In the United States, autistic individuals experience disparate physical- and mental-health-related quality of life across the lifespan relative to non-autistic individuals. In recognition of these disparities, the Autism Intervention Research Network on Physical Health (AIR-P) seeks to establish and maintain a research network to enhance the health and well-being across the lifespan of autistic individuals, particularly for underserved and vulnerable populations. This charter serves as the initial charter for the AIR-P; as a network, we plan to continue to revise and elaborate on the contents of this charter as our research advances and as we continue to forge new partnerships and collaborations.
The purpose of the AIR-P is to support innovative life course intervention research that promotes optimal health and well-being across the lifespan of autistic individuals in 6 key areas: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) gender, sexuality, and reproductive health, (4) health systems and services, (5) neurology, and (6) genetics. The network will establish and maintain an interdisciplinary, multicenter research network for scientific collaboration and infrastructure to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved populations.
A Neurodiversity Orientation to Health
As a network, the AIR-P aligns with the neurodiversity movement and views autism as an identity akin to gender and race, not a condition that requires a cure. This is reflected in our approach to promoting the health and well-being of autistic individuals.
A Stakeholder-Driven Approach
All research supported within the network will be vetted and/or codeveloped by the Autistic Researcher Review Board, caregivers and family members of autistic individuals, and other stakeholders.
The network will create an infrastructure for anyone, including early-career investigators and investigators seeking to begin a program of research in autism and physical health, to conduct research related to the physical health of autistic individuals. Any individual or organization may join the network, as well as access and contribute to the robust research infrastructure we are developing and maintaining.
Our network seeks to advance research on physical health beyond a medical model and deficit-oriented approach toward promoting the multidimensional health, well-being, and thriving of autistic individuals and their families.
The network seeks to address disparities in the access, quality, and utilization of health-promoting services and supports for autistic individuals, particularly for underserved or marginalized populations. The network will aim to ensure that all research supported within the network benefits participants representative of low-income, racial or ethnic minority, immigrant, female, Indigenous, geographically remote, gender identity minority, and sexual orientation minority populations. This may require modifications to usual recruitment, data collection, and analytic methods that mitigate barriers to participation.
High-Quality Research Across the Lifespan
The AIR-P seeks to advance the evidence base of high-quality research across the lifespan for autistic individuals and their families. Areas in which there is currently no existing evidence base, the AIR-P seeks to spur innovative research and engage experts across the United States to guide policy and clinical practice in these areas.
The mission of the AIR-P is to develop a robust research infrastructure that will foster measurable improvements in optimal physical health and well-being across the lifespan of autistic individuals and their families.
The AIR-P envisions a future in which autistic individuals experience optimal multidimensional health and well-being.
The following values are central to all of our activities:
Respect, integration, and equitable access to supports and services that promote optimal health and well-being for autistic individuals
Self-determination and integration of autistic individuals in all facets of the network
Individualized and culturally appropriate health care
Diversity within the network, programs, and society
Stewardship of public resources and measurable accountability
A commitment to helping individuals by strengthening communities and systems
Five Primary Goals
Establish an interdisciplinary AIR-P Network that will lead, promote, and coordinate national research activities to improve physical health and well-being across the lifespan for autistic individuals;
Advance the evidence base for autistic individuals and their families by designing a portfolio of multisite research in 6 key areas: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) gender, sexuality, and reproductive health, (4) health systems and services, (5) neurology, and (6) genetics;
Collaborate with autistic individuals in developing and carrying out research that addresses their needs, experiences, and priorities and fill the current gaps in research, practice, and policy;
Implement a pilot and feasibility funding program and corresponding scholars program to facilitate the research training and mentorship of diverse new investigators and launch the next generation of researchers in autism and physical health; and
Coordinate and facilitate the dissemination of research findings by publishing an annual research supplement, presenting at annual AIR-P, Health Resources and Services Administration, and Association of University Centers on Disabilities conferences, and developing resources for families, clinicians, and other stakeholders.
Drs Kuo, Hotez, Rosenau, Gragnani, Fernandes, and Ms Haley conceptualized the theoretical framework and methodology in this study and led the development of this manuscript; Ms Rudolph, Drs Croen, Massolo, Graham Holmes, Shattuck, Shea, Wilson, and Martinez-Agosto provided subject matter consultation and guidance on the manuscript; Dr Brown, Mr Dwyer, Ms Gassner, Dr Kapp, Mr Ne'eman, Ms Ryan, Dr Waisman, and Mr Williams provided expert guidance and consultation from research expertise and lived experience; Drs DiBari and Foney, Ms Ramos, and Dr Kogan provided technical assistance, expert consultation and feedback, and additional insight on all aspects of the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: This project is supported by the Health Resources and Services Administration of the US Department of Health and Human Services under the Autism Intervention Research Network on Physical Health, grant UT2MC39440. The information, content and/or conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by Health Resources and Services Administration, US Department of Health and Human Services, or the US Government. The funder/sponsor did not participate in the work for this article.
CONFLICT OF INTEREST DISCLOSURES: The authors have no potential conflicts of interest to disclose.