The Autism Intervention Research Network on Physical Health Autistic Researcher Review Board

This publication is included in the Autistic Autism Scholarship Project. nine authors of this publication are identified as autistic in the project.

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Brown, H. M., Dwyer, P., Gassner, D. L., Onaiwu, M. G., Kapp, S. K., Ne'eman, A., Ryan, J. G., Waisman, T., & Williams, Z. J. (2022). The Autism Intervention Research Network on Physical Health Autistic Researcher Review Board. Pediatrics, 149(Supplement 4). https://doi.org/10.1542/peds.2020-049437f

Journal or book title
PEDIATRICS
Publisher
American Academy of Pediatrics (AAP)
Volume
149
Issue
Supplement 4
Article number
e2020049437F
Publication date: 1 Apr 2022 Added to AutiHub: 30 Sep 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
9
Publication authors identified as autistic
9 / 9 (100.0%)
  1. Heather M. Brown *
  2. Patrick Dwyer *
  3. Dena L. Gassner *
  4. Morénike Giwa Onaiwu *
  5. Steven K. Kapp *
  1. Ari Ne'eman *
  2. Jacalyn G. Ryan *
  3. TC Waisman *
  4. Zachary J. Williams *

Abstract

To increase the involvement of stakeholders in the autism research process, a committee of autistic researchers known as the Autistic Researcher Review Board (ARRB) has been established within the Autism Intervention Research Network on Physical Health (AIR-P). The ARRB includes a multinational group of academics, lecturers, and autistic consultants spanning a wide range of educational backgrounds and career stages. By harnessing the unique perspectives of ARRB members as both researchers and lived experience experts, this organization aims to ensure that the diverse perspectives of autistic individuals are appropriately considered during the conceptualization, conduction, and communication of research findings in the area of autism and physical health. The present commentary provides an introduction to the ARRB, as well as an overview of its guiding principles, research priorities, and goals for the future.Engagement of autistic individuals in the research process is crucial to ensure that autism research ultimately serves to improve the overall well-being of autistic individuals, as defined by autistic individuals.1,2 To this end, patient-oriented research3 and community-based participatory research paradigms have recently emerged. However, Pellicano et al4 suggest that autism researchers have been reluctant to engage the autistic community in research.The ARRB has been established as part of the AIR-P to serve as an innovative model for how autism researchers and autistic voices can effectively work together. The ARRB consists of a group of autistic researchers at various career points as academics, lecturers, and consultants. This gives the unique perspective as both scientists and lived-experience experts, with which to assess the merit of the proposed research projects and their relevance to improve the lives of autistic people. Our mission is to ensure that research conducted by the AIR-P: Includes the voices of autistic individuals from across the lifespan; andUltimately aims to improve the health and well-being of autistic people as defined by them.We will guide our decisions using the values of neurodiversity, well-being, and a study of physical health that reflects a deeper understanding of issues at the patient, provider, systems, and population levels and autistic individuals subjective experiences.Neurodiversity has multiple definitions. As a descriptive term, “neurodiversity” refers to the simple fact that all brains are different5 and highlights that the diversity of human brains is “every bit as crucial for the human race as biodiversity is for life in general”.6 As such, neurodiversity encompasses both “neurodivergent” and “neurotypical” people.7 However, neurodiversity refers also to a political movement with distinct social and political goals.The neurodiversity movement has its roots in the autistic community’s efforts to push back against dominant autism narratives, beginning in the early 1990s with Jim Sinclair and Autism Network International.8 While the meaning of neurodiversity continues to evolve through dialogue,7,9–12 in general, the neurodiversity movement opposes attempts to find a “cure” for autism along with interventions that promote “indistinguishability from peers,” instead advocating for greater acceptance and support of neurologic differences and adoption of more person-centered goals consistent with the preferences of autistic people.5,12Having said this, neurodiversity advocates make clear that the movement does support improving adaptive functioning and addressing the various medical problems that commonly occur in neurodivergent individuals (such as forms of epilepsy), which may inherently threaten their quality of life.13 They also support the need for caregivers, allies, and professionals to provide services and strategies that allow autistic individuals to better adapt to the world around them,13,14 consistent with protecting the rights of and promoting social inclusion for neurodivergent people.7 The neurodiversity framework’s emphasis on helping autistic individuals achieve greater quality of life as the endpoint of autism advocacy ensures that we retain a practical focus on promoting happiness and wellness, rather than ‘normalization,’ as the indication of our success.14 Autistic neurodiversity advocates have built an increasingly broad coalition with other disability groups, including many parents of non-autistic children and professional advocates.15The ARRB aims to ensure that research conducted by the AIR-P is poised to make a positive contribution to the well-being of autistic people. To achieve this aim, we have chosen to operationalize well-being for individuals on the autism spectrum within the framework of Seligman’s Positive Emotions, Engagement, Relationships, Meaning, and Accomplishment (PERMA) theory of well-being.16 Notably, this model was developed to describe and promote well-being among neurotypicals without considering how these definitions of “idealized personhood” may look different for autistic people.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 3 Oct 2026 01:01.

Cited references
34
With a DOI
27
Without a DOI, from raw bibliography text
7
8 / 34 (23.5%) cited references include at least one author identified as autistic.
References with data to complete
2 / 34 (5.9%)
References with detected author names
32 / 34 (94.1%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
7
References with raw author names still to review
1
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
95
From DOI or external metadata
95
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
1
49 / 95 (51.6%) names are linked to an author already present in AutiHub. 46 / 95 (48.4%) names are not yet linked.
Names linked to a person identified as autistic
12 / 95 (12.6%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 12 / 49 (24.5%). Distinct people identified as autistic: 10 / 85 (11.8%).
  3. Gary Yu Hin Lam , Emily Holden , Megan Fitzpatrick , Linda Raffaele Mendez , Karen Berkman (2020). “Different but connected”: Participatory action research using Photovoice to explore well-being in autistic young adults . Autism, 24(5), 1246-1259. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319898961 OpenAlex: https://openalex.org/W3002469440
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  13. Richard M. Ryan , Edward L. Deci (2000). The Darker and Brighter Sides of Human Existence: Basic Psychological Needs as a Unifying Concept . Psychological Inquiry, 11(4), 319-338. Informa UK Limited.
    Type: Article DOI: 10.1207/s15327965pli1104_03 OpenAlex: https://openalex.org/W2157987667
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  16. Ingrid Robeyns (2016). Conceptualising well-being for autistic persons . Journal of Medical Ethics, 42(6), 383-390. BMJ.
    Type: Article DOI: 10.1136/medethics-2016-103508 OpenAlex: https://openalex.org/W2333559982
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  18. Raffaele Rodogno , Katrine Krause-Jensen , Richard E Ashcroft (2016). ‘Autism and the good life’: a new approach to the study of well-being . Journal of Medical Ethics, 42(6), 401-408. BMJ.
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  20. Caroline Kassee , Stephanie Babinski , Ami Tint , Yona Lunsky , Hilary K. Brown , Stephanie H. Ameis et al. (2020). Physical health of autistic girls and women: a scoping review . Molecular Autism, 11(1), 84. Springer Science and Business Media LLC.
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  21. Denise DuBois , Stephanie H. Ameis , Meng-Chuan Lai , Manuel F. Casanova , Pushpal Desarkar (2016). Interoception in Autism Spectrum Disorder: A review . International Journal of Developmental Neuroscience, 52(1), 104-111. Wiley.
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  22. Robert Chapman * (2020). Neurodiversity, disability, wellbeing . In Neurodiversity Studies: A New Critical Paradigm (pp. 57-72). Routledge.
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  23. Andrew Cashin , Thomas Buckley , Julian Trollor , Nicholas Lennox (2018). A scoping review of what is known of the physical health of adults with autism spectrum disorder . Journal of Intellectual Disabilities, 22(1), 96-108. SAGE Publications.
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