Updates to the Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda

Emily Hotez; Madeline Haley; Julian A Martinez-Agosto; Jeffrey Anderson; Heather Brown; Kristen Choi; Lisa A Croen; Patrick Dwyer; Priyanka Fernandes; Dena Gassner; Morénike Giwa Onaiwu; Candace M Gragnani; Laura Graham Holmes; Steven Kapp; Dana Kim; Maria Massolo; Brianna Montgomery; Heini M Natri; Julianna A Rava; Kashia A Rosenau; Jeffrey Roth; Dawn Rudolph; Jackie G Ryan; Paul Shattuck; Lindsay Shea; Zachary J Williams; Rujuta B Wilson; Alice Kuo

doi:10.7759/cureus.44388

Updates to the Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda

Cureus. 2023 Aug 30;15(8):e44388. doi: 10.7759/cureus.44388. eCollection 2023 Aug.

Authors

Emily Hotez¹, Madeline Haley¹, Julian A Martinez-Agosto¹, Jeffrey Anderson¹, Heather Brown², Kristen Choi^{3

4}, Lisa A Croen⁵, Patrick Dwyer⁶, Priyanka Fernandes¹, Dena Gassner⁷, Morénike Giwa Onaiwu⁸, Candace M Gragnani⁹, Laura Graham Holmes¹⁰, Steven Kapp¹¹, Dana Kim¹², Maria Massolo¹³, Brianna Montgomery¹, Heini M Natri¹⁴, Julianna A Rava¹, Kashia A Rosenau¹, Jeffrey Roth¹, Dawn Rudolph¹⁵, Jackie G Ryan¹⁶, Paul Shattuck¹⁷, Lindsay Shea¹⁸, Zachary J Williams¹⁹, Rujuta B Wilson²⁰, Alice Kuo^{1

9

21}

Affiliations

¹ Department of Medicine, University of California Los Angeles, Los Angeles, USA.
² Department of Educational Psychology, Faculty of Education, Edmonton, CAN.
³ Department of Nursing, School of Nursing, University of California Los Angeles, Los Angeles, USA.
⁴ Department of Health Policy and Management, Fielding School of Public Health, University of California Los Angeles, Los Angeles, USA.
⁵ Division of Research, Kaiser Permanente Northern California, Oakland, USA.
⁶ Laboratory of Neurocognitive Development, Center for Mind and Brain, University of California Davis, Davis, USA.
⁷ Department of Health Sciences, School of Social Work, Adelphi University, New York, USA.
⁸ School of Humanities, University of East Anglia, Norwich, GBR.
⁹ Department of Pediatrics, University of California Los Angeles, Los Angeles, USA.
¹⁰ Department of Social Work, School of Public Health, Boston University, Boston, USA.
¹¹ Department of Psychology, University of Portsmouth, Portsmouth, GBR.
¹² Department of Research, Association of University Centers on Disabilities, Silver Spring, USA.
¹³ Department of Research, Kaiser Permanente Northern California, Oakland, USA.
¹⁴ Department of Computational Science, Translational Genomics Research Institute, Part of City of Hope Cancer Center, Phoenix, USA.
¹⁵ Department of Technical Assistance & Network Engagement, Association of University Centers on Disabilities, Silver Springs, USA.
¹⁶ Department of Neurodiversity Strategy and Education, University of Alberta, Faculty of Rehabilitation Medicine, Edmonton, USA.
¹⁷ Department of Policy Research, Mathematica, Princeton, USA.
¹⁸ Center of Policy and Analytics, A.J. Drexel Autism Institute, Drexel University, Philadelphia, USA.
¹⁹ Department of Hearing & Speech Sciences, Vanderbilt Brain Institute, Vanderbilt University, Nashville, USA.
²⁰ Department of Psychiatry, Semel Institute for Neuroscience and Human Behavior, Los Angeles, USA.
²¹ Department of Preventive Medicine, David Geffen School of Medicine, University of California Los Angeles, Los Angeles, USA.

Abstract

Introduction: Autistic individuals, now representing one in 36 individuals in the U.S., experience disproportionate physical health challenges relative to non-autistic individuals. The Health Resources and Services Administration's (HRSA) Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multi-center Research Network that aims to increase the health, well-being, and quality of life of autistic individuals. The current paper builds on the initial AIR-P Research Agenda (proposed in Year 1) and provides an updated vision for the Network.

Methods: Updates to the Research Agenda were made via the administration of a Qualtrics survey, and disseminated widely to all AIR-P entities, including the Research Node Leaders, Steering Committee, Autistic Researcher Review Board, and collaborating academic and non-academic entities. Network members were tasked with evaluating the Year 1 Research Agenda and proposing additional priorities.

Results: Within each Research Node, all Year 1 priorities were endorsed as continued priorities for research on autism and physical health. Specific topics, including co-occurring conditions and self-determination, advocacy, and decision-making, were particularly endorsed. Opportunities for exploratory studies and intervention research were identified across Research Nodes. Qualitative responses providing feedback on additional research priorities were collected.

Conclusion: The updated AIR-P Research Agenda represents an important step toward enacting large-scale health promotion efforts for autistic individuals across the lifespan. This updated agenda builds on efforts to catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health promotion.

Keywords: autism; health; mental health; neurodiversity; research.