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Report to Congress Cover 2021

Report to Congress

on the Health and Well-Being of Individuals with Autism Spectrum Disorder (ASD)


Agency Recommendations

This chapter of the report covers Section 399DD(b)(2) (C) and (E) of the Public Health Service Act, as amended by the Autism CARES Act of 2019, which require: (C) "recommendations on establishing best practices guidelines to ensure interdisciplinary coordination between all relevant service providers receiving Federal funding"; and (E) "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".

The recommendations that follow were developed by the FIWA, an interagency working group convened by the HHS NAC to internally coordinate and consider strategies to implement federal ASD activities, taking into account the recommendations of the IACC (described in the previous section). FIWA members considered broad issues related to the health and well-being of individuals on the autism spectrum in the context of their agency missions and programs and identified areas where increased or focused activity could close gaps in research, services, and policy. In order to fully realize these recommendations, it will be necessary to combine the efforts of the federal government with those of other partners, including state and local agencies, community and advocacy organizations, private research funders, professional associations, and others.

List of Recommendations

The following recommendations are organized according to the list of topics outlined in the requirements in the Autism CARES Act of 2019 (above).

Interdisciplinary coordination of federal resources

Interdisciplinary coordination of federal resources will enable existing systems and resources to be accessed and utilized more effectively by individuals on the autism spectrum and their families.

  1. Review current federal policies and develop best practice guidelines for interdisciplinary coordination and collaboration of service providers receiving federal funding, emphasizing person- and family-centered approaches and use of evidence-based practices.
  2. Promote increased understanding of and access to systems that provide services and supports to people with ASD across the lifespan, and increase awareness of the rights and entitlements of individuals with ASD to receive these services.
    • Systems should include, but are not limited to, education, health care, employment/vocational supports, community participation/inclusion services, housing, transportation, justice systems, public safety, and legal assistance.
  3. Support state and local efforts to create coordinated systems of mental health supports for individuals with ASD across the lifespan.
    • Encourage state and local school systems to incorporate existing programs into coordinated systems of supports for mental health and social-emotional well-being.
    • Support state and local efforts to create coordinated mental health systems for adults with ASD.
    • Support workplace initiatives that ensure full access to mental health supports for workers on the autism spectrum and training on autism for employee assistance programs.
  4. Support the development of interstate/intrastate health care information exchanges to encourage interdisciplinary coordination among service providers.
  5. Track, collaborate with, and learn from the efforts of national and international organizations that are developing recommendations, guidelines, and/or best practices to address health and well-being issues relevant to the ASD community.
  6. Engage state and local organizations that receive federal and/or state funding to enhance delivery of community-based services, including services that support independent living, job training, and career development.

Screening and diagnosis of ASD in children and adults

Better screening and diagnostic methods and guidelines will result in more timely linkages to treatments and interventions for individuals on the autism spectrum.

  1. Support research to develop effective approaches and tools for the identification of autism in children and adults, as well as decreasing the time between identification of autism and referral for/access to services and interventions.
    • Assess trends in the age at first ASD diagnosis using recent population-based data to better identify disparities in the early detection of ASD in children.
    • Analyze the health and quality of life outcomes across the lifespan of individuals who have been diagnosed with ASD in differing life stages, including early childhood, adolescence, or adulthood.
    • Develop new diagnostic tools or improve existing tools to better identify autism among people whose backgrounds reflect diversity of gender, gender identity, race, ethnicity, nationality, culture, and language use.
    • Ensure that diagnostic tools used with youth and adults fully consider compensatory strategies, coping systems, communication differences, and secondary conditions that may mask or occlude key traits of autism.

Behavioral and other therapeutic interventions

Improved interventions for individuals on the autism spectrum, as well as enhanced systems to deliver these interventions, will likely have a positive effect on overall health and well-being.

  1. Develop and implement behavioral interventions and mental health supports in educational settings that will promote academic achievement for students with ASD at all levels.
  2. Support research to develop and validate measures of social and behavioral functioning that can be used to evaluate the effectiveness of interventions, services, and supports for individuals with ASD across the lifespan, including measures that are sensitive enough to detect clinically or functionally meaningful changes in outcomes.
  3. Support the development of professional training programs for educators, health care workers, and service professionals working with individuals with ASD.
    • Programs should address the needs of professionals across different disciplines and settings, encourage interdisciplinary collaboration, and/ or increase professionals' knowledge and implementation of evidence-based practices.
    • Standards and guidelines for professional development and training on autism should be developed for health care practitioners, particularly for inpatient settings in which autistic children, youth, and adults face high vulnerability for harm because of lack of sufficient training and standards on delivering appropriate care.
  4. Support research on the communication needs of individuals with ASD and improve access to tools for communication, including:
    • Research to identify factors that indicate potential for enhanced verbal or non-verbal/assisted communication ability or responsiveness to appropriate communication intervention;
    • Development of effective and diverse communication approaches and assistive technologies; and
    • Projects to increase access to, knowledge of, and training on augmentative and alternative communication (AAC) tools to facilitate different modes of communication for individuals with ASD and explore physical and mental health and wellness among AAC users on the autism spectrum.

Primary, preventative, and emergency/acute care

Improvements in the delivery of primary, preventative, and emergency care will improve overall health and well-being of individuals on the autism spectrum while potentially also reducing existing strains on the health care system.

  1. Support the development and dissemination of health literacy resources that empower autistic individuals and their families to make informed health care decisions, including resources on supported decision making, peer support, mentoring models, and patient navigation.
  2. Engage state agencies to increase awareness of existing federal Medicaid and Medicare services and support programs, including federal policies, regulations, and existing flexibilities within the law that can be used to improve the health and well-being of individuals with ASD.
  3. Support development of best practices to reduce gaps in primary care and mental health services, thereby reducing the need for emergency room visits and acute care hospitalization.
  4. Address health care disparities in individuals with ASD, including those in underserved groups (e.g., racial/ethnic minorities and rural populations) and those who have secondary conditions such as ID.
    • Reduce barriers to health care access by increasing outreach to underserved populations as well as enhancing training and resources for medical providers.
    • Increase use of telehealth and telemedicine approaches to better reach underserved populations.
  5. Increase provider awareness, tools, and training for autism and its co-occurring physical, behavioral, and mental health conditions, including symptoms and potential treatments and interventions.
    • Address sensory-related needs, healthy aging, age-appropriate health issues across the lifespan for autistic individuals, and long-term health impacts of medication on autistic individuals.
    • Develop tools and training for health care providers to enhance the quality of care for autistic patients, including for:
      • Primary care providers, to enhance the effectiveness of primary and preventative care visits for autistic patients and reduce the impact of gaps in access to specialist care;
      • Specialty care providers, to enhance the effectiveness of visits with autistic patients; and
      • Providers in acute care settings, to improve interactions with and treatment of autistic individuals.

Treatment and understanding of co-occurring physical, behavioral, and mental health conditions

Increased understanding and more effective treatment of co-occurring conditions will improve the quality of life for individuals on the autism spectrum.

  1. Engage in research that will increase understanding of the underlying mechanisms of co-occurring physical, behavioral, and mental health conditions in ASD across the lifespan and support the development of tailored supports and services, treatments, and interventions to address these conditions and improve quality of life.
  2. Support the development and improvement of behavioral, mental health, and pharmacological interventions for individuals who experience major challenges in communication, social interaction, sensory processing, and executive functioning that impact health and wellness.
  3. Gather and disseminate information on best practices related to person-centered approaches that prevent wandering of individuals with ASD, including current tracking technology, to improve the response to wandering in the public safety and public health communities.
    • Provide resources and technical assistance for teachers, public safety officers, and other community members to develop plans to address wandering of individuals with ASD.
    • Conduct research on factors that may cause autistic individuals to wander, such as fixation on specific locations, sensory overload, anxiety, emotional or physical distress or discomfort, and leaving harmful situations.
    • Develop interventions that protect health and wellness for persons inclined to wander.

Caregiver mental health and supports

Recognizing and attending to the mental health and support needs of caregivers will positively impact their lives as well as those for whom they provide care.

  1. Enhance supports and services for the caregivers of individuals with ASD to improve quality of life.
    • Support research on the needs of caregivers across the lifespan of autistic individuals.
    • Develop and increase awareness of community services that support the caregivers of autistic children and adults, including family-centered support models.
    • Increase/enhance use of telehealth/telemedicine and other forms of virtual support to caregivers, particularly populations that have been historically harder to reach and/or engage.
    • Increase providers' (e.g. physicians, school counselors, related services providers) awareness of the potential mental health needs of caregivers and the availability of mental health services and supports for caregivers.

Quality of life factors

Identifying and improving critical quality of life factors will directly and indirectly impact the health and well-being of individuals on the autism spectrum.

  1. Support activities, research, and resources that contribute to improving the overall well-being of individuals with ASD, including:
    • Activities focused on competitive integrated employment, healthy living in the community, independent or supported living options, and other factors that play direct and indirect roles in improving health and well-being;
    • Research on social determinants of health for individuals on the autism spectrum;
    • Research and resources related to assessing the abilities of people with ASD to perform real-life complex activities that may inform support or interventions to improve function and participation; and
    • Research and resources on resilience factors that support and promote positive mental health and well-being.
  1. Support research identifying effective strategies to prepare adolescents and adults on the autism spectrum for gainful employment and foster access to career pathways for adults on the autism spectrum across the life course.
  2. Gather additional population-based data to better understand, prevent, and reduce causes of premature mortality in individuals with ASD.
Agency Recommendations

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