Exploring Views on Future Directions of Research Involving Nonbinary Autistic People Through Lived Experience

Abstract

Background
The research process usually starts with a problem, issue or idea. Autistic and disabled activists that they should be the leading authorities on issues that affect them - ‘Nothing about us, without us’ (Charlton, 1998). Participatory autism research should, therefore, involve stakeholders in decisions on research agendas and directions (Pellicano et al., 2014). Autistic people are 5 to 7 times more likely to be transgender or nonbinary (Warrier et al., 2020). An INSAR special interest group convened at the annual meeting in 2018 highlighted the need for further research into LGBTQ populations (Dewinter et al., 2020). However, to date no research has looked at what genderdiverse autistic people think about research that involves them or what future research should focus on.
Objectives
This project sought to capture what nonbinary autistic people think about research that involves them and how this relates to their experiences. This included looking at their views on current research, what future research should focus on and how these views are informed by their experiences. A phenomenological lens was chosen to provide novel insights into how views on research draw on individuals’ experiences in their own lives.
Methods
Nonbinary autistic participants were contacted directly on social media with a focus on selecting individuals from a range of backgrounds. The project utilised interviews alongside creative and participatory methods where participants were asked to come up with their own research questions by drawing on themes from their own lives. Interview data was analysed using interpretative phenomenological analysis (Smith et al., 2022), which allowed connections to be made between individuals’ views and experiences.
Results
Participants valued current research that included participants and experiences from a diverse range of backgrounds. They also prioritised current research that was relevant to the immediate needs of the community. Participants thought future research should be community-led and had ideas about the role of education in facilitating social change and meeting the needs of nonbinary autistic people. Participants’ views were informed by foundational experiences growing up, conflict throughout their lives and newfound self-discovery and empowerment in their present day as well as interactions with others in their communities.
Conclusions
Exploring the views and experiences of genderdiverse autistic people sheds light on insights that can be gained by considering those with multiple maginalised identities. Findings have implications for future research. These include considering how research can reflect the diversity of experiences and identities within the autistic community and how participatory methods can be employed across a broader range of areas of autism research, a message which has been echoed by both autism researchers and advocates (Pellicano, 2020).

Full text

Exploring Views on Future Directions of Research Involving
Nonbinary Autistic People Through Lived Experience
Charlotte Brooks
Autism Centre for Education and Research, University of Birmingham, CXB1058@student.bham.ac.uk
Background
Autistic people are 5 to 7 times more likely to be transgender or
nonbinary (Warrier et al., 2020). An INSAR special interest group in
2018 highlighted the need for further research into LGBTQ populations
(Dewinter et al., 2020). However, research has only begun to look at
what genderdiverse autistic people think about research that involves
them or what future research should focus on (Munday, 2022).
Objectives
What do nonbinary autistic people think about research that
involves them and how this relates to their experiences?
This included looking at their views on current research, what future
research should focus on and how these views are informed by their
experiences through a phenomenological lens.
Methods
Participants Nonbinary autistic individuals were contacted directly on
social media with a focus on selecting those from a range of
backgrounds. Five nonbinary adults participated.
Data collection Interviews were utilised alongside creative participatory
methods where participants were asked to come up with their own
research questions by drawing on their own lives. They also ranked
statements based on objectives of past research in order of importance
as part of the interview.
Analysis Interview data was analysed using interpretative
phenomenological analysis (Smith et al., 2022), allowing connections
to be made between views and experiences.
Findings
Current research The table shows the spread of where participants ranked the priorities of research done so far involving
nonbinary autistic people as participants. Participants had varied views on the importance of different areas of research
according to the ranking statements task. In areas they converged, they valued:
•research that included a diverse range of
participants and experiences
•research relevant to the immediate needs
of the community (such as access to
services and mental health)
Research on the statistical relationship
between being autistic and gender diversity
was considered less important.
Future research Participants thought future research should be
community-led and had ideas about the role of education in facilitating
social change and meeting the needs of the community
Informed by experience Participants’ views were informed by
foundational experiences growing up, conflict throughout their lives and
newfound self-discovery and empowerment in their present day as well as
interactions with others in their communities.
Conclusions
The following recommendations for future research emerged from the findings:
•Research agendas should be broad and reflect the needs of marginalised groups within
the autistic community
•Researchers should consider how binary concepts of gender are reinforced throughout
the research process
•Research should be community led and participatory, including diverse voices in key
decision-making processes
•Research energy should focus on ways forward instead of reconfirming negative
experiences
References
Dewinter, J., van der Miesen, A.I.R. and Holmes, L.G. (2020) ‘INSAR Special
Interest Group report: Stakeholder perspectives on priorities for future
research on autism, sexuality, and intimate relationships’, Autism Research,
13(8), pp. 1248–1257. Available at: https://doi.org/10.1002/aur.2340.
Munday, K. (2022) Stories from across the “double rainbow”: Transgender
and non-binary Autistic narratives. Master’s Dissertation. University of
Portsmouth. Available at: https://doi.org/10.13140/RG.2.2.34886.75843
Smith, J., Flowers, P. and Larkin, M. (2022) Interpretative phenomenological
analysis: theory, method and research. 2nd edn. London: SAGE Publications.
Warrier, V. et al. (2020) ‘Elevated rates of autism, other neurodevelopmental and
psychiatric diagnoses, and autistic traits in transgender and gender-diverse
individuals’, Nature Communications, 11(1), p. 3959. Available at:
https://doi.org/10.1038/s41467-020-17794-1.
Interview
format
Physical
disabilities
Other neuro-
divergences
Diagnostic status
(age at diagnosis)
NationalityEthnicityAgeGenderParticipant
Online
video
Wears
glasses,
asthmatic
ADHDFormally
identified (29),
OCD
BritishWhite British32Trans masculine
non-binary
Kay
Online
written
YesADHDFormally
identified (41)
North AmericanWhite44Non binary,
transgender
Rae
Online
audio
Chronic painADHDFormally
identified (30)
SingaporeanChinese
(Hokkien)
31Non-binarySam
Online
video
YesADHD,
synesthetic,
dyspraxia,
hyperlexia
Formally
identified (16)
North AmericanNative
American,
white, Latinx
29TwoSpirit, non-
binary,
Autigender,
Indigenous
woman, gender
fluid
Tas
Online
video
Yesauditory
processing
disorder,
probably
dyslexic
Self-identifiedNorth AmericanWhite31DemigirlLauren
Where are the nonbinary folk? Like, where
are the agender folk? Where are the
genderf*** folk? Where are the
gendervagues? - Kay
I... am like this for a reason, it's a gift(…)it doesn't
make you infallible, it just means that, like, you've
been trusted- Tas
you let people ask their questions, and you answer
them…it’s meeting people where they're at. And...
and listening(…)like not gatekeep knowledge -
Lauren
Researcher
profile