid programs in place between 2004 and 2015 for 50 states and the District of Columbia from the Centers for Medicare and Medicaid Services website, by contacting state Medicaid administrators and advocacy groups, and by reviewing the Medicaid Analytic eXtract Waiver Crosswalk.

Study Design: This retrospective analysis classified each Medicaid program and documented state changes over time in eligibility criteria: those serving autism spectrum disorder only, autism spectrum disorder or intellectual disability, and intellectual disability only.

Self-reported community participation experiences and preferences of autistic adults.

Although participation in communities is a key component of health and well-being, little research has explored community participation among autistic adults. A better understanding of preferences and access to various community activities among autistic adults provides intervention and policy directions in a critical area. This study reports responses from one of the largest groups of autistic adults surveyed to date.