Participatory Research

Glossary

How we talk about autism

1. Dwyer P. Stigma, Incommensurability, or Both? Pathology-First, Person-First, and Identity-First Language and the Challenges of Discourse in Divided Autism Communities. J Dev Behav Pediatr. 2022 Feb-Mar 01;43(2):111-113. doi: 10.1097/DBP.0000000000001054. PMID: 34984993. https://journals.lww.com/jrnldbp/fulltext/2022/03000/stigma,_incommensurability,_or_both_.7.aspx

Module 1

History of autism research

2. Office of National Autism Coordination, National Institute of Mental Health, National Institutes of Health (on behalf of the Interagency Autism Coordinating Committee). 2019-2020 IACC Autism Research Portfolio Analysis Report. March 2024. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/publications/portfolio-analysis/2020/
3. Milton DE. On the ontological status of autism: the ‘double empathy problem.’ Disability & Society. 2012; 27(6): 883-887.

Autistic perspective on stimming

4. Kapp SK, Steward R, Crane L, et al. 'People should be allowed to do what they like': Autistic adults' views and experiences of stimming. Autism. 2019; 23(7): 1782-1792. doi:10.1177/1362361319829628

Harm and autism research

5. Dawson M, Fletcher-Watson S. When autism researchers disregard harms: A commentary. Autism. 2022; 26(2): 564-566. doi:10.1177/13623613211031403
6. Sandoval-Norton, A. H., & Shkedy, G. (2019). How much compliance is too much compliance: Is long-term ABA therapy abuse? Cogent Psychology, 6(1), 1641258.

Ableism

• Ableism across a lifetime video
• Ableism and Violence: A Plain Language Guide

Module 2

Participatory Research

• Webinar on Conducting Quality Participatory Autism Research
• Participatory Research Methods

Patient-Centered Outcomes Research Institute (PCORI)

• About PCORI
• PCORI’s National Priorities for Health

Other funding sources

• Grants.gov
• Patient Centered Outcomes Research Institute (PCORI)
• National Institute of Health (NIH)
• Department of Defense (DOD)

Funding resources open to community members

• Private foundations and non-for-profit funders

Module 3

Roles on research teams

• PCORI: Roles of Patient and Stakeholder Partners in Patient-Centered Research
• Indeed.com: Key roles and responsibilities of research teams
• Society of Clinical Research Associates (SOCRA): Team science principles

Module 4

Autism and self-advocacy organizations

• Academic Autism Spectrum Partnership in Research and Education (AASPIRE)
• Autistic Self-Advocacy Network (ASAN)
• Association of University Centers on Disability (AUCD)

Finding research articles

• PubMed PICO tool
• How to find research articles in PubMed
• PubMed
• Google Scholar

Research methods

• PCORI: Research Fundamentals

Accessible ethics training

• RE4ALL

Inclusive Team practices

• PCORI: Building Effective Multi-Stakeholder Research Teams
• PCORI: Leading and Contributing to Team Decisions
• PCORI: Valuing All Voices Checklist