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.

Sexual and reproductive health services for autistic young people in the United States: A conceptual model of utilization.

BACKGROUND: Sexual and reproductive health services promote the ability of people to have safe, satisfying, non-coercive sexual experiences and make informed decisions about pregnancy. Stakeholder input is needed to understand barriers or facilitators to service access for autistic people, who report unmet needs. METHODS: We recruited 18 autistic people, 15 parents, and 15 service providers in the United States to participate in an interview and two surveys. Using their input, we created a conceptual model of sexual and reproductive health service needs, access barriers, and facilitators. RESULTS: Stakeholders rated a variety of sexual and reproductive health services as important for autistic people, including those with intellectual disability or minimal verbal language. Stakeholders identified barriers to sexual and reproductive health service utilization including lack of service availability, lack of service providers with autism or neurodiversity training, lack of accurate information about autism and sexuality, verbal and communication differences that are not accommodated by service providers, and socio-cultural attitudes about sexuality. Stakeholders identified facilitators to service access including person-centered, trauma-informed care, service accommodations such as clear and detailed expectations, and long-enough appointments. We created a conceptual model based on the social ecological model of health to organize these utilization factors and support future research, provider, and policy action. Stakeholders provided feedback and responded favorably on the model's accuracy, utility for spurring research, practice, and policy improvements, and application to diverse groups of autistic people. CONCLUSIONS: The model shows the many feasible ways to support equitable access to services for autistic people.

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.

Expert consensus regarding indicators of a traumatic reaction in autistic youth: a Delphi survey.

OBJECTIVE: It has been suggested that the sequelae of trauma are under-recognized in youth on the autism spectrum. We aimed to generate expert consensus regarding important trauma indicators, including but not limited to traumatic stress symptoms, in autistic youth. METHODS: We recruited 72 experts in autism and/or childhood trauma. Via a 2-round Delphi survey, experts commented on and rated the importance of 48 potential indicators, drawn from PTSD criteria and a broader literature on traumatic sequelae in autism. A revised list of 51 indicators, 18 clinical guidelines developed from expert comments, and summaries of expert qualifications and ratings from Round 1 were submitted to a second round (n = 66; 92% retention) of expert review and rating. RESULTS: Twenty-two indicators reached consensus (>75% round 2 endorsement). Many, but not all, reflected PTSD criteria, including intrusions (e.g., trauma re-enactments in perseverative play/speech), avoidance of trauma-reminders, and negative alterations in mood/cognition (e.g., diminished interest in activities) and in arousal/reactivity (e.g., exaggerated startle). Experts also identified increased reliance on others, adaptive and language regressions, self-injurious behavior, and non-suicidal self-injury as important indicators. Consensus guidelines emphasized the need for tailored measures, developmentally informed criteria, and multiple informants to increase diagnostic accuracy. CONCLUSIONS: Expert consensus emphasizes and informs a need for tailored diagnostic guidelines and measures to more sensitively assess traumatic reactions in autistic youth.

Exploring potential sources of childhood trauma: A qualitative study with autistic adults and caregivers.

LAY ABSTRACT: The stressors autistic individuals encounter and experience as traumatic may vary from those not on the spectrum and typically measured. We conducted in-depth interviews with autistic adults and caregivers of children and adults on the spectrum to identify potential sources of trauma for autistic individuals and evaluate the ability of a standard trauma measure to capture those experiences. Fourteen autistic adults and 15 caregivers with varied backgrounds, clinical profiles, and histories of adversity were interviewed. Participants also completed standard measures of autism, traumatic exposures, and stress. Interviews were analyzed to record both traditional sources of trauma, for comparison with the standard measure, and distinct sources, described as traumatic only in the narratives of participants. Participants described varied experiences as traumatic. Whereas some reflected traditional traumas (e.g. maltreatment) and forms of social marginalization, others reflected conflicts between autistic characteristics and the environment (e.g. sensory trauma). All adults and most caregivers described sources of trauma in interviews not reported on the standard measure. Results have implications for assessing traumatic events in autism and for understanding their contribution to the mental health of this group.

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.

Health Needs and College Readiness in Autistic Students: The Freshman Survey Results.

With an increase in the diagnosis of autism spectrum disorder in the United States, many of whom have higher intellectual ability, there is a predicted increase in the number of college-bound students. Affected young adults face a "Services Cliff" as they transition into adulthood. Our study examined a nationally represented sample of freshman students and found that academic achievements in autistic students are comparable to their peers when they first enter college. The students however have more mental health and physical health problems compared to their non-autistic peers. Poor health maybe a major contributing factor to the lower graduation rates among autistic students. College-bound autistic students may continue to require services through college for them to be successful and graduate.

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.

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.

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.

Social Capital and Autism in Young Adulthood: Applying Social Network Methods to Measure the Social Capital of Autistic Young Adults.

Social isolation is a core challenge associated with autism. Interpersonal relationships and the resources and support embedded in the social networks of autistic young adults could impact key adult outcomes, including quality of life, mental health, employment, and independence. However, little research systematically measures the networks of autistic young adults and network impact on key adult outcomes. This article demonstrates how social network analysis can be adapted for the field of autism to measure young adult networks. We provide examples as to how this approach could be implemented to yield key insights into the amount and quality of interpersonal relationships and the types of resources embedded in the networks of autistic young adults. The network protocol was feasibility tested with autistic adults during the posthigh school transition period (n = 17, 19-27 years). The parents of three of the recruited young adults also successfully completed a complementary network survey, allowing for the inclusion of the parent-reported network using duocentric network analysis, never before applied to parent-child networks. The implementation data collected from the study suggest feasibility of egocentric and duocentric approaches, with several important modifications to adapt the measure for the field of autism. The future potential of social network research for understanding autism in adulthood is discussed.

Sexual and Reproductive Health Service Utilization and Sexuality for Teens on the Autism Spectrum.

OBJECTIVES: Health care providers and educators play critical roles in supporting healthy sexuality development for youth with autism spectrum disorder. There is limited information about the sexual behavior of these youth, especially girls, and about their access to sexuality education or health care services. METHODS: This study addressed these gaps by surveying parents of youth with autism aged 12-18 years (N = 298, 52.7% boys) with a range of intellectual functioning. RESULTS: According to parent report, most youth experienced sexual attraction and were interested in relationships, including same-sex attraction or relationships (13.2%). Girls were more likely than boys to have had a romantic relationship and less likely to have experienced school or legal consequences for sexual behavior. Around one-fifth of youth had engaged in a socially inappropriate sexual behavior, whereas 6.4% had a known sexual abuse history and 14.5% were bullied by peers for lack of sexual knowledge. Almost 40% received no sex education in school or in the community, including 60.9% of youth with parent-reported intelligence quotient under 70. Some parents consulted with school personnel (36.4%) or health care providers (55.9%) about sexuality issues, whereas 19.5% reported taking no action aside from talking to their child about sexuality. Utilization models including predisposing, enabling, and needs-related factors were applied to parent consultation with providers and use of school-based sexuality education programming. CONCLUSION: The results suggest unmet needs for sexual and reproductive health services, particularly among youth who are younger, those who have co-occurring intellectual disability, or those who are homeschooled or who attend private, charter, or therapeutic versus public schools.

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.

Correction to: Health Care Transition Planning Among Youth with ASD and Other Mental, Behavioral, and Developmental Disorders.

In the original publication of the article, Figure 1 included footnotes which duplicated information appearing in the figure caption. Therefore the notes of "NOTES: ASD = autism spectrum disorder; MBDD = mental, behavioral, or developmental disorder. Indicators presented are unadjusted estimates. x Significantly different than youth with autism spectrum disorder based on adjusted odds ratio (p < .05). y Significantly different than youth with other mental, behavioral, or developmental disorders based on adjusted odds ratio (p < .05)." have been removed. The figure 1 appearing in the original version of the article has been corrected.

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.

Health Care Transition Planning Among Youth with ASD and Other Mental, Behavioral, and Developmental Disorders.

OBJECTIVE: To estimate the prevalence of health care transition components among youth with autism spectrum disorder (ASD) aged 12-17 using the 2016 National Survey of Children's Health (NSCH), compared to youth with other mental, behavioral, or developmental disorders (MBDDs) or youth without MBDDs. METHODS: The 2016 NSCH is a nationally and state representative survey that explores issues of health and well-being among children ages 0-17. Within the NSCH, parents of a subset of youth, ages 12-17, are asked a series of questions about their youth's eventual transition into the adult health care system. The current study explores components of this transition, comparing youth diagnosed with ASD, youth with other mental, behavioral, or developmental disorders (MBDDs), and youth without MBDDs. RESULTS: Approximately 1-in-4 youth with ASD had actively worked with their doctor to understand future changes to their health care, significantly less than youth with other MBDDs and youth without MBDDs. Fewer than 2-in-5 youth with ASD had met with their doctor privately or had a parent who knew how their youth would be insured when they reached adulthood. CONCLUSIONS: The current analysis of a nationally representative sample of youth reveals discrepancies in the proportion of youth with ASD receiving appropriate health care transition planning compared to youth with other MBDDs and youth without MBDDs. These findings suggest the potential for barriers among youth with ASD to effectively transitioning into the adult health care system.

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.