Advancing Inclusive Research in Intellectual and Developmental Disabilities: Building Community and Supports for Participation

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

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref PubMed BibTeX OpenCitations
Learn more about the sources used

Shogren, K. A., Linnenkamp, B., Townsend, R., Edwards, B., Rentschler, L., Taconet, A., Stelter, C., Henley, R., Bright, K., Hildebrandt, L., Dean, E., Loyless, R., & Swindler, S. (2025). Advancing Inclusive Research in Intellectual and Developmental Disabilities: Building Community and Supports for Participation. Intellectual and Developmental Disabilities, 63(6), 457-471. https://doi.org/10.1352/1934-9556-63.6.457

Publication date: 24 Nov 2025 Added to AutiHub: 21 Oct 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
13
Publication authors identified as autistic
2 / 13 (15.4%)
  1. Karrie A. Shogren
  2. Brad Linnenkamp
  3. Rebecca Townsend
  4. Ben Edwards *
  5. Lindsay Rentschler
  1. Ashley Taconet
  2. Claire Stelter *
  3. Ryan Henley
  4. Kaela Bright
  5. Lisa Hildebrandt
  1. Evan Dean
  2. Roxanne Loyless
  3. Sean Swindler

Abstract

People with intellectual and developmental disabilities are often excluded from equitable inclusion in the development and execution of research. Despite increased advocacy for inclusive research over the last decade, the widespread use of such practices remains limited. There is a need for systemic change to foster the inclusion of people with intellectual and developmental disabilities in planning, conducting, and disseminating research. This paper describes actions taken by a research group to make system changes to empower and support people with intellectual and developmental disabilities to learn about and engage in research. It highlights ongoing work that is needed and possible ways to advance systemic change.

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: 23 Oct 2026 07:46.

Cited references
35
With a DOI
29
Without a DOI, from raw bibliography text
6
2 / 35 (5.7%) cited references include at least one author identified as autistic.
References with data to complete
3 / 35 (8.6%)
References with detected author names
32 / 35 (91.4%)
Without detected author names
3
Without a structured title
3
Without a stable identifier
6
References with raw author names still to review
3
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
118
From DOI or external metadata
118
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
4
30 / 118 (25.4%) names are linked to an author already present in AutiHub. 88 / 118 (74.6%) names are not yet linked.
Names linked to a person identified as autistic
13 / 118 (11.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 13 / 30 (43.3%). Distinct people identified as autistic: 10 / 102 (9.8%).
  1. Erin Stack , Katherine McDonald (2014). Nothing About Us Without Us: Does Action Research in Developmental Disabilities Research Measure Up? Journal of Policy and Practice in Intellectual Disabilities, 11(2), 83-91. Wiley.
    Type: Article DOI: 10.1111/jppi.12074 OpenAlex: https://openalex.org/W1558824088
    Crossref OpenAlex OpenCitations
  2. Askia Adams (2024). Advocacy and Research Coming Together . Inclusion, 12(1), 11-12. Informa UK Limited.
    Type: Article DOI: 10.1352/2326-6988-12.1.11 OpenAlex: https://openalex.org/W4392050677
    Crossref OpenAlex OpenCitations
  3. Christine Bigby , Patsie Frawley , Paul Ramcharan (2014). Conceptualizing Inclusive Research with People with Intellectual Disability . Journal of Applied Research in Intellectual Disabilities, 27(1), 3-12. Wiley.
    Type: Article DOI: 10.1111/jar.12083 OpenAlex: https://openalex.org/W2015233049
    Crossref OpenAlex OpenCitations
  4. Ausderau K. K. & Health Research Engagement Development Team. (n.d.). Research engagement and advocacy for diverse individuals (READI) curriculum. (PCORI Eugene Washington Engagement Award No. 10029).
    Type: Other
    Crossref
  5. Pauline Bosma (2024). Pauline Bosma’s Tips on How to Be a Good Research Ally . Inclusion, 12(1), 8-10. Informa UK Limited.
    Type: Article DOI: 10.1352/2326-6988-12.1.8 OpenAlex: https://openalex.org/W4392050479
    Crossref OpenAlex OpenCitations
  6. Emma L. White , Michelle F. Morgan (2012). Yes! I am a researcher. The research story of a young adult with D own syndrome . British Journal of Learning Disabilities, 40(2), 101-108. Wiley.
    Type: Article DOI: 10.1111/j.1468-3156.2012.00745.x OpenAlex: https://openalex.org/W2044129571
    Crossref OpenAlex OpenCitations
  7. Christine Bigby , Patsie Frawley (2010). Reflections on doing inclusive research in the “Making Life Good in the Community” study . Journal of Intellectual & Developmental Disability, 35(2), 53-61. Informa UK Limited.
    Type: Article DOI: 10.3109/13668251003716425 OpenAlex: https://openalex.org/W2139534627
    Crossref OpenAlex OpenCitations
  8. Drew Milne (2024). My Experience in Information Dissemination . Inclusion, 12(1), 26-29. Informa UK Limited.
    Type: Article DOI: 10.1352/2326-6988-12.1.26 OpenAlex: https://openalex.org/W4392012357
    Crossref OpenAlex OpenCitations
  9. Jessica M. Kramer , John C. Kramer , Edurne García-Iriarte , Joy Hammel (2011). Following Through to the End: The Use of Inclusive Strategies to Analyse and Interpret Data in Participatory Action Research with Individuals with Intellectual Disabilities . Journal of Applied Research in Intellectual Disabilities, 24(3), 263-273. Wiley.
    Type: Article DOI: 10.1111/j.1468-3148.2010.00602.x OpenAlex: https://openalex.org/W2063479481
    Crossref OpenAlex OpenCitations
  11. Jan Walmsley (2004). Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research . Nursing Inquiry, 11(1), 54-64. Wiley.
    Type: Article DOI: 10.1111/j.1440-1800.2004.00197.x OpenAlex: https://openalex.org/W2090766173
    Crossref OpenAlex OpenCitations
  12. David A. Housel (2020). When Co-Occurring Factors Impact Adult Learners: Suggestions for Instruction, Preservice Training, and Professional Development . Adult Learning, 31(1), 6-16. SAGE Publications.
    Type: Article DOI: 10.1177/1045159519849910 OpenAlex: https://openalex.org/W2947340757
    Crossref OpenAlex OpenCitations
  14. Brown J. (2005). The World Cafe: Shaping our futures through conversations that matter . The World Cafe: Shaping our futures through conversations that matter.
    Type: Other
    Crossref
  15. Jan Walmsley , Iva Strnadová , Kelley Johnson (2018). The added value of inclusive research . Journal of Applied Research in Intellectual Disabilities, 31(5), 751-759. Wiley.
    Type: Article DOI: 10.1111/jar.12431 OpenAlex: https://openalex.org/W2774643058
    Crossref OpenAlex OpenCitations
  16. Patricia O'Brien , Roy McConkey , Edurne García‐Iriarte (2014). Co‐researching with People who Have Intellectual Disabilities: Insights From a National Survey . Journal of Applied Research in Intellectual Disabilities, 27(1), 65-75. Wiley.
    Type: Article DOI: 10.1111/jar.12074 OpenAlex: https://openalex.org/W2135458332
    Crossref OpenAlex OpenCitations
  17. Bianka Camacho , Cyril Nonga-Mann , Elijah Thomas , Jessica M. Kramer (2024). Figuring Out an Accessible PEDI-PRO Score Report for Young Adults With Disabilities . Inclusion, 12(1), 20-25. Informa UK Limited.
    Type: Article DOI: 10.1352/2326-6988-12.1.20 OpenAlex: https://openalex.org/W4392077551
    Crossref OpenAlex OpenCitations
  18. CAST. (2018). Universal Design for Learning Guidelines version 2. 2. http://udlguidelines.cast.org
    Type: Other
    Crossref
  19. Iva Strnadová , Therese M. Cumming , Marie Knox , Trevor Parmenter (2014). Building an Inclusive Research Team: The Importance of Team Building and Skills Training . Journal of Applied Research in Intellectual Disabilities, 27(1), 13-22. Wiley.
    Type: Article DOI: 10.1111/jar.12076 OpenAlex: https://openalex.org/W2160689037
    Crossref OpenAlex OpenCitations
  20. Dolmage J. (2017). Academic ableism: Disability and higher education . University of Michigan.
    Type: Other
    Crossref
  21. Marcia Hagen , Sunyoung Park (2016). We knew it all along! Using cognitive science to explain how andragogy works . European Journal of Training and Development, 40(3), 171-190. Emerald.
    Type: Article DOI: 10.1108/ejtd-10-2015-0081 OpenAlex: https://openalex.org/W2287006044
    Crossref OpenAlex OpenCitations
  22. Petri J. C. M. Embregts , Elsbeth F. Taminiau , Luciënne Heerkens , Alice P. Schippers , Geert van Hove (2018). Collaboration in Inclusive Research: Competencies Considered Important for People With and Without Intellectual Disabilities . Journal of Policy and Practice in Intellectual Disabilities, 15(3), 193-201. Wiley.
    Type: Article DOI: 10.1111/jppi.12248 OpenAlex: https://openalex.org/W2766737169
    Crossref OpenAlex OpenCitations
  23. T. K. Frankena , J. Naaldenberg , M. Cardol , E. Garcia Iriarte , T. Buchner , Katie Brooker et al. (2019). A consensus statement on how to conduct inclusive health research . Journal of Intellectual Disability Research, 63(1), 1-11. Wiley.
    Type: Article DOI: 10.1111/jir.12486 OpenAlex: https://openalex.org/W2800864829
    Crossref OpenAlex OpenCitations
  24. Edurne García Iriarte , Gemma Díaz Garolera , Nancy Salmon , Brian Donohoe , Greg Singleton , Laura Murray et al. (2023). How we work: reflecting on ten years of inclusive research . Disability & Society, 38(2), 205-227. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2021.1907546 OpenAlex: https://openalex.org/W3166299955
    Crossref OpenAlex OpenCitations
  25. Malcolm S Knowles , Elwood F Holton III , Richard A Swanson (2005). The Adult Learner . Routledge.
    Type: Book DOI: 10.4324/9780080481913 OpenAlex: https://openalex.org/W4231529853
    Crossref OpenAlex OpenCitations
  26. Brad Linnenkamp (2024). My Experiences as a Researcher . Inclusion, 12(1), 13-16. Informa UK Limited.
    Type: Article DOI: 10.1352/2326-6988-12.1.13 OpenAlex: https://openalex.org/W4392050589
    Crossref OpenAlex OpenCitations
  27. Ariel Schwartz , Jessica M. Kramer , Ellen S. Cohn , Katherine McDonald (2020). “That Felt Like Real Engagement”: Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability . Qualitative Health Research, 30(2), 236-249. SAGE Publications.
    Type: Article DOI: 10.1177/1049732319869620 OpenAlex: https://openalex.org/W2971111448
    Crossref OpenAlex OpenCitations
  28. Vanessa Vega‐Córdova , Izaskun Álvarez‐Aguado , Cristina Jenaro , Herbert Spencer‐González , Mauricio Díaz Araya (2020). Analyzing Roles, Barriers, and Supports of Co‐researchers in Inclusive Research . Journal of Policy and Practice in Intellectual Disabilities, 17(4), 318-331. Wiley.
    Type: Article DOI: 10.1111/jppi.12354 OpenAlex: https://openalex.org/W3044746129
    Crossref OpenAlex OpenCitations
  29. Jessica M. Kramer , Ariel Schwartz , Taye Hallock , Raine Myrvold , I-Ting Hwang , Beth Pfeiffer et al. (2023). Developing and evaluating a toolkit of strategies to support remote inclusive research teams . Journal of Intellectual Disabilities, 27(4), 964-975. SAGE Publications.
    Type: Article DOI: 10.1177/17446295221110390 OpenAlex: https://openalex.org/W4283645118
    Crossref OpenAlex OpenCitations
  30. Katherine McDonald , Ariel Schwartz , Micah Fialka-Feldman (2021). Belonging and Knowledge Production: Fostering Influence Over Science via Participatory Research with People with Developmental Disabilities . In Emerging Issues in Family and Individual Resilience (pp. 97-118). Springer International Publishing.
    Type: Book chapter DOI: 10.1007/978-3-030-81277-5_7
    Crossref
  31. Meg Milligan , Suzanne Tew-Washburn , Kanessa Miller Doss , Joseph P. Giambrone (2019). Addressing Accessibility Issues in Institutional Review Board Policies . Disability Studies Quarterly, 39(1). The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v39i1.6062
    Crossref
  32. Karrie A. Shogren (2023). The Right to Science: Centering People With Intellectual Disability in the Process and Outcomes of Science . Intellectual and Developmental Disabilities, 61(2), 172-177. Informa UK Limited.
    Type: Article DOI: 10.1352/1934-9556-61.2.172 OpenAlex: https://openalex.org/W4361268758
    Crossref OpenAlex OpenCitations
  33. Jacob Myers , Ariel Schwartz (2024). My Experiences Making Decisions and Working Together in Research . Inclusion, 12(1), 17-19. Informa UK Limited.
    Type: Article DOI: 10.1352/2326-6988-12.1.17 OpenAlex: https://openalex.org/W4392080978
    Crossref OpenAlex OpenCitations
  34. Nilson L. B. (2016). Teaching at its best: A research-based resource for college instructors . Teaching at its best: A research-based resource for college instructors.
    Type: Other
    Crossref
  35. Plain Writing Act of 2010 Pub. L. No. 111-274 124 Stat. 2861 (2010).
    Type: Other
    Crossref