“I’m Excited to Have my Voice Heard”: Understanding Autism Research Participation From the Perspective of Autistic Women, Non-Binary Adults, and Parents of Autistic Girls

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Putnam, O., Eddy, G., Crowley LaPoint, S., Swisher, M., & Harrop, C. (2025). “I’m Excited to Have my Voice Heard”: Understanding Autism Research Participation From the Perspective of Autistic Women, Non-Binary Adults, and Parents of Autistic Girls. Neurodiversity, 3. https://doi.org/10.1177/27546330251324007

Publication date: 24 Apr 2025 Added to AutiHub: 27 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
5
Publication authors identified as autistic
1 / 5 (20.0%)
  1. Orla Putnam *
  2. Genessa Eddy
  3. Shannon Crowley LaPoint
  4. Madison Swisher
  5. Clare Harrop

Abstract

The purpose of this qualitative study is to better understand how underrepresented gender groups within the autism community engage with autism research as participants. Using reflexive thematic analysis of semi-structured interviews with autistic women, autistic non-binary adults, and parents of autistic girls/women (N = 41), we identified themes that encompass motivations to participate in research, barriers to participation, and elements of a research study that facilitate or hinder the research experience. Some themes overlapped with previous research with different groups of community members. However, other themes surrounding representation in autism research and the importance of community in facilitating research participation were novel and particularly salient among members of these underrepresented gender groups. This study builds upon previous research aimed at understanding gender-specific research priorities to extend the field's understanding of research participation for these historically underrepresented groups. Themes from the current study can therefore improve the facilitation of future research partnerships with members of this community to achieve shared research goals moving forward.

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: 2 Oct 2026 11:55.

Cited references
62
With a DOI
58
Without a DOI, from raw bibliography text
4
16 / 62 (25.8%) cited references include at least one author identified as autistic.
References with data to complete
1 / 62 (1.6%)
References with detected author names
61 / 62 (98.4%)
Without detected author names
1
Without a structured title
1
Without a stable identifier
4
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
339
From DOI or external metadata
339
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
1
172 / 339 (50.7%) names are linked to an author already present in AutiHub. 167 / 339 (49.3%) names are not yet linked.
Names linked to a person identified as autistic
37 / 339 (10.9%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 37 / 172 (21.5%). Distinct people identified as autistic: 31 / 305 (10.2%).
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