Introduction

Autism Spectrum Disorder

Autism spectrum disorder (ASD) is a developmental disability (DD) identified in 1 in 54 children¹ and approximately 2% of adults.² Autism causes challenges in areas including social interaction and communication, executive functioning, sensory processing, and motor coordination. These differences can impact social relationships and other aspects of daily living. Each individual on the autism spectrum has a distinct and unique set of strengths and difficulties and may need varying levels of support in different areas. For example, some individuals on the autism spectrum have accompanying language and/or intellectual disabilities (ID) or other co-occurring physical or mental health conditions that may result in additional challenges and require specialized supports across the lifespan. Data from the Centers of Disease Control and Prevention (CDC)'s Autism and Developmental Disabilities Monitoring (ADDM) Network indicate that 33% to 53% of children on the autism spectrum have co-occurring ID.^1,3

Research using brain imaging techniques suggests that differences in development indicative of ASD may be observed as early as 6 months of age.⁴ However, overt signs and traits of ASD usually emerge between 1 and 2 years of age,⁵ though official diagnosis may be delayed even further until adolescence or adulthood due to missed diagnoses earlier in life, particularly among those without intellectual disabilities, girls, and racial minorities.^6-10 Because ASD is a lifelong condition, and the combination and degree of characteristics can differ greatly from one individual to another, its associated challenges and support needs can range from modest to very extensive.

Services and supports are available to help maximize health and well-being among children and adults on the autism spectrum, but the needs for earlier identification, improved interventions, and broadly available access to services remain issues to be addressed.

ASD continues to be a top national health priority. Federal agencies, private research and services organizations, advocacy groups, academia, state and local agencies, and other entities engage in collaborative efforts to advance ASD research and improve relevant services and support systems. This Report describes the efforts supported by federal departments and agencies to address research, health, education, and social services that will improve health and well-being among children, adolescents, and adults on the autism spectrum.

Health and Well-Being Issues Experienced by Individuals with ASD

Autistic individuals often have many health concerns, both due to the defining characteristics of autism, as well as physical and mental health conditions that often co-occur in this population. An analysis of CDC's 2010 ADDM Network data found that the mean number of co-occurring conditions or symptoms among children on the autism spectrum was 4.9 per child among 8-year-olds and 3.8 per child among 4-year-olds, with 98% and 96% of children, respectively, having at least one co-occurring condition or symptom.¹¹ Additional research has demonstrated that autistic individuals are more likely to experience conditions such as epilepsy, gastrointestinal issues, sleep disturbances, depression, anxiety, and other mental health conditions.^11,12,13 Appropriate treatment for these conditions is critical in order to improve the overall well-being of autistic individuals. Co-occurring physical and mental health conditions have been documented in research^14,15,16 as an important factor that can reduce quality of life for people on the autism spectrum when not acknowledged, recognized, and properly addressed. These conditions may contribute to the shortened lifespans of individ¬uals on the autism spectrum compared to the general population.¹⁷ (For more information on demographic factors associated with the health and well-being of individuals with ASD, see the Demographic Factors section of this Report.)

Additionally, there is a need to address the challenges faced by autistic individuals and their families for adequate health care services and supports (both private and public) and to reduce barriers to access for existing services and supports.¹⁸ In particular, advocates have highlighted the shortage of adequately trained primary care providers, specialists, and acute care providers who are familiar with ASD and its common co-occurring conditions. Many individuals on the autism spectrum also experience difficulties transitioning from pediatric to adult health care, as few adult care physicians and adult mental health professionals are trained to treat autistic patients.^18,19 Availability of trained personnel who can address health needs across the lifespan and access to health care services continue to present challenges for autistic individuals. There are also racial disparities in ASD diagnosis and access to care. For example, despite recent progress, Black children are typically evaluated for ASD later than White children.¹⁸ Additionally, studies have shown that Black, Asian, and Native American/Pacific Islander children with ASD receive fewer outpatient services compared with White children.²⁰

Advocates have also cited the importance of social determinants of health, including access to social opportunities and inclusion in all aspects of community living, as important contributors to well-being among autistic individuals.^21,22 Social determinants of health describe how the conditions in which people live, including health care access and quality, education access and quality, social and community context, economic stability, and the surrounding neighborhood and built environment, impact health and well-being. For example, access to special and general education classes, with appropriate accommodations and supports, is vital to ensure that individuals on the autism spectrum are given the opportunity to develop their abilities and potential.²³ Of particular importance is the need to prepare students to transition out of school and into higher education, employment, and/ or community living.²⁴ Lack of suitable employment opportunities and necessary accommodations remain commonly experienced obstacles to successful transition and independent living.^25,26,27 Given the spectrum of abilities of autistic individuals, increased housing options that can provide a wide range of supports are also needed. In addition, characteristics associated with ASD, such as "stimming" or communication difficulties, can potentially lead to negative experiences in interactions with police.^28,29 Innovative and continued police training programs are necessary to ensure public safety and improve interactions between the autism community and law enforcement. It is necessary to address the social determinants of health,³⁰ which include these and other environ¬mental factors, such as food³¹, economic security for individuals on the autism spectrum and their families, and ensuring access to public transportation,³² in order to improve the overall health and well-being of autistic individuals and their families.

Legislative Background: The Autism CARES Act of 2019

The Autism Collaboration, Accountability, Research, Education, and Support Act (Autism CARES Act) of 2019 (Public Law 116-60) was signed into law on September 30, 2019. The Autism CARES Act of 2019 reauthorized the ASD-related activities that began in 2006 under the Combating Autism Act (CAA) and continued under the Combating Autism Reauthorization Act (CARA) in 2011 and the Autism CARES Act of 2014, thus continuing support for federal programs related to ASD research and services.

The Autism CARES Act of 2019 authorized $1.8 billion in federal funds to sustain support for activities related to ASD research and services through 2024. The Autism CARES Act of 2019 also requires the preparation and submission of two Reports to Congress detailing federal activities relevant to ASD, including this Report concerning the health and well-being of individuals with ASD.

Provisions of the Autism CARES Act of 2019

The Autism CARES Act of 2019 includes the following provisions:

• Continues efforts in autism surveillance, research, education/awareness, early detection, and intervention, including efforts to increase cultural competency and provider training across several federal departments/agencies.
• Reauthorizes the Interagency Autism Coordinating Committee (IACC) to coordinate federal agencies in ASD-related efforts, serve as a forum for public input, and provide advice to the Secretary of the Department of Health and Human Services (HHS) on matters pertaining to ASD. Mandates the addition of the U.S. Departments of Housing and Urban Development, Justice, Labor, and Veterans Affairs to the membership of the IACC.
• Requires a Report to Congress on federal activities related to health and well-being in individuals with ASD.
• Requires a Report to Congress on activities related to autism spectrum disorder, including progress made in implementing the provisions of the Autism CARES Act of 2019.
• Authorizes $1.8 billion in appropriations for federal ASD-related efforts through September 30, 2024.
• The role of National Autism Coordinator (NAC), originally mandated by the Autism CARES Act of 2014, continues within HHS to "oversee, in consultation with the Secretaries of Defense and Education, national autism spectrum disorder research, services, and support activities," "implement autism spectrum disorder activities, taking into account the strategic plan developed by the IACC," and "ensure that autism spectrum disorder activities of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative."

Report to Congress on the Health and Well-Being of Individuals with ASD

The following elements of this Report are required by the Autism CARES Act of 2019:

• "Demographic factors associated with the health and well-being of individuals with autism spectrum disorder;"
• "An overview of policies and programs relevant to the health and well-being of individuals with autism spectrum disorder, including an identification of existing Federal laws, regulations, policies, research, and programs;"
• "Recommendations on establishing best practices guidelines to ensure interdisciplinary coordination between all relevant service providers receiving Federal funding;"
• "Comprehensive approaches to improving health outcomes and well-being for individuals with autism spectrum disorder, including (i) community-based behavioral supports and interventions; (ii) nutrition, recreational, and social activities; and (iii) personal safety services related to public safety agencies or the criminal justice system for such individuals;" and
• "Recommendations that seek to improve health outcomes for such individuals, including across their lifespan, by addressing (i) screening and diagnosis of children and adults; (ii) behavioral and other therapeutic approaches; (iii) primary and preventative care; (iv) communication challenges; (v) aggression, self-injury, elopement, and other behavioral issues; (vi) emergency room visits and acute care hospitalization; (vii) treatment for co-occurring physical and mental health conditions; (viii) premature mortality; (ix) medical practitioner training; and (x) caregiver mental health."

For the purposes of this Report, HHS has defined "health and well-being" as:

• Physical vitality and fitness;
• Behavioral and mental health;
• Access to ASD-related services and supports (health care, Social Security, etc.); and
• Sense of belonging, inclusion, and participation in meaningful activities, relationships, and community life (appropriate employment, education, housing, transportation, safety, social inclusion, etc.).

This 2021 Report to Congress on the Health and Well-Being of Individuals with Autism Spectrum Disorder (ASD) describes ASD-related activities and coordination efforts spanning multiple federal agencies and departments that include research on demographic factors associated with ASD, address different social determinants of health and support the health and well-being of autistic individuals, including during the coronavirus disease 2019 (COVID-19) pandemic, and includes recommendations on efforts and activities to improve the health and well-being of individuals on the autism spectrum. This Report includes information submitted by the Departments of Health and Human Services, Defense, Education, Housing and Urban Development, Justice, Labor, Transportation, and Veterans Affairs, as well as the Environmental Protection Agency, National Science Foundation, and Social Security Administra-tion. All departments, agencies, divisions, and offices contributing to this Report conduct activities related to individuals with ASD and/or target intellectual and developmental disabilities (IDD) more broadly while including ASD as a significant focus. The Report covers all elements required in the Autism CARES Act of 2019 for the period of fiscal years (FY) 2018, 2019, 2020, and 2021. Information for FY 2021 may not be complete, as this Report was still in preparation during FY 2021.

Please note: The terms "individuals with autism," "individuals with ASD," "autistic individuals," and "individuals on the autism spectrum" are used interchangeably throughout this document. Some members of the autism community prefer one term, while others prefer another. The Department of Health and Human Services (HHS) respects the different opinions within the community on the use of this language and does not intend to endorse any particular preference. In addition, the terms "autism" and "autism spectrum disorder (ASD)" are used interchangeably throughout this document unless otherwise noted. In cases where the specific DSM-5 defined diagnosis of autism spectrum disorder (ASD) is discussed, that term is used.