Guidelines for the Creation of Accessible Consent Materials and Procedures: Lessons from Research with Autistic People and People with Intellectual Disability

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Kirby, A. V., MacKenziem, K. T., Kirby, A. V., McDonald, K., Moura, I., Breitenfeldt, K., Rutenberg, E., Kumar, T., Mancino, J., Sabatello, M., Roth, S., Nicolaidis, C., & the Working to increase Inclusivity in Research Ethics (WIRE) Consortium (2025). Guidelines for the Creation of Accessible Consent Materials and Procedures: Lessons from Research with Autistic People and People with Intellectual Disability. Autism in Adulthood. https://doi.org/10.1089/aut.2024.0263

Publication date: 19 Feb 2025 Added to AutiHub: 22 Aug 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

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Authors

Publication authors
13
Publication authors identified as autistic
1 / 13 (7.7%)
  1. Anne V. Kirby
  2. Kristen T. MacKenziem
  3. Anne V. Kirby
  4. Katherine McDonald
  5. Ian Moura *
  1. Kaitlyn Breitenfeldt
  2. Elizabeth Rutenberg
  3. Tanvi Kumar
  4. Juliet Mancino
  5. Maya Sabatello
  1. Shannon Roth
  2. Christina Nicolaidis
  3. the Working to increase Inclusivity in Research Ethics (WIRE) Consortium

Abstract

Informed, voluntary, ongoing consent is a central tenet of ethical research. However, consent processes are prone to exclusionary practices and inaccessibility. Consent materials are often too long and complex to foster understanding and ensure that people make truly informed decisions to participate in research. While this complexity is problematic for all people, these challenges are compounded for autistic people and people with intellectual disability. Consent materials and procedures rarely incorporate accommodations for processing and communication differences common in autism and intellectual disability. Failure to provide such accommodations ultimately threatens the conduct of ethical research. We describe lessons learned across multiple major U.S. research institutions that improved informed consent materials and procedures, with the goal of fostering responsible inclusion in research for autistic people and people with intellectual disability. We used these alternative materials and procedures in multiple research projects with samples of autistic people and people with intellectual disability. Each contributing team partnered with university human research participant protections personnel, accessibility experts, community members, and researchers to develop rigorous procedures for improving the readability and accessibility of informed consent materials. We present guidelines for designing consent materials and procedures and assert that participatory methods are vital to the success of ongoing accessibility initiatives. Adoption of understandable consent materials and accessible consent procedures can cultivate more equitable, respectful, and inclusive human research practices. Future work should expand on this work to design inclusive practices for populations with additional considerations.

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: 12 Sep 2026 18:15.

Cited references
39
With a DOI
25
Without a DOI, from raw bibliography text
14
9 / 39 (23.1%) cited references include at least one author identified as autistic.
References with data to complete
11 / 39 (28.2%)
References with detected author names
28 / 39 (71.8%)
Without detected author names
11
Without a structured title
11
Without a stable identifier
14
References with raw author names still to review
0
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
120
From DOI or external metadata
120
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
11
42 / 120 (35.0%) names are linked to an author already present in AutiHub. 78 / 120 (65.0%) names are not yet linked.
Names linked to a person identified as autistic
16 / 120 (13.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 16 / 42 (38.1%). Distinct people identified as autistic: 13 / 108 (12.0%).
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