Report to Congress
on the Health and Well-Being of Individuals with Autism Spectrum Disorder (ASD)
Summary and Conclusion
Approximately 1 in 54 children in the U.S. has been identified with ASD,1 and the prevalence of ASD in adults has been estimated at approximately 2%.2 Defined by social and communicative difficulties, autism often co-occurs with a variety of physical and mental health conditions. Both the core characteristics of autism and these co-occurring conditions can lead to poor health outcomes in autistic individuals.11-16 Since the enactment of the Combating Autism Act in 2006, and its most recent reauthorization under the Autism CARES Act of 2019, federal departments and agencies, in partnership with the community, have made significant strides in addressing many of the pressing health and well-being needs of individuals and families affected by ASD. This Report highlights many of these federal efforts and provides recommendations to expand upon them.
Several federal departments and agencies are funding research to better understand the impact of ASD on physical and mental health and well-being:
- ACL-funded research focuses on the development of interventions to improve outcomes for individuals with disabilities such as ASD, including community living and participation among individuals with autism across the lifespan.
- Research funded by AHRQ includes a project focused on using computational approaches to mine electronic health records for ASD-related health data to enable the creation of large autism-related data sets for research.
- Through the SEED Teen initiative, CDC is collecting detailed data on topics including adolescent health, use of health care and education services, experiences with health care providers, current level of functioning (including strengths and difficulties), and parental expectations and family impacts.
- NIH funds a large portfolio of research projects seeking to understand the biology of ASD, develop improved screening and diagnostic tools, develop enhanced interventions, and improve long-term outcomes for people with ASD.
- Projects funded by the Army's ARP include those focused on investigating and improving health outcomes and promoting community inclusion (employment, education, and social inclusion) for those living with ASD.
- The ATTRI Program, led by DOT with support from ACL, seeks to develop and implement transformative applications to improve mobility options for all travelers, particularly those with disabilities.
There are also many examples of federal activities focused on improving health- and well-being-related services and supports for individuals on the autism spectrum and their families:
- HHS's Healthy People 2030 initiative objectives focus on increasing developmental screening and increasing the proportion of children with ASD who receive special services.
- ACF's efforts to increase broad developmental and behavioral screening have helped inform the early childhood field and ultimately benefit children with all disabilities, including those on the autism spectrum.
- CMS recently initiated the HCBS Special Projects contract to advance the delivery of HCBS for specific Medicaid-eligible populations, including youth with disabilities who are transitioning out of the foster care system and adults with IDD living with and cared for by aging parents and guardians.
- The HRSA-funded interdisciplinary clinics associated with the LEND and DBP training grants are making evidence-based services available to health professionals across the nation, particularly in underserved communities, to increase their understanding of ASD/DD and make them aware of emerging evidence regarding ASD evaluation and interventions.
- IHS's BH2I funds projects seeking to plan, develop, implement, and evaluate behavioral health integration with primary care, community-based settings, and/or integrating primary care, nutrition, diabetes care, and chronic disease management.
- SAMHSA's CMHI program provides funds to create systems of care: a spectrum of effective, community-based services and supports for children and youth with or at risk for mental health or other challenges and their families, organized into a coordinated network, that builds meaningful partnerships with families and youth, and addresses their cultural and linguistic needs, in order to help them to function better at home, in school and the community, and throughout life.
- NIH supports services research projects on transition-aged youth and adults with ASD, including topics such as improving competitive employment outcomes. NIH is also addressing the need for more services research aimed at adults and transition-aged youth by enriching the pool of autism researchers focused on this specific population through career development and enhancement awards.
- A DoD-funded study aims to further understand the impact of ABA services delivered to participants in the TRICARE ACD and provide important data regarding the most beneficial amount of ABA services.
- ED has recently funded 15 new personnel development grants that prepare master's level personnel (e.g., early interventionists, special educators, and related services providers) to serve children with disabilities, including children with ASD.
- DOJ recently made two awards to national providers in support of their National Training and Technical Assistance Initiative to Improve Law Enforcement-based Responses to People with Mental Health Disorders and Intellectual and Developmental Disabilities.
- The RETAIN initiative, co-funded by DOL and SSA, interconnects health care and employment by facilitating the development of approaches and strategies for people to stay at work and return to work after an injury or illness.
- The EPA provides funding to support 10 PEHSUs, which offer advice to health professionals and families on prevention, diagnosis, management, and treatment of environmentally related health effects in children, which may include ASD.
- The Community Integration Working Group, a collaborative effort between ACL, CMS, ASPE, and HUD, is working on initiatives to improve community integration for people with disabilities.
Federal agencies have also developed new programs or adapted existing programs to help mitigate the impact of the COVID-19 pandemic on the health and well-being of individuals with disabilities, including individuals on the autism spectrum, and their families:
- CDC funded 43 State and Territorial Act Early COVID-19 Response Teams, tasked with carrying out a state/territory-wide needs assessment, identifying and addressing barriers to early identification of children with ASD and other DD and identifying strategies to improve resiliency among children and families.
- HRSA's LEND training program transitioned to virtual delivery, and telehealth and teleconsultation increased during the pandemic to meet the needs of individuals with ASD/DD and their families.
- NIH created the RADx-UP initiative to reduce COVID-19 associated morbidity and mortality for vulnerable and underserved populations, including individuals with ASD and other DD, that are disproportionately affected by the SARS-CoV-2 virus.
- ED undertook a variety of activities to support families and address the needs of children with disabilities during the COVID-19 pandemic and recently announced new grant opportunities for Research to Accelerate Pandemic Recovery in Special Education.
- DOL created numerous webpages and documents to support workers with disabilities during the pandemic, including a COVID-19 resource page and information disseminated through JAN and EARN.
- OARC/NIMH sponsored a special event in April 2021 to discuss the impact of the pandemic on individuals on the autism spectrum and their families and the response of federal agencies, including the perspectives of key federal agencies and community stakeholders.
- The IACC discussed the impact of the pandemic and strategies for recovery at their July 21-22, 2021, meeting.
The members of the FIWA developed 23 recommendations to improve the health and well-being of individuals on the autism spectrum. The recommendations propose potential solutions to several critical needs, including:
- Increased federal coordination in providing services and supports;
- Improved screening and diagnostic tools;
- Optimized behavioral and other therapeutic interventions;
- Enhanced primary, preventative, and emergency care systems;
- Better treatment of co-occurring conditions;
- Recognition of caregiver mental health and support needs; and
- Improving other quality of life factors.
Adopting these recommendations and fully maximizing their potential to fill critical needs in the autism community will require the action of federal agencies, as well as state and local agencies, community and advocacy organizations, private research funders, professional associations, and others.
Moving forward, more research, services, and supports are critically needed to address the needs of individuals on the autism spectrum and their caregivers across the lifespan. In addition to focusing on physical and mental health, it is crucial to understand and appreciate the role that social determinants of health and other quality of life factors contribute to overall well-being of people on the autism spectrum. In addition, continued efforts will be needed to address racial disparities in diagnosis and access to health care and other services for individuals on the autism spectrum. Coordination of federal activities and engagement with the autism community through avenues such as the IACC will continue to play critical roles in ensuring that federal departments and agencies are able to be responsive to the evolving needs of the community and emerging opportunities to improve the health and well-being of people on the autism spectrum and their families.