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

Alice A. Kuo; Emily Hotez; Kashia A. Rosenau; Candace Gragnani; Priyanka Fernandes; Madeline Haley; Dawn Rudolph; Lisa A Croen; Maria L. Massolo; Laura Graham-Holmes; Paul Shattuck; Lindsay Shea; Rujuta B. Wilson; Julian A. Martinez-Agosto; Heather M. Brown; Patrick S. Dwyer; Dena L. Gassner; Steven Kenneth Kapp; Ari Ne’eman; Jackie G. Ryan; TC Waisman; Zachary J. Williams; Jessica N. DiBari; Dana M. Foney; Lauren R. Ramos; Michael D. Kogan

doi:10.1542/peds.2020-049437D

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

Alice A. Kuo, Emily Hotez, Kashia A. Rosenau, Candace Gragnani, Priyanka Fernandes, Madeline Haley, Dawn Rudolph, Lisa A Croen, Maria L. Massolo, Laura Graham-Holmes, Paul Shattuck, Lindsay Shea, Rujuta B. Wilson, Julian A. Martinez-Agosto, Heather M. Brown, Patrick S. Dwyer, Dena L. Gassner, Steven Kenneth Kapp, Ari Ne’eman, Jackie G. RyanTC Waisman, Zachary J. Williams, Jessica N. DiBari, Dana M. Foney, Lauren R. Ramos, Michael D. Kogan

Centre for Interaction, Development and Diversity

Research output: Contribution to journal › Article › peer-review

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Abstract

Objective: 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/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 three 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 Services and Systems; 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.

Conclusion: 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.

Original language	English
Article number	e2020049437D
Number of pages	8
Journal	Pediatrics
Volume	149
Issue number	Supp 4
DOIs	https://doi.org/10.1542/peds.2020-049437D
Publication status	Published - 1 Apr 2022

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10.1542/peds.2020-049437D

The Autism IRM on Physical Health Research Agenda
Alice A. Kuo etal. The Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda. Pediatrics. 149 (Supp 4). e2020049437D. DOI: 10.1542/peds.2020-049437D. © 2022 American Academy of Pediatrics. All rights reserved.
Accepted author manuscript (Post-print), 241 KB

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Kuo, A. A., Hotez, E., Rosenau, K. A., Gragnani, C., Fernandes, P., Haley, M., Rudolph, D., Croen, L. A., Massolo, M. L., Graham-Holmes, L., Shattuck, P., Shea, L., Wilson, R. B., Martinez-Agosto, J. A., Brown, H. M., Dwyer, P. S., Gassner, D. L., Kapp, S. K., Ne’eman, A., ... Kogan, M. D. (2022). The Autism Intervention Research Network on Physical Health (AIR-P) research agenda. Pediatrics, 149(Supp 4), Article e2020049437D. https://doi.org/10.1542/peds.2020-049437D

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title = "The Autism Intervention Research Network on Physical Health (AIR-P) research agenda",

abstract = "Objective: 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/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 three 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 Services and Systems; 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.Conclusion: 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.",

author = "Kuo, {Alice A.} and Emily Hotez and Rosenau, {Kashia A.} and Candace Gragnani and Priyanka Fernandes and Madeline Haley and Dawn Rudolph and Croen, {Lisa A} and Massolo, {Maria L.} and Laura Graham-Holmes and Paul Shattuck and Lindsay Shea and Wilson, {Rujuta B.} and Martinez-Agosto, {Julian A.} and Brown, {Heather M.} and Dwyer, {Patrick S.} and Gassner, {Dena L.} and Kapp, {Steven Kenneth} and Ari Ne{\textquoteright}eman and Ryan, {Jackie G.} and TC Waisman and Williams, {Zachary J.} and DiBari, {Jessica N.} and Foney, {Dana M.} and Ramos, {Lauren R.} and Kogan, {Michael D.}",

year = "2022",

month = apr,

day = "1",

doi = "10.1542/peds.2020-049437D",

language = "English",

volume = "149",

journal = "Pediatrics",

issn = "0031-4005",

publisher = "American Academy of Pediatrics",

number = "Supp 4",

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Kuo, AA, Hotez, E, Rosenau, KA, Gragnani, C, Fernandes, P, Haley, M, Rudolph, D, Croen, LA, Massolo, ML, Graham-Holmes, L, Shattuck, P, Shea, L, Wilson, RB, Martinez-Agosto, JA, Brown, HM, Dwyer, PS, Gassner, DL, Kapp, SK, Ne’eman, A, Ryan, JG, Waisman, TC, Williams, ZJ, DiBari, JN, Foney, DM, Ramos, LR & Kogan, MD 2022, 'The Autism Intervention Research Network on Physical Health (AIR-P) research agenda', Pediatrics, vol. 149, no. Supp 4, e2020049437D. https://doi.org/10.1542/peds.2020-049437D

TY - JOUR

T1 - The Autism Intervention Research Network on Physical Health (AIR-P) research agenda

AU - Kuo, Alice A.

AU - Hotez, Emily

AU - Rosenau, Kashia A.

AU - Gragnani, Candace

AU - Fernandes, Priyanka

AU - Haley, Madeline

AU - Rudolph, Dawn

AU - Croen, Lisa A

AU - Massolo, Maria L.

AU - Graham-Holmes, Laura

AU - Shattuck, Paul

AU - Shea, Lindsay

AU - Wilson, Rujuta B.

AU - Martinez-Agosto, Julian A.

AU - Brown, Heather M.

AU - Dwyer, Patrick S.

AU - Gassner, Dena L.

AU - Kapp, Steven Kenneth

AU - Ne’eman, Ari

AU - Ryan, Jackie G.

AU - Waisman, TC

AU - Williams, Zachary J.

AU - DiBari, Jessica N.

AU - Foney, Dana M.

AU - Ramos, Lauren R.

AU - Kogan, Michael D.

PY - 2022/4/1

Y1 - 2022/4/1

N2 - Objective: 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/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 three 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 Services and Systems; 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.Conclusion: 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.

AB - Objective: 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/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 three 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 Services and Systems; 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.Conclusion: 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.

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U2 - 10.1542/peds.2020-049437D

DO - 10.1542/peds.2020-049437D

M3 - Article

SN - 0031-4005

VL - 149

JO - Pediatrics

JF - Pediatrics

IS - Supp 4

M1 - e2020049437D

ER -

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

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