The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants

Christina Nicolaidis, Dora Raymaker, Steven K. Kapp, Amelia Baggs, E. Ashkenazy, Katherine E McDonald, Michael Weiner, Joelle Maslak, Morrigan Hunter, Andrea Joyce

Research output: Contribution to journalArticle

2 Citations (Scopus)

Abstract

As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006–2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research.

Original languageEnglish (US)
JournalAutism
DOIs
StatePublished - Jan 1 2019

Fingerprint

Practice Guidelines
Research Personnel
Research
Guidelines
Cultural Anthropology
Proxy
Autistic Disorder
Artifacts
Communication
Interviews

Keywords

  • adults
  • autism
  • participatory research
  • qualitative research
  • research ethics
  • survey adaptation

ASJC Scopus subject areas

  • Developmental and Educational Psychology

Cite this

The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. / Nicolaidis, Christina; Raymaker, Dora; Kapp, Steven K.; Baggs, Amelia; Ashkenazy, E.; McDonald, Katherine E; Weiner, Michael; Maslak, Joelle; Hunter, Morrigan; Joyce, Andrea.

In: Autism, 01.01.2019.

Research output: Contribution to journalArticle

Nicolaidis, Christina ; Raymaker, Dora ; Kapp, Steven K. ; Baggs, Amelia ; Ashkenazy, E. ; McDonald, Katherine E ; Weiner, Michael ; Maslak, Joelle ; Hunter, Morrigan ; Joyce, Andrea. / The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. In: Autism. 2019.
@article{a2d1ea0a11204f3eb00cfd60e563e431,
title = "The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants",
abstract = "As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006–2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research.",
keywords = "adults, autism, participatory research, qualitative research, research ethics, survey adaptation",
author = "Christina Nicolaidis and Dora Raymaker and Kapp, {Steven K.} and Amelia Baggs and E. Ashkenazy and McDonald, {Katherine E} and Michael Weiner and Joelle Maslak and Morrigan Hunter and Andrea Joyce",
year = "2019",
month = "1",
day = "1",
doi = "10.1177/1362361319830523",
language = "English (US)",
journal = "Autism",
issn = "1362-3613",
publisher = "SAGE Publications Ltd",

}

TY - JOUR

T1 - The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants

AU - Nicolaidis, Christina

AU - Raymaker, Dora

AU - Kapp, Steven K.

AU - Baggs, Amelia

AU - Ashkenazy, E.

AU - McDonald, Katherine E

AU - Weiner, Michael

AU - Maslak, Joelle

AU - Hunter, Morrigan

AU - Joyce, Andrea

PY - 2019/1/1

Y1 - 2019/1/1

N2 - As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006–2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research.

AB - As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006–2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research.

KW - adults

KW - autism

KW - participatory research

KW - qualitative research

KW - research ethics

KW - survey adaptation

UR - http://www.scopus.com/inward/record.url?scp=85063964429&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85063964429&partnerID=8YFLogxK

U2 - 10.1177/1362361319830523

DO - 10.1177/1362361319830523

M3 - Article

JO - Autism

JF - Autism

SN - 1362-3613

ER -