The Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda

Author:

Kuo Alice A.123,Hotez Emily1,Rosenau Kashia A.3,Gragnani Candace2,Fernandes Priyanka1,Haley Madeline1,Rudolph Dawn4,Croen Lisa A.5,Massolo Maria L.5,Holmes Laura Graham6,Shattuck Paul7,Shea Lindsay8,Wilson Rujuta1,Martinez-Agosto Julian A.1,Brown Heather M.9,Dwyer Patrick S.R.1011,Gassner Dena L.1213,Kapp Steven K.14,Ne'eman Ari15,Ryan Jacalyn G.16,Waisman TC17,Williams Zachary J.18192021,DiBari Jessica N.22,Foney Dana M.22,Ramos Lauren R.23,Kogan Michael D.22, ,

Affiliation:

1. Departments of Medicine and

2. Pediatrics

3. Graduate School of Education and Information Studies, University of California, Los Angeles, Los Angeles, California

4. Association of University Centers on Disabilities, Silver Spring, Maryland

5. Kaiser Permanente Northern California, Los Angeles, California

6. Boston University School of Public Health, Boston, Massachusetts

7. Mathematica Policy Research, Princeton, New Jersey

8. AJ Drexel Autism Institute, Philadelphia, Pennsylvania

9. Faculty of Education, Department of Educational Psychology

10. Center for Mind and Brain

11. Department of Psychology, University of California Davis, Davis, California

12. School of Social Work, Adelphi University, Garden City, New York

13. Department of Health Sciences, Towson University, Towson, Maryland

14. Department of Psychology, University of Portsmouth, Portsmouth, United Kingdom

15. Harvard University, Cambridge, Massachusetts

16. Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Alberta, Canada

17. University of Calgary, Calgary, Alberta, Canada

18. Medical Scientist Training Program, Vanderbilt University School of Medicine, Nashville, Tennessee

19. Department of Hearing and Speech Sciences, Vanderbilt University Medical Center, Nashville, Tennessee

20. Vanderbilt Brain Institute

21. Frist Center for Autism and Innovation, Vanderbilt University, Nashville, Tennessee

22. Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Maryland

23. Division of MCH Workforce Development

Abstract

OBJECTIVES In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.

Publisher

American Academy of Pediatrics (AAP)

Subject

Pediatrics, Perinatology and Child Health

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