Recommended Resources

These resources offer robust information about conducting community-engaged research, touching on topics at all stages of the process. Some resources included below are not specifically about autism research, but provide important insight regardless.

Autism-Specific Resources

Participatory and Inclusive Autism Research Practice Guides

• This resource provides information about conducting participatory research with autistic people, and also provides information about including autistic people as participants in a research study.

Autistic Adults and other Stakeholders Engage Together Engagement & Compensation Guide

• This resource provides information about a variety of topics related to engaging with autistic people in research including: Presuming competence, compensation, communication strategies, and measuring engagement.

AASPIRE Inclusion Toolkit–Participatory Research

• This resource includes video presentations, written materials, and resources about conducting autism research in partnership with autistic people, with an emphasis on the community-based participatory research framework on CEnR.

A Workbook to Support Community- Engaged Autism Research: Lessons from Project STEER

• This workbook contains guidance and activities to support researchers as they plan and conduct community-engaged research.

Starter Pack: Participatory Autism Research

• This resource provides helpful information to start on the journey of community-engaged autism research.

General Community-Engagement Resources

Principles of Community Engagement: Second Edition

• This resource provides robust information about community engagement, and was created by a task force across the Center for Disease Control and Prevention (CDC), National Institutes for Health (NIH), and other federal agencies in the United States.

Building Effective Multi-Stakeholder Research Teams

• This section of PCORI’s website includes robust guidelines and resources about conducting effective and inclusive community-engaged research.

A Guide to Selecting Participatory Research Methods Based on Project and Partnership Goals

• This article describes a wide variety of community-engagement strategies that researchers may use at various stages of the research process.

Stakeholder Engagement Navigator

• This website helps researchers choose engagement strategies based on factors such as their purpose, budget, timeframe, and level of expertise.

Botha M, Cage E. “Autism research is in crisis”: A mixed method study of researcher’s constructions of autistic people and autism research. Frontiers in Psychology. 2022;13. doi:10.3389/fpsyg.2022.1050897

Bottema-Beutel K, Kapp SK, Sasson N, Gernsbacher MA, Natri H, Botha M. Anti-ableism and scientific accuracy in autism research: a false dichotomy. Front Psychiatry. 2023;14. doi:10.3389/fpsyt.2023.1244451

Bottema-Beutel K, Kapp SK, Lester JN, Sasson NJ, Hand BN. Avoiding Ableist Language: Suggestions for Autism Researchers. Autism in Adulthood. Published online September 2, 2020. doi:10.1089/aut.2020.0014

Dwyer P. The Neurodiversity Approach(es): What Are They and What Do They Mean for Researchers? Hum Dev. 2022;66(2):73-92. doi:10.1159/000523723

For Whose Benefit?: Evidence, Ethics, and Effectiveness of Autism Interventions – Autistic Self Advocacy Network. https://autisticadvocacy.org/. December 6, 2021. Accessed April 3, 2024. https://autisticadvocacy.org/policy/briefs/intervention-ethics/

Kapp SK, ed. Autistic Community and the Neurodiversity Movement: Stories from the Frontline. Springer; 2020. doi:10.1007/978-981-13-8437-0

Leadbitter K, Buckle KL, Ellis C, Dekker M. Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice. Frontiers in Psychology. 2021;12. Accessed November 8, 2022. https://www.frontiersin.org/articles/10.3389/fpsyg.2021.635690

Pellicano E, den Houting J. Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science. Journal of Child Psychology and Psychiatry. 2022;63(4):381-396. doi:10.1111/jcpp.13534

Pickard H, Pellicano E, den Houting J, Crane L. Participatory autism research: Early career and established researchers’ views and experiences. Autism. 2022;26(1):75-87. doi:10.1177/13623613211019594

Tan DW. Early-Career Autism Researchers Are Shifting Their Research Directions: Tragedy or Opportunity? Autism in Adulthood. 2023;5(3):218-224. doi:10.1089/aut.2023.0021

Walker N. Neurodiversity: Some Basic Terms and Definitions. August 1, 2021. Accessed August 24, 2024. https://neuroqueer.com/neurodiversity-terms-and-definitions/

Greenfield PM. Studying social change, culture, and human development: A theoretical framework and methodological guidelines. Developmental Review. 2018;50:16-30. doi:10.1016/j.dr.2018.05.003

Maye M, Boyd BA, Martínez-Pedraza F, Halladay A, Thurm A, Mandell DS. Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities. J Autism Dev Disord. 2022;52(9):4206-4211. doi:10.1007/s10803-021-05250-y

Norbury CF, Sparks A. Difference or disorder? Cultural issues in understanding neurodevelopmental disorders. Dev Psychol. 2013;49(1):45-58. doi:10.1037/a0027446

Soto-Boykin XT, Larson AL, Olszewski A, Velury V, Feldberg A. Who Is Centered? A Systematic Review of Early Childhood Researchers’ Descriptions of Children and Caregivers From Linguistically Minoritized Communities. Topics in Early Childhood Special Education. 2021;41(1):18-30. doi:10.1177/0271121421991222

Williams EDG, Smith MJ, Boyd B. Perspective: The role of diversity advisory boards in autism research. Autism. 2023;27(3):864-869. doi:10.1177/13623613221133633

Bronfenbrenner U, Morris PA. The Bioecological Model of Human Development. In: Handbook of Child Psychology. American Cancer Society; 2007. doi:10.1002/9780470147658.chpsy0114

García Coll C, Lamberty G, Jenkins R, et al. An integrative model for the study of developmental competencies in minority children. Child Dev. 1996;67(5):1891-1914.

Why Am I Always Being Researched? Chicago Beyond. https://wp.chicagobeyond.org/insights/philanthropy/why-am-i-always-being-researched/

Cyril S, Smith BJ, Possamai-Inesedy A, Renzaho AMN. Exploring the role of community engagement in improving the health of disadvantaged populations: a systematic review. Glob Health Action. 2015;8:29842. doi:10.3402/gha.v8.29842

Mathie A, Cunningham G. From clients to citizens: Asset-based Community Development as a strategy for community-driven development. Development in Practice. 2003;13(5):474-486. doi:10.1080/0961452032000125857

Nzinga K, Rapp DN, Leatherwood C, et al. Should social scientists be distanced from or engaged with the people they study? Proceedings of the National Academy of Sciences. 2018;115(45):11435-11441. doi:10.1073/pnas.1721167115

Odedina FT, Wieland ML, Barbel-Johnson K, Crook JM. Community Engagement Strategies for Underrepresented Racial and Ethnic Populations. Mayo Clin Proc. 2024;99(1):159-171. doi:10.1016/j.mayocp.2023.07.015

Ramanadhan S, Alemán R, Bradley CD, et al. Using Participatory Implementation Science to Advance Health Equity. Annu Rev Public Health. 2024;45(1):47-67. doi:10.1146/annurevpublhealth- 060722-024251

Rogers, L. O., Moffitt, U., McLean, K. C., & Syed, M. (2024). Research as resistance: Naming and dismantling the master narrative of “good” science. American Psychologist, 79(4), 484–496. https://doi.org/10.1037/amp0001246