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Exploring views on future directions of research involving nonbinary autistic people
through lived experience
Charlotte Brooks
University of Birmingham
Master’s Dissertation
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Acknowledgements
I would like to acknowledge all the people who have supported me during this course and
this project. Family and friends have helped me to stay motivated by always being curious
about what I have been doing, even when I, myself, felt lost. My supervisors, Prithvi and
Karen, have been a constant presence that I knew I could turn to with any queries and have
frequently supported me to consider new ideas and perspectives. I’m deeply thankful to the
people who participated in this project. They opened their lives and experiences to me, a
gesture which cannot go unacknowledged. I hope this project honours their contributions.
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Abstract
This study aimed to capture what nonbinary autistic people think about research that involves
them and how this relates to their experiences. Research questions considered views of
current research, what future research should focus on and how views are informed by
experiences. Interpretative phenomenological analysis (IPA) was used to analyse transcripts
from interviews with 5 NBA individuals through an intersectional lens. Participants valued
current research that was important and timely to NBA individuals from diverse backgrounds
and focused on ways forward. They thought future research should be led by the community
and had ideas about the role of education in facilitating societal change and meeting the needs
of NBA people. Views were informed by foundational experiences growing up, conflict
throughout their lives and newfound self-discovery and empowerment in their present day.
Participants were informed by others’ experiences and took an active role in shaping their
communities. Further research may utilise the findings of this paper to inform research
agendas, community-led research practices and educational programmes for teaching about
diversity.
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Exploring views on future directions of research involving nonbinary autistic people
through lived experience
Autism is often viewed as an impairment relating to social, cognitive and perceptual
deficits. However, the neurodiversity paradigm views autism as a neurodevelopmental
difference characterised by differences in sensory experiences, communication, thinking,
socializing and moving (Autistic Self Advocacy Network, 2020). In this paradigm a diversity
of minds are considered as natural and valuable as other forms of human diversity (Walker,
2021). Historically, non-autistic professionals have been considered experts on autistic
people. Non-autistic researchers have, therefore, led the dialogue of what autism is and what
autism research should address (Catala, Faucher and Poirier, 2021). Members of the disability
rights movement have highlighted this issue and argued disabled people should be authorities
on issues that affect them – ‘nothing about us, without us’ (Charlton, 1998). This has
implications for research and indicates autistic people should be involved at all stages in
autism research.
The research process usually starts with a problem, issue or idea that guides a project.
The autistic community should, therefore, be included in decisions on what autism research
should focus upon, especially as studies have shown autistic adults may have different views
on what issues are important compared to other stakeholder groups (Pellicano, Dinsmore and
Charman, 2014; Fletcher-Watson et al., 2019). Past research has looked at the attitudes of
autistic people to current research and has sought their views on what research priorities
should be. These studies have looked at: autism research in general (Pellicano, Dinsmore and
Charman, 2014); early autism research (Fletcher-Watson et al., 2017); sexuality and intimate
relationships (Dewinter, Miesen and Holmes, 2020), transition and employment (Nicholas et
al., 2017; Shattuck et al., 2018); and mental health (Vasa et al., 2018; Benevides et al.,
2020).
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Many autistic people also identify with having a non-binary gender - 16-17%
(Cooper, Smith and Russell, 2018; Sullivan et al., 2021) compared with 2.2% in general
populations (Cooper, Smith and Russell, 2018). This means they identify outside, between or
across the male-female gender binary. Some non-binary people also identify as being
transgender, which refers to people who identify with a gender other than the one they were
assigned at birth. Thus far, the views of the nonbinary autistic (NBA) population have largely
been overlooked, with most studies, including those listed above, involving only male and
female participants. Although non-binary identities have existed across the world throughout
human existence (Herdt, 1996), to date there have been very few studies involving NBA
people, and even fewer focusing on their unique viewpoints. As such, no studies have looked
at the views of NBA people on research that involves them and what they believe should be
priorities of research. However, research has identified the need for more research about how
intersecting identities are experienced by LGBTQ autistic people more generally (Dewinter,
Miesen and Holmes, 2020). Considering intersectional perspectives is important as NBA
people may have different research priorities due to having experiences that are not felt by
those who are not both nonbinary and autistic. When the priorities of affected communities
are not considered, this may have ethical implications: funding may be directed towards
projects that are not relevant or useful for the community; studies may inauthentically
represent peoples’ lives and experiences by not grasping the extent of issues that affect them;
and research may further contribute to damaging narratives, such as those that view autism
from a purely deficit-based model (Kapp et al., 2013).
The Current Project
The current project seeks to address this gap by considering the following research
questions:
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RQ1 - What are NBA individuals’ views on current research that involves
them?
RQ2 - What do NBA individuals think future research involving NBA people
should focus on?
RQ3 - How do views on current and future research relate to the lived
experiences of NBA individuals?
After a review of the literature on research involving NBA people, the methods
employed to address the questions will be outlined.
Literature Review
The literature discussed in this review has been sourced from a systematic review that
will contribute to my doctoral thesis. For the review, I followed PRISMA guidelines (Page et
al., 2021), but the details of this process will not be reported here in full for the sake of
brevity. This narrative review gives an overview, outlining what the literature says about the
lives and experiences of NBA people. I reflect on the following research areas: the role of
identity, including experiences of having multiple identities; autism acceptance, including
relationship experiences, stimming and autistic masking; and experiences accessing
healthcare and education services.
A number of studies identified by the systematic review were less helpful in
contributing to our knowledge of this population. This is largely because it was not the
purpose of these studies to focus on the experiences of NBA people and there were aspects of
the research designs that made it not possible to glean insights on this population (see
Appendix A for details). In the case of quantitative studies, some did not conduct analyses
comparing genders, some combined nonbinary groups with other genders, and some excluded
nonbinary groups from statistical analysis. For qualitative studies, this was mainly due to
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gender labels not being included alongside data excerpts, making it not possible to identify
the contributions of nonbinary participants. This highlights the need for more research
focusing on the specific experiences of NBA people, developing ways to recruit
representative numbers of NBA people in studies and reporting contextual information
alongside qualitative excerpts. Interestingly, a greater number of studies collecting qualitative
or mixed data compared with quantitative studies were more helpful at contributing to
knowledge of NBA people. This was likely due to the tendency for studies collecting
quantitative data to recruit few nonbinary participants and require larger numbers to conduct
group analyses. As such, though the systematic search identified similar numbers of
qualitative and quantitative studies, a greater number of qualitative and mixed studies are
explored below.
Identity
Studies on identity have been largely qualitative, including rich extracts from NBA
participants. Research has remarked on experiences of gender, sexuality, being autistic and
intersections of these identities. In terms of gender, studies have referred to experiences of
participants questioning their gender identity, gender dysphoria, and experiences of gender as
fluid and/or changeable. Cooper et al. (2021) specifically aimed to understand the gender
dysphoria experiences of genderdiverse autistic adults. Although gender dysphoria has
historically been associated with binary transgender people, this experience of unease with
one’s body can also be experienced by nonbinary people (Galupo, Pulice-Farrow and Pehl,
2021). Participants in Cooper et al.’s study described physical characteristics that help to
affirm their gender, such as broad shoulders, a frustration their body cannot transform back to
how it was before puberty, and struggles with having a body that can ‘never be exactly in
between’ (p. 7). In terms of fluidity, Cain and Velasco (2021) explored the life of a person
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who has identified as a cisgender female, as a transgender man and as a transmasculine non-
binary person over the course of their life. The participant, Gray, wanted readers of the study
to understand how gender identity is fluid and can change. This is also referenced in the
studies by Strang et al. (2018, 2021) where genderdiverse autistic adolescents changed their
gender identity over the course of the longitudinal studies. The above studies begin to
highlight the complexities of gender experiences. Participants in the literature also seemed to
suggest their sense of gender identity was made more complex by also being autistic.
Some suggested understanding and conceptualising their gender was made harder by
being autistic (Cain and Velasco, 2021; Cooper et al., 2021). A participant in the study by
Cooper et al. (2021) related this to their own social difficulties and how gender ‘was in the
rulebook you do not get’ (p. 7). In contrast, a participant in another study (Hillier et al., 2020)
remarked they didn’t think being autistic had affected their understanding of their gender
identity – instead they believed being autistic had affected the very nature of their being
nonbinary, and related this to a feeling of being disconnected from their body. They then
went on to say that having the right language and terminology to talk about their experiences
has helped them in their understanding, which was a sentiment also expressed by another in
the same study. Similarly, the participant in Cain and Velasco’s (2021) study felt it was
important for people to understand the options out there to help them to understand their own
experiences. In the literature, this was related to a sense of acceptance about participants’
own identities, which was influenced by their experiences with others and in their
communities. In addition to identity experiences relating to gender and being autistic,
participants also spoke about their sexualities (Hillier et al., 2020; Cain and Velasco, 2021)
and their physical (Cain and Velasco, 2021) and mental health (Miller, Rees and Pearson,
2021). This highlights that, although the focus in this review is on NBA experiences,
individuals’ lives are more complex than this single intersection, and there are many aspects
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that influence their identities.
Autism Acceptance
This section includes studies focusing on individuals’ relationships and community;
their experience of prejudice; the acceptance of autistic characteristics, such as stimming; and
autistic masking.
Relationships
In terms of friendships and relationships, participants in the literature talked about
struggling to make friends, miscommunication in relationships, difficulty negotiating
different aspects of their lives (e.g. friends vs family), and masking as both a barrier and
facilitator to friendship.
In Cain and Valasco’s (2021) study, their participant spoke about their difficulties
making friends and their discontent with being asked to share friends with their brother. They
also talked about their experience joining communities who later had a negative impact on
their life and experience of their gender. In terms of masking in friendships, a participant in
one study wished they’d known how to use ‘social coping strategies’ sooner so they would
have been more accepted by their peers (Hull et al., 2017), whereas a participant in another
study (Cook et al., 2021) talked about how masking acted as a barrier to authenticity in their
relationships with others.
These experiences with friendships and relationships were similar to autistic
participants of other genders, which was reflected in the responses of male and female
participants in the same studies. However, NBA participants also spoke about some
experiences specific to being nonbinary and autistic. For example, they emphasised both the
importance of finding a community of similar, accepting others (Hillier et al., 2020; Cook et
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al., 2021), and the additional difficulties of finding people who accept different parts of you.
As one participant said, in Hillier et al.’s study ‘if you have multiple identities, then it’s very
difficult to find people who understand and accept you’ (p. 103). There was also some
suggestion in a study looking at the social networks of autistic adults that nonbinary
participants had more friends and fewer family members in their social circles, including one
participant who had no family members in their sociogram (McGhee Hassrick et al., 2020).
These findings highlight the importance of providing opportunities for individuals to connect
with each other and recognising where they may have less support from family or friends.
Prejudice
A number of participants in the literature discussed facing prejudice for being autistic
and nonbinary. One individual spoke of how others have preconceived notions of autistic
people and how they were not treated as an individual if they disclosed their autism diagnosis
(Frost, Bailey and Ingersoll, 2019). Another participant spoke about how others in their life
denied aspects of their identity, such as being told by an ex-partner they were ‘faking’ being
autistic (Miller, Rees and Pearson, 2021, p. 5). This is similar to the delegitimising
experiences reported by other NBA people in the literature, most often in interactions with
healthcare professionals (see section on Healthcare and Education).
It is likely NBA people face additional prejudice relating to their multiple identities,
as both autistic and nonbinary populations are known to experience hate crime (Bachmann
and Gooch, 2017; Chaplin and Mukhopadhyay, 2018). Consistent with this, a participant in
one study (Hillier et al., 2020) spoke about being frequently subjected to abuse as a result of
being ‘a highly visible walking signifier of divergence of the cultural norm’ (p. 104),
suggesting they believed they were targeted for being perceived as different. Another
participant from the same study spoke about not changing aspects of their appearance to
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affirm their gender so they could still conceal that aspect of themselves when in hostile
environments. These examples demonstrate some of the hostile treatment NBA people may
face and how perpetrators of this hate may focus on traits of NBA people that separate them
from cultural norms. One such trait that has faced scrutiny is stimming.
Stimming
Stimming refers to self-stimulatory behaviours autistic and other neurodivergent
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people use to self-regulate and communicate. Stimming has also been adopted more recently
as an aspect of autistic culture (Kapp et al., 2019), bringing people together. Research has
begun to look into stimming from the perspective of autistic people. In one study (Kim and
Bottema-Beutel, 2019), explored extracts from blogs relating to stimming and the public
response to a book about stimming called ‘Quiet Hands’. Extracts from NBA people in the
study spoke about facing criticism from family and schools as a child for stimming. They
also talked about stimming as a natural expression of their personhood and how reclaiming
stimming has been empowering and helped them to embrace their autistic identity. A
discussion of stimming is relevant here as encouraging others to stim freely may come from a
position of privilege, and it is important to note this may be more dangerous for some groups
than others to be visibly autistic (e.g. NBA people, people of colour, those who are disabled
in additional ways etc.). This is also the case for the process of ‘unmasking’, where people try
to reverse or stop masking.
Masking
Masking describes behaviours and strategies some autistic people use to suppress
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A term to describe those who have a neurocognitive style that diverges from culturally-determined standards
and performance of neuronormativity. This includes minority neurotypes, such as autistic and ADHD people
(Walker, 2021)
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natural responses and adopt new ones (Pearson and Rose, 2021). Autistic nonbinary people
have been involved in several studies on masking. In general, individuals have reported
similar masking experiences to those of other genders, such as altering their responses and
scripting (Hull et al., 2017; Cook et al., 2021). In qualitative studies, participants also spoke
about similar negative consequences, such as it being exhausting (Hull et al., 2017; Cook et
al., 2021) and related to suicidal behaviour and meltdowns in one individual (Miller, Rees
and Pearson, 2021). There is also some suggestion this population may have unique
experiences of masking as a result of their multiple identities. For example, a participant in
Cooper et al.’s (2021) study spoke about concealing characteristics so they are treated by
others in a gender-affirming way, whereas another recalled not disclosing their gender
identity in unwelcoming spaces (Hillier et al., 2021).
In quantitative studies, one piece of research (Hull et al., 2020) has suggested the
pattern of masking behaviours may be similar in NBA people as those of other genders, as
NBA people showed a similar distribution of responses across factors in the development of a
questionnaire for masking (Camouflaging Autistic Traits Questionnaire, CAT-Q). This
suggests they may not be dissimilar from autistic people of other genders in their pattern of
masking, though it is still possible all groups may mask in ways that are not captured by this
tool, concealing differences. The only other quantitative study to involve NBA people
utilized the same sample and looked at the relationship between scores on the CAT-Q and
mental health difficulties (Hull et al., 2021). Interestingly, nonbinary participants did not
show a significant relationship between CAT-Q scores and mental health difficulties like
autistic participants of other genders. However, this was judged to be related to small
numbers of non-binary people in the study, which would mean only large effect sizes would
reach levels of significance. Overall, these findings suggest masking in NBA people may
share similarities with other genders, however there may be some aspects that are unique,
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highlighting the need for an intersectional perspective in future masking research.
Healthcare and Education
Participants from the literature spoke frequently of their negative experiences in
healthcare environments. This focus was largely due to some studies selecting participants
from healthcare settings, such as gender clinics (Hillier et al., 2020; Cooper et al., 2021), and
others with specific aims to improve healthcare experiences (Hall et al., 2020; Strang et al.,
2021) but this theme also came up organically in other studies (Cain and Velasco, 2021). In
one case, poor healthcare experiences led to dramatic consequences – the participant in Cain
and Velasco’s (2021) study explained how practitioners frequently got their concentrations of
Testosterone wrong, which was a contributing factor in their decision to stop identifying as a
transgender man and start identifying as a transmasculine nonbinary person. Another
participant from the literature remarked on the fact they would be unable to access a gender
clinic due to their dependence on unsupportive family members for medical appointments
(Cooper et al., 2021), highlighting how family can both facilitate and act as barriers to
gender-affirmative support. Individuals also spoke about difficulties finding practitioners
who affirmed their identities (Hall et al., 2020; Hillier et al., 2020), and one reported never
having seen an OB/GYN because, as an adult, they were still (inappropriately) seeing a
paediatrician (Hall et al., 2020). A common experience was invalidation. Participants from
the literature reported professionals not believing them when they said they were both non-
binary and autistic (Hall et al., 2020; Hillier et al., 2020), simply not referring to aspects of
their identity (Cooper et al., 2021) and/or thinking they couldn’t understand their own gender
on account of being autistic (Hall et al., 2020). Participants talked about how this got in the
way of them receiving the healthcare they needed, leading to frustration and desperation
(Strang et al., 2021).
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Participants from the literature also reported negative experiences when at school. A
participant in Barnett and Maticka-Tyndale’s (2015) study reported never receiving any sex
education at the special education school they attended. This lack of information was
compounded by the fact their parents refused to discuss sex and sexuality, highlighting how
those surrounding an individual can act as barriers. Discussion of education and school
settings was also apparent in Kim and Bottema-Beutel’s (2019) study on stimming, where
participants were told by schools to not stim or shamed for expressing themselves in this
way. Although these experiences in education may not be specific to NBA people, these,
alongside experiences of healthcare, highlight how aspects of environment can be disabling
to autistic people (Oliver, 1990) and may be even more so to those with multiple identities,
such as being non-binary and autistic.
Summary
To summarise, this review considered what current research can tell us about the lives
and experiences of NBA people. I first looked at NBA experiences of autism acceptance,
including relationship experiences, stimming and autistic masking, before considering service
experiences in healthcare and education. This review has highlighted that NBA people may
share some experiences with other autistic people, but they also have unique perspectives and
experiences as a result of being nonbinary and autistic. These unique aspects justify taking an
intersectional approach (Crenshaw, 1991) to the current research, as this plurality may create
unique insights and outlooks from which to explore views and experiences about research. As
such, the following sections will outline the implementation of this approach in regards to
NBA individuals’ views on current and future research and how these relate to their lived
experiences.
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Methodology
Approach and positionality
Interpretive phenomenological analysis (IPA; Smith, Flowers and Larkin, 2022)
centres the perspectives of participants, valuing their interpretations of their own personal and
social worlds. It is also highly inductive, which is beneficial for exploratory research. IPA
exists at the intersection of three philosophical schools of thought: phenomenology
(describing and interpreting the meaning of a lived experience), hermeneutics (interpretation)
and ideography (concerned with individual perspectives). These intersecting approaches are
complementary to the intersectional lens utilised in this study, which considers experiences at
the intersection of multiple marginalised identities that are often erased from dominant
narratives (Crenshaw, 1989). IPA allows for these meanings to be revealed through the
interpretation of experiences and perspectives. IPA has been used in one previous study with
nonbinary autistic people (Cooper et al., 2021) and is becoming more widely used in autism
research (MacLeod, 2019).
Hermeneutics inextricably involves the engagement of the researcher’s own
worldview. In positioning myself, I bring my own views, beliefs and assumptions - these may
colour interpretations but also provide insights that may not be recognised by others. As such,
my location as autistic, white, middle-class, an intersectional feminist, an ex-teacher and a
member of the LGBTQ community may influence the perspective I take.
Research design
This study utilised a sequential multimethod design (see Figure 1). Participants were
first asked to produce ‘participant research questions’ (P-RQs) as part of a pre-interview
activity. The P-RQs directed the first half of qualitative interviews. The second half involved
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a discussion around an activity where participants ranked statements about research in order
of importance. Methods addressed different aspects of the research questions, demonstrating
the complementarity of a multimethod approach (Tashakkori and Teddlie, 2010).
Figure 1
Illustration of research design
Data was collected from P-RQs, the ranking statements task and the interviews. After
transcription, analysis used IPA to produce themes at the level of the individual before
looking for commonalities across the group. Participants provided feedback on interpretations
Pre-interview activity
IPA analysis at level of the individual
IPA analysis at the level of the group
Qualitative interview
Participant feedback on interpretations
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made and their involvement. All steps of the design will be explored in further detail below.
Participant Selection
Initially, it was decided to identify ten NBA adult participants. After considering the
time commitments of IPA, I chose to follow the guidelines for participant numbers for a
Master’s level IPA project (Smith, Flowers and Larkin, 2022). As such, five participants were
selected opportunistically by contacting individuals directly on Twitter. Participants were
identified based on their Twitter profiles (where they disclosed being autistic and nonbinary)
with a focus on selecting individuals from a range of backgrounds. The sampling approach
was consistent with IPA, which is interested in selecting participants who provide particular
perspectives.
Potential participants were contacted on Twitter with a message introducing myself,
the study and why I believed it was important (see Appendix B). They were provided with
links to download the information sheet (both a written document and a video) and the
consent and demographic questionnaire (see Appendix B). If individuals wished to
participate, they were asked to send the completed questionnaire to my university email
address to arrange an interview.
Participants
Five NBA participants took part, with almost equal numbers of those assigned male
and female at birth. All use they/them pronouns. Some demographic information is displayed
in Table 1. A brief description of each participant is provided below to give a fuller picture of
their individual perspectives. Descriptions were informed by information participants
provided in their demographic questionnaires, information from their Twitter profiles and my
initial impressions. They were approved by participants during feedback.
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Table 1
Table of participant characteristics
Note. Age was calculated using year of birth
Kay
Kay is a neuroqueer
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advocate who is also researching LGBTQ autistic experiences as
a postgraduate. Kay is bisexual and a new mum. They are passionate about their work as a
disabled youth project leader and wheelchair basketball coach. Kay came across as
knowledgeable about research involving autistic transgender people and reflective about the
impact of different issues on people from all walks of life, including from the many
communities they are involved in.
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A term coined by Nick Walker to describe the simultaneous queering (disrupting or subverting) of
heteronormativity and neuronormativity. The term has since been adopted as a social identity to describe an
individual whose identity has been shaped by engaging in these embodied practices (see Walker, 2021)
Participant
Gender
Age
Ethnicity
Nationality
Country
of
Residence
Autism
diagnostic
status
(age at
diagnosis)
Other
neurodivergences
Physical
disabilities
Interview
format
Kay
Trans
masculine
non-binary
32
White
British
British
UK
Formally
identified
(29), OCD
ADHD
Wears
glasses,
asthmatic
Online
video
Rae
Non
binary,
transgender
44
White
North
American
USA
Formally
identified
(41)
ADHD
Yes
Online
written
Sam
Non-binary
31
Chinese
(Hokkien)
Singaporean
Singapore
Formally
identified
(30)
ADHD
Chronic
pain
Online
audio
Tas
TwoSpirit,
non-binary,
Autigender,
Indigenous
woman,
gender
fluid
29
Native
American,
white,
Latinx
North
American
Germany
Formally
identified
(16)
ADHD,
synesthetic,
dyspraxia,
hyperlexia
Yes
Online
video
Lauren
Demigirl
31
White
North
American
USA
Self-
identified
auditory
processing
disorder,
probably
dyslexic
Yes
Online
video
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Rae
Rae describes themself as a transgender autistic savant. Central to their identity is
being a parent, their time living in Iceland and their advocacy work in Twitter Spaces where
they enjoy educating people about what they know. Rae came across as passionate about
inequality and had strong ideas about what they feel needs to be done to challenge systemic
injustices.
Sam
Sam is a secondary school educator in Singapore with experience being involved in
research. In our interview, Sam was contemplative and interested in gaining a greater
understanding of issues relating to autistic experience. Sam reflected on their experiences
teaching autistic students and kept in mind how issues discussed impacted the lives of their
students.
Tas
Tas is a doctoral student in clinical psychology with a strong drive to help people
through their work as a therapist or healer. Central to Tas’ sense of self is their TwoSpirit
identity and their relationship with their Native American culture and spirituality. Tas spoke
powerfully about their family’s forceful separation from their Native American community,
abuses they have faced and their journey to their present day. Tas came across as empowered
in their approach to coming to grips with these experiences and empathic to the struggles of
others.
Lauren
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Lauren is an early career academic who identifies as bisexual, demisexual and
situationally mute. Lauren spoke about experiences that touched upon many aspects of their
identity, particularly their demisexuality and family. Throughout, Lauren was reflective about
their own experiences and considered how they may be viewed through the eyes of others.
Materials
Pre-interview activity
One week before the interview, participants were asked to complete an activity in the
week leading up to the interview, which involved coming up with P-RQs from their daily
lives. Participants were sent two supporting documents to help come up with questions and
record them (see Appendix C).
Ranking statements activity
Statements describing the focus of past research involving NBA people were ranked
in order of importance in the second half of the interviews. Statements were produced from a
literature search, which were later shortened to reduce cognitive demand (see Appendix D).
Hosted on Google Jamboard, participants’ mouse movements were observed, facilitating
discussion.
Interview schedule
A semi-structured interview guide generated discussion around participants’ P-RQs
and the ranking statements activity (see Appendix E). Questions encouraged expansive and
open responses regarding participants’ views and experiences. Feedback from two pilot
interviews and from an online group for autistic researchers (who I asked for feedback on the
guide) led to changes. These included the addition of a final question asking participants to
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compare their responses to the two activities and word changes to support the participation of
specific autistic profiles (see annotated interview guide in Appendix E).
To support accessibility, materials included visuals, clear wording, links to screen-
reading software and an outline of the interview format (see Appendix D). Participants chose
the mode for the interview (Zoom video calls, Zoom audio calls, or text-based instant
messaging) and could request further accommodations.
Procedure
After participant selection, interview arrangements were made (see Appendix B). One
week before, participants were sent an email with materials relating to the pre-interview task
(see Materials). From the second interview, participants were also sent a copy of the ranking
statements task to look at or complete. This change was after feedback from my first
participant on the demands of this task. Participants were asked to send a copy of their P-RQs
a few hours before the interview.
Interviews
Video and audio interviews took place on Zoom. After technical difficulties on
another platform, the chat function on Zoom was used for the written interview. For visual
and audio interviews, my first lasted 2.5 hours with the following three approximately 1.5
hours. The written interview was split into two parts occurring ten days apart. Collectively
written sessions lasted 4 hours.
Initially, the study was re-introduced, I checked for understanding over consent and
gave opportunities for participants to ask questions. I then prepared them for the types of
questions I would ask and information I was looking for. Participants were first asked to
consider what research meant to them in general before moving on to P-RQs. Questions
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about P-RQs encouraged reflection on what made them think to ask the question and how it
related to their own and others’ lives. Between 3 and 6 P-RQs were discussed depending on
length and depth of responses. Throughout, prompts encouraged depth and expansion.
In the second half, the ranking statements task (see Materials) was explained to three
participants who had not completed it before the interview. Participants were asked if they’d
like to ‘think out loud’ or answer questions after. All three chose to talk during the task,
which was complemented with prompts and follow-up questions.
Follow-up questions asked participants about decisions around the placement of the
top and bottom three statements and how these related to their lives. They were then asked to
reflect on all the statements and consider how they related to the experiences of others in
their communities and children or young people. Finally, I asked participants to reflect on
their P-RQs and how they related to their choices in the ranking statements task.
To close, I gave a summary and checked participants were still comfortable to
proceed. One person said they struggled with some of the issues we had talked about but
clarified they had still been willing to talk about them. Another was concerned with being
identifiable - we decided I would send them a copy of the transcript to approve to ensure no
identifiable information would be included. All participants agreed to be contacted for
feedback on interpretations.
Transcription and analysis
Transcription
Video and audio interviews were transcribed using Otter. Transcripts were then
corrected by listening to original recordings. Transcripts were then reviewed a second time to
add pauses (‘…’ or [long pause]), verbal emphases (underlined), nonverbal utterances (ʇ - a
dental click ‘tut’ sound) and gestures ([action]). The written interview was copied from the
24
Zoom ‘chat’ into a document.
Analysis
To ensure a robust approach, I followed the steps for IPA analysis outlined by Smith,
Flowers and Larkin (2022).
Step 1: Starting with the first case - reading and rereading. First, I listened to
recordings of the interviews alongside the transcript until I could internalise and imagine the
voice of the participant. This step immerses the researcher in the interview and centres the
participant's perspective. I then produced visuals to track the narrative through the transcript
and early models to represent initial thoughts (see Figure 4).
Figure 4
Research journal notes for Step 1
Step 2: Exploratory noting. This step involved keeping an open mind to meanings
emerging from the transcript with consideration of how participants made sense of their
experiences. Exploratory notes included aspects that stayed close to the participant’s explicit
meaning (semantic notes) and aspects that had a more interpretive focus (latent notes), a
distinction borrowed from reflexive thematic analysis (Braun and Clarke, 2006). Digital and
manual methods were explored (see Figures 5 and 6).
25
Figure 5
Digital method for exploratory noting and experiential statements
Figure 6
Manual method for exploratory noting and experiential statements
26
Step 3: Constructing experiential statements. Experiential statements summarised
the most crucial exploratory notes, navigating a balance between specificity and the whole
text (see left column in Figures 5 and 6). For my first transcript, I produced 211 experiential
statements. I then recognised these may have remained too close to the transcript (see Figure
5). Following transcripts produced fewer experiential statements capturing a greater portion
of the text (see Figure 6).
Figure 7
Digital method of coding for Step 4 shows the process for one participant for RQ2
27
Note. Codes on the right in the first image are then organized into a structure for RQ2
in the second image
Step 4: Searching for connections across experiential statements. This step
involved moving away from the original transcript and looking for patterns across
experiential statements. Statements were first organised by research question. Digital and
manual methods were explored (see Figures 7 and 8). Manual methods involved sorting
statements into clusters. Digital methods involved coding statements on nVivo then
reviewing statements with the same codes and making connections between codes.
Figure 8
Manual method of coding for Step 4
28
Step 5: Naming the personal experiential themes (PETs) and consolidating and
organising them in a table. Step 4 clusters were brought together to create a document of
PETs for each participant (see Appendix F). Documents consisted of themes and sub-themes,
illustrated with experiential statements and segments of transcript that prompted them. After
the first transcript, supervisors checked for the plausibility and credibility of my
interpretations, considering the evidence trail. They provided points for reflection, but agreed
the account was credible.
Step 6 involved repeating steps 1-5 with the following transcripts with each treated on
its own terms.
Step 7: Working with PETs to develop Group Experiential Themes (GETs)
across cases. GETs represent similarities between participants and the unique ways they
embodied different themes. Similarities were noted in a spreadsheet (e.g. see Figure 9).
Comparisons were made at all levels, starting with PETs and ending by reviewing the
29
original transcripts for aspects given new significance after considering the larger group.
GETs were organised into a coherent structure (see Figure 10), producing a document
of GETs (see Appendix F).
Figure 9
Spreadsheet of emerging similarities between participants
GETs were sent to a supervisor for feedback on coherency and any further points.
This led to changes in the sub-theme ‘Educating and supporting autistic people’ to make clear
disparate views. Participants were then sent an amended copy of the GETs with their
contributions, information to be included in the ‘Participants’ section and a document with
questions for feedback on interpretations and their experience being involved in the research
(see Appendix H).
Figure 10
Structure for GETs
30
Ethics
Ethical approval was successfully sought through my supervisors by the University of
Birmingham (see Appendix I).
Consent and withdrawal
Participants gave informed consent by reading or watching the information sheet and
completing a digital consent form (see Appendix B). Participants were told they would be
able to withdraw with no penalties up until a month after the interview. After this point they
could comment on interpretations but would not be able to withdraw due to time limitations.
Confidentiality
Participants were asked to respond to the invitation to interview through my
university email, so no sensitive information was disclosed on Twitter. Data was stored on
secure University servers. Completed demographic and consent forms were stored separately
from transcript data.
For the ranking statements activity, participants were given individualised links to
31
documents on Google Jamboard. After the interview, copies of the documents were removed
from Google and stored with the other data. Interview recordings and copies of the chat
transcript were stored locally on University servers using Zoom. This meant recordings were
not stored on the Zoom cloud.
Once transcribed, recordings were deleted from the University servers and Otter,
though participants were informed all services may maintain traces. When writing this paper,
all identifying information was removed from transcripts with participants given pseudonyms
to maintain anonymity. Inclusion of information to describe participants was chosen
selectively to be unidentifiable.
32
Findings and discussion
Results and discussion sections are integrated so literature connections can be made
alongside findings. Due to word limitations, a limited number of examples have been used to
illustrate the themes. The full document of GETs can be viewed in Appendix G. The notation
(…) denotes where extracts have been shortened for brevity.
RQ1 - What are participants views on current research involving nonbinary autistic
people?
Themes arose from discussions around the ranking statements activity. These were:
The Nature of Research and Autism Research; Representation and Issues of Critical
Importance.
The nature of research and autism research
This theme addressed how participants came to understand ‘research’ and its purpose
before critiquing autism research. Participants had varied views of what ‘research’ may look
like:
Research could mean a lot of different things(…)peer reviewed journals, internet
searching, books, history, story telling from oral traditions (Rae)
Tas highlighted research as a product of ‘Western society’, calling attention to
traditions surrounding research and academia as an institution and how they may limit the
knowledges represented (Smith, 2021).
Participants agreed research should inform and improve lives by being both ‘timely
33
and important’ (Lauren). In response, they critiqued research that was pathologising or
focused on negative events without considering ways forward.
Past research agrees that autism research should focus on areas of practical concern
(Pellicano, Dinsmore and Charman, 2014). A tendency to focus exclusively on negative
experiences is evident in the literature review for the current paper, where ways forward were
rarely considered (e.g. Strang et al., 2021). In their feedback, Lauren highlighted how this
contributes to a pathologising narrative in wider society as ‘research doesn’t exist in a
vacuum.’
Representation
Participants reflected on groups that are typically under-represented in research. Sub-
themes were Autistic, Transgender and Racial and Cultural Diversity, though participants’
responses frequently considered how identities intersected.
Autistic. Participants thought research represented a limited range of autistic
experiences. Sam reflected on the critique that research tends to focus on the views of ‘more
vocal’ members of the autistic community:
a lot of us are, are concerned about the people who are less able to
communicate(…)But on the other hand(…)if we're not careful with, with the research
that we also end up over representing certain views? Because certain people are
more able or willing to communicate and take part
Some research has considered how to include those who are non-speaking or partially
non-speaking. For example, Barnett and Maticka-Tyndale’s (2015) study included the option
34
for email-based interviews, enabling the involvement of a participant who uses alternative or
augmented communication (AAC). This allowed for powerful insights into their views of sex
and relationship education, unique to their experiences of specialist educational provision.
Transgender. Participants critiqued the representation of nonbinary and transgender
autistic people. Kay noted how even in transgender autistic research, nonbinary experiences
are erased:
as you know, everything's like cis
3
white boys…so that's, like, crap(…)nonbinary,
autistic-specific research, like…that doesn't exist, because everything(…)is like, still
very binary, like, but it's just trans binary now [laughs] (…)Where are the nonbinary
folk? Like, where are the agender folk? Where are the genderfuck folk? Where are the
gendervagues?
Similarly, Lauren talked about how neither nonbinary nor autistic people have a
platform to express their views. It is important to consider how research can provide such a
platform, but also how it has the power to misrepresent or erase experiences (Catala, Faucher
and Poirier, 2021).
Racial and cultural diversity. Participants observed that research is limited to
experiences of white autistic people from Anglocentric countries, erasing others’ experiences.
Sam reflected on this gap in research:
a lot of the research tends to be focused on white, white people(…)I suppose, like, the
3
Short for ‘cisgender’ referring to people who identify with the gender they were assigned at birth (i.e. are not
transgender)
35
nature of it [ʇ] a lot of research being English kind of just makes it that way to a large
degree? But even in, like, Anglocentric countries or English-speaking countries,
there's quite a large racial diversity. So I think, I think it's quite important to account
for that
One explanation is that autism has long been considered culturally universal (Perepa,
2019). As this view is changing, research needs to work on representing cultural and racial
diversity while considering barriers to publication faced by researchers around the world
(Purwanto, 2021). Research may also benefit from insights gained. As Tas notes, Indigenous
knowledges may provide alternative perspectives, whereas their erasure may limit narratives
that are produced (Catala, Faucher and Poirier, 2021).
Ranking statements activity
Table 2 shows what order participants ranked the statements. It is important to note
many participants saw patterns between areas and found it challenging to rank some issues as
more important. As such, the table is illustrative of the range of views.
Overall, participants felt differently about many statements, indicated in the large
spread. This calls into question past research that has used similar methods to generate
research priorities (e.g. Frazier et al., 2018). Such variability suggests there are many issues
relevant to different people.
Participants ranked some statements similarly. All participants ranked ‘access to
services’ and ‘mental health and wellbeing’ as important and ‘statistical relationship between
being autistic and gender diversity’ as less important. These findings reflect themes expressed
for this research question, especially those related to the critical importance of certain issues.
36
Table 2
Table illustrating the spread of how participants ranked statements from most to least
important
Most important Least important
1
2
3
4
5
6
7
8
9
10
11
12
Embracing autistic differences
(e.g. language preferences and
stimming)
L
S
T
R
K
Autistic masking
L
T
S
R K
Negative life events (e.g.
prejudice and unwanted sexual
encounters)
R
T L K
S
Identity and experiences as a
member of multiple minority
groups
T
L
S
K
R
Statistical relationship between
being autistic and gender
diversity
R
L S
T K
Sex and relationships
K
R
L
T
S
Friendships and how to have
satisfying friendships
R
T K
S
L
Access to services (e.g. education
and health)
T
L S K
R
Autistic experiences in the
workplace
S
R
L
T K
Mental health and wellbeing
(including autistic burnout)
R L S
T
K
Physical health needs (e.g. binge
drinking, sexual health and sleep)
R S
K
L
T
Tools to support autistic people
to take part in research
K
T
L
S
R
Note. The median is represented in a darker colour to represent the central tendency.
The table is for illustrative purposes and will not be used to make generalised statements
37
Critical importance of certain issues
This theme drew on how participants made sense of the ranking statements activity.
Sam referenced ‘Maslow’s hierarchy’ and Lauren spoke about a ‘low-level hierarchy of
needs’. However, participants had different views on which needs were most crucial, as
reflected in Table 2. Kay noted how areas were connected as statements they rated higher
supported other areas:
it's all wrapped up in this as well. Like, if you sort out someone's mental health needs,
and their physical needs, like…work- working becomes, like, a much more viable
option
The mention of basic needs and Maslow’s hierarchy suggests participants are aware
that basic are not being met, speaking to a wider societal problem. If research is to have a role
in reversing societal damage, it is important to consider directions for future research.
RQ2 - What do participants think future research involving nonbinary autistic people
should focus on?
This question explored P-RQs (see Appendix C). Not all questions were discussed, so
not all are addressed in the themes. This question also drew on discussions of the ranking
statements activity as participants moved seamlessly from considering current research to
future possibilities. Themes were: The Future is Community-Led and Education.
The future is community-led
Participants were knowledgeable and had strong views about community involvement
38
in research. This is consistent with repeated calls for greater collaboration by autistic
advocates (Milton, Mills and Pellicano, 2014; den Houting et al., 2021; Stark et al., 2021).
Kay reflected on how participatory research may lead to societal improvements:
if the, the research found- has a foundation in actual lived experience(…)the rest of
the things on this list will actually improve, like, not straightaway, not overnight. But
if research underpins policy, then, then yeah, I think that's a winner
This sentiment is reflected in Pellicano et al.'s (2021) study who identified a theme of
‘research as advocacy’, demonstrating how participants viewed research as a way to enact
change.
Implementing participatory research. Participants talked about representation of
community members as valued and paid members of research teams. Tas had clear ideas
about how collaborative and actionable research could be designed:
we could just, like, get a support group together and put, you know... twelve people
together to talk about it from all these various cultures, or whatever? And it could just
be like, an hour over tea? And we come up with some ideas and write it all up. And...
and put it in a book
This idea echoes messages from transformative- emancipatory research, which is
centred around reflexivity, community engagement, reciprocity and action (Mertens, 2010).
The reference to ‘over tea’ situates the research in culturally familiar practices which may
draw on culturally responsive ways of knowing (Smith, 2021). Such a design could be
39
implemented in various areas, including education.
Education
This theme was organised into three sub-themes: Educating and Supporting Autistic
People, (un)Teaching Prejudice and Sex and Relationships Education.
Educating and supporting autistic people. Participants spoke about different
aspects of education - schools, academic learning spaces and empowering individuals. As
such, views were disparate and expressed various perspectives.
Sam talked about their belief in holistic approaches that put the individual at the
centre and the challenges of implementing this as a teacher:
so that's the difficult thing of like, how do we balance out the picture for every single
child(…)you're going to need a completely different set of interventions or different- a
different concept of how, how do we educate this person, so that they can, you know,
achieve what they want to achieve
In academia, Lauren talked about their experience of a ‘hostile learning space’ and
what they felt were features of an ‘open learning space’:
like, you let people ask their questions, and you answer them and you... Like, at
whatever level they're at? …Yeah, it's meeting people where they're at. And... and
listening(…)like not gatekeep knowledge
Without being specific to a particular educational context, Tas then spoke about how
40
autistic people should be taught and encouraged to ‘hold space’ for themselves and others
and advocate for their needs:
like, speak for yourself and justify it? And, like, explain why you need it? (…)just,
like... just unapologetically being yourself, taking up space
Collectively, these examples show that approaches need to be tailored to particular
environments (i.e. school or universities) and individuals. In schools, some approaches, such
TEACHH promote an individualised perspective (Mesibov, Shea and Schopler, 2005).
However, to implement this fully it may also require practitioners to alter their perspectives
on autistic needs and behaviours so they can understand that person holistically. This may
involve addressing prejudices and improving knowledge.
(Un)teaching prejudice. Participants saw prejudice as a learned process reinforced
by society. Kay reflected on interactions between parents and children where disability is not
spoken about as communicating wider societal prejudices and missing out on learning
opportunities:
But instead of taking that opportunity to like [sighs] humanize the person that you're
talking about(…)it just tells children that, you know, ‘Oh we don't talk about
disability’, ‘Oh, no, it's really rude to talk about that,’ or, or that these people are
unapproachable? Or don't have their own stories?
Rae spoke about ‘human classes’ as a way of reversing prejudice, which would be co-
designed and taught by neurodivergent people on ableism and neurodivergent experience:
41
This class would contain anti ableism training and awareness. Trauma informed
people, teaching normies how it is really for the rest of us. Anti-stigma training too.
These examples speak to different approaches. Rae believes awareness should be
taught explicitly, whereas Kay’s approach is more interactional. Interventions to encourage
mutual understanding were also noted as a priority by autistic adults in Pellicano et al.’s
(2014) study, and as an alternative way of improving mental health outcomes by Benevides et
al. (2020). In terms of work with young people, it is likely implementing approaches, would
also require work with ‘their parents to teach them to not pass on unnecessary biases’ (Tas).
Schools should, therefore, consider how to involve the whole school community in
initiatives.
Sex and relationships education. Several participants spoke about experiences of
sexual and relationship abuse. Kay highlighted how neurodivergent people, particularly those
who receive personal care, are ‘incredibly vulnerable’. This is supported by research that
reported nine out of ten autistic women as survivors of sexual violence (Cazalis et al., 2022)
and ten percent of autistic children and teenagers at inpatient facilities as survivors of
molestation (according to reports by caregivers; Brenner et al., 2018, p. 20). Effective
sexuality education, including preventing sexual violence, was also identified as a priority of
for future research by Dewinter, Miesen and Holmes (2020).
Both Kay and Tas believe in having candid conversations with children and
answering questions in age-appropriate ways. Tas reflected on how they had approached this
with their daughter:
42
just like, being candid from the very beginning. I, like, with my daughter, I have just,
um... like, my daughter was, unfortunately, sexually abused. So I, the route I took was,
I am just going to answer all of her questions as they come up, because I believe if
they're asking a question, they have a need for an answer? There's a lot of, like...
nuance around like finding an age appropriate answer for them?(…)Just like access
to information, access to good information, access to- in particular, access to models
of healthy relationships, and access to, um, understanding abusive and manipulative
tactics.
These suggestions are similar to those provided by a NBA participant in Barnett and
Maticka-Tyndale’s (2015) study, who recommended ‘using appropriate words…Not kid-
words or “polite” words’, suggesting honesty and a candid approach are valued.
RQ3 – How do participants' views relate to experiences in their lives and those of their
communities?
This question situates ideas discussed above in participants’ experiences. Themes are
Influences of Experiences Growing Up, Balance and Conflict, Self-discovery and
Empowerment, Drawing on the Experiences of Others and A Force for Change.
Influences of experiences growing up
Participants drew on early life experiences to explain and reflect on their views. Tas
spoke about their generational trauma and separation from their Native American roots
alongside an abusive counter-culture, which lead to a sense of fragmented identities in their
earlier life:
43
My dad was, 'scooped' (…)when in the 60s and early 70s, a bunch of Native American
children were forcibly taken away from their communities and their families and
adopted out to white families? And so, um, so he spent decades looking for his family,
and I am now in, like, I've spent over a decade looking for them, because we still, like,
I'm as close as anyone's ever been. But like, I am acutely aware, I'm Native American.
I, like, m- my default is rejecting white culture [laughs] American culture. And, and
like, I've always been drawn there and like(…)that's home [hand makes arch
movement). I unfortunately was raised... my mom and her side of the family were very
into Christianity and Catholicism. And it was hugely damaging… to my identity.
Sam’s perspective as a teacher was informed by their difficulties as a teenager being
overlooked:
I've always felt like, like almost like a forgotten child kind of? Like, like, um... I wasn't
disruptive in class. I wasn't having any ma- major issues. Academically, I was doing
okay …um... probably fairly well, I suppose. Um... but my teenage years were very
difficult
Rae also spoke about their experiences in education, where they were penalised for
their ‘gift’ for ‘years on end’:
I got marked down in math for not showing my work constantly even though I had the
right answers. For years on end. I was penalized for being a mathematical
savant(…)made to feel badly about being gifted
44
Lauren recalled ‘severing’ sensory connections to avoid overstimulation:
I would, um... [ʇ] like, kind of sever [chopping gesture] certain... um, uh...
connections to my body, so that I wouldn't get this overstimulation or whatever?
Which led to poor interoception later on, that I'm dealing with
Kay talked about their positive experience in their Scouts group with other
neurodivergent young people and how it has informed their work as a youth worker:
now when I look back at the scout group, I think, yeah, there wasn't, there probably
wasn't a single neurotypical
4
one among us(…)and because of that, I got so much out
of my scout group.
Participants used experiences to explain their journeys to their present day, the
choices they made and what issues they believed to be important or thought research should
address. These various experiences emphasise the individuality of participants and how this
informed their unique perspectives.
Balance and conflict
Participants sought balance in their lives and frequently faced conflict and pressure
from others. Sam spoke about feeling the pressure to shape themself for other people:
I've always felt that tension between like, ‘This is who I think I need to be’? And, um,
driven entirely by social identity for that. Versus, like, the inner sense of
4
Neurotypical people have a neurocognitive style that falls within dominant societal standards of ‘normal’
(Walker, 2021)
45
self(…)Which may not be… the more socially conventional.
Lauren also talked their asymmetrical haircut is a subject of debate in their family:
And my aunt noticed my hair(…)I said, Like, my m- but my mom doesn't like it. Um,
and she- my mom said something like, ‘Oh, I'm only your mother.’ Like, like, I... like
her opinion matters so much.
Rae talked about a sense of alienation by others in society which they attributed to
ableism and prejudice:
I’m living autistic in a NT
5
world. I experience the ableism and the prejudice first
hand in my life. Dating is the worst as an autistic adult. Almost every single thing
about the NT world bothers me, actually. From capitalism to politics. It’s noisy, cruel,
and not made for me
Kay spoke about their atypical relationship to work and negotiating societal
expectations when applying for a job:
people say, ‘Oh, so when did you stop doing that?’ No, I haven't stopped doing that.
‘Oh, so you're doing this, this, this and this, but you're also going for this job as
well?’ And I think some people are kind of a bit…put off by that? Um, because, I don't
know, they think, like, ‘Oh, well you have a baby, but you're also doing like 5 million
other things.’
5
Abbreviation for ‘neurotypical’
46
Tas expressed frustration about needing to get a PhD to ‘heal’ others, which would
not have been necessary if they hadn’t been estranged from their culture:
at this age, I could be almost like a full-fledged practicing medicine person. But at
this age, I am stuck in the Westernized context of I'm having to get a PhD, in order to
get acceptance into white society(…)my PhD is a piece of paper to say, Hey, I played
by your rules? And I don't like them. And so I'm going to shred them now. And I'm
going to build something better.
This theme highlights how participants experienced conflict and pressure from many
directions. Experiences are consistent with models of minority stress, which involves a
disconnect between dominant and minority values and the resultant conflict with the social
environment (Pearlin, 1989; Meyer, 1995; Mirowsky and Ross, 2017). Minority Stress has
also recently been extended to the experiences of autistic (Botha and Frost, 2020) and
nonbinary people (Lefevor et al., 2019) whose ways of being in the world or gender
expressions are subject to prejudice.
Self-discovery and empowerment
Participants experienced empowerment, self-understanding and acceptance since
discovering and embracing aspects of their identity including their culture, gender and being
neurodivergent.
Rae described a process of peeling back layers of trauma to understand themself
better:
47
I’m still unpacking my own ableism. Trauma and ableism have layers(…)Things make
so much more sense than before
Tas spoke about their new understanding of themself as unique and how this
contrasted to their previous understanding of their differences:
I think that maybe someone who was raised in like a restrictive, like, situation like I
was, um... might think that [unique traits] made them bad? Or might think that it
made them a freak? Or they might think that it made them an outcast? Or that they're
not good enough? Or that they need to change themselves? Um, which is very
different from the cultural context that I have now of 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
Sam reflected on their experiences of meltdowns as a shared experience leading them
to realise they were autistic and how to support their students:
actually that's how I kind of figured out I was autistic. Because I was like, looking at
the kids having meltdowns, I realized, ‘Oh, okay, I have meltdowns too’ (…)having
the self-awareness that I'm autistic has helped me to kind of, um… have more insight
on how to manage and identify what's not done for myself?
Recognising they were autistic helped Lauren to consider how they could use
alternative forms of communication:
especially since I've made this connection of being autistic, it has helped me, and
48
knowing that I actually become selectively mute when I get really depressed? Has
actually... helped me realize that, like, Oh, I can use a tool to like, communicate when
I'm feeling really bad. And I just never thought of that before
These extracts indicate participants felt positive about recognising aspects of their
identity and the self-understanding that followed. This is consistent with research that
suggests learning they are autistic can often help people to understand their differences and
reframe their experiences (Humphrey and Lewis, 2008; Mogensen and Mason, 2015; Oredipe
et al., 2022). Research has also found, however, that some may struggle to reconcile with this
view of themselves (Humphrey and Lewis, 2008; Mogensen and Mason, 2015). It is,
therefore, important to consider how individuals are told they are autistic, which may
influence their understanding and subsequent identity development (Riccio et al., 2021).
Drawing on experiences of others
Participants made sense of their experiences and topics of research by relating to
others’ experiences. Kay talked about numerous people who didn’t seek an autism diagnosis
because it could impede gender healthcare:
is it's not like- there's enough people I've spoken to where it's not coincidental
This is consistent with past research that reported individuals not being taken
seriously when disclosing they were autistic (Hall et al., 2020; Hillier et al., 2020; Cooper et
al., 2021) and highlights how individuals may draw on the experiences of others in the
community to make decisions that affect their health and access to services.
Tas reflected on stories of an autistic friend who were supported in embracing their
49
TwoSpirit identity within their community, which allowed Tas to view their experiences from
this perspective:
they, when they grew up in the culture, and when they were a child, they had a
mentor, who was also… TwoSpirit, who, um, was given to them, like, was given to
them by the, like, the Elders. She was an elder herself, who did a ceremony with the
child to help them identify this in themselves, to help them, like, learn what it meant
and, and all of these things(…)so that was like a transitional moment in their lives.
They had that really young, they knew what they were, that helped guide them
This theme demonstrate how participants’ understanding of others’ experiences
influences what they feel to be important, but also provides them with alternative
perspectives on their own lives.
A force for change
Participants were highly involved in their communities. Both Sam and Lauren spoke
about their roles in supporting students. Lauren talked about debriefing some PhD students
they mentored about the behaviour of another academic in a reading group:
messaged them later. And I was like, That is not acceptable behavior. Like this is, um,
like what he did was wrong. And that's not the way academia should be
Kay spoke about their approach to their youth work and their role in normalising
neurodivergent behaviours and needs:
50
what I do now is, you know, 'You're not the only person here,’ and ‘Okay, yeah, if you
want to stim and flap, that's fine.’ And, you know, ‘We can have a bit of quiet time,’
and ‘This is what we're kind of generally doing today, but if we don't really get there,
then it's not really a problem.’ Yeah… ‘I can understand why you'd have issues with
that. I can help you with that’
Rae spoke about their involvement online:
I’m actually taking part in Twitter spaces now. I’m co hosting some mental health
spaces and some LGBTQIA2S spaces too. We discuss all topics with those heavy
experiences
Past research has emphasised the importance and difficulty of finding communities of
similar and accepting others for autistic nonbinary individuals (Hillier et al., 2020; Cook et
al., 2021). The extracts highlight how communities are co-constructed through histories of
work on behalf of community members (Marx, 1887). Constructing spaces embracing
nonconventional ways of being, such as those who are nonbinary and autistic, may require
even further work, as such spaces involve reshaping the established ‘contours of habitable or
liveable space’ to create places ‘queer moments’ can occur (Ahmed, 2006, p. 106). It is
crucial to recognise, therefore, the personal cost to community members involve in the work.
For example, Tas reflects on ‘wasting my… energy on people who… won’t value it’,
highlighting how communities need to put support structures in place to protect the resources
of its members and share this work fairly.
Feedback from interpretations
51
Four out of five participants provided feedback in time for the dissertation deadline
with one requesting further time. In general, participants were happy with the experience of
being involved and thought interpretations made sense. They reflected on future implications,
such as work that may come out from this project and how they would like to see similar
examples of research in the future. In response to feedback, minor word changes were made.
I did not disagree with any of the suggestions so all were implemented and can be viewed in
Appendix G.
Participants had mixed feedback on the activities. In coming up with P-RQs, Tas
thought ‘it was really good to have us come up with our own questions’ as it put participants
in control. Kay, however, found it difficult coming up with questions and ‘felt a little on the
spot with that’ and Rae was confused about the scope of what their questions should focus
on. Similarly, for the ranking statements task, Kay thought it was ‘a good activity, especially
as I could talk/think aloud whilst doing it’, whereas Rae found ‘a lot of them overlap a bit
which makes ordering them more difficult.’ The feedback illustrates how participants
experienced different challenges, which has implications for considering the demands of
participant-led activities and how to come up with activities and ways of explaining them that
put participants in control but are not overly demanding or confusing.
In feedback on the interview, participants commented on how our dynamic felt open
and relaxed, a ‘pleasant and safe place to express myself openly’ (Tas). I also asked
participants for feedback on being interviewed by an autistic researcher. Lauren said they
didn’t feel judged for ‘my ideas or how I talk’. Kay spoke about a ‘shared culture, language
and understanding’ and how it felt like ‘doing research with neurokin
6
as opposed to having
research done to me’. A feeling of mutual understanding was echoed in Pellicano et al.’s
(2021) study where participants interviewed by an autistic researcher spoke about not feeling
6
A community term referring to the kinship found with others of the same neurotype
52
judged and felt respected and included. Other features, like being nonbinary and age or
racial/ethnic background, may also impact the interviewer-interviewee relationship (e.g.
Greene et al., 2009). Research teams should, therefore, try to reflect a diverse range of
identities and backgrounds.
Strengths and limitations
Strengths
An initial strength was the study’s purpose of understanding and advising on what
autistic nonbinary people want from research, in support of epistemic justice (Catala, Faucher
and Poirier, 2021). This purpose was implemented using methods - P-RQs allowed
participants to direct the flow of the interview towards areas most relevant to their daily lives.
I also gave participants the opportunity to feedback on my interpretations. With more time
and resources, I would have liked to include other NBA people as co-researchers for the
analysis and interpretation. This would have benefited the project by providing multiple
perspectives which could have led to additional insights.
Another strength was the use of an intersectional lens to view participants’
experiences. By considering the views and experiences of participants who were both
nonbinary and autistic, this encouraged multi-dimensionality, creating a fuller picture of their
experiences. For example, I also considered the role of other aspects of their identity, such as
cultural backgrounds and experiences growing up. This multi-dimensionality can be seen in
how participants were not considered passive and instead looked at how they played an active
role in co-creating their communities. In line with IPA, this created a well-rounded
perspective through which to view participants’ perspectives as individuals.
A final strength is the contribution of this research to the literature on what autistic
people think research should focus on, particularly the fresh perspective introduced by this
53
study that looks more deeply into how these views are shaped by individual experiences. The
implications of this will be discussed below.
Limitations
An initial limitation is related to the backgrounds of participants. Although it was not
known before the start of the study, three participants had experience as researchers at
postgraduate level or above and another had experience participating in research and
influencing policy. In some ways this may have been beneficial because participants were
able to bring this experience into the interview and reflect from their perspective as
academics. However, it does mean this study may not reflect the views of those with less
research experience. It is common that those with higher educational qualifications are more
likely to be participants in research (Henrich, Heine and Norenzayan, 2010). I would argue,
however, the perspective of NBA researchers is still novel and the prior experience of
research by participants in this study does not overshadow their insights.
It is also interesting to question why almost all of those who responded to the request
to take part in the study had been involved in research themselves. It may be that others felt
research was not relevant to their lives or they may have been intimidated by a topic they felt
they did not know much about. It would, therefore, be interesting for similar research to
attempt to capture the views of those who think research is not so relevant to them to see how
views and experiences differ.
A further limitation is the impact of my development as a researcher throughout the
study. Before I started this project, I had no research experience as an interviewer. Although I
conducted two pilot interviews, my skills still developed across the course of the project.
Some later interviews may have been higher in quality than earlier ones. They were also less
structured as I gained confidence to follow my intuition and the participants’ lead. IPA was
54
also new to me. As described in the Methodology section, I trialed out different modes of
conducting the analysis until I found a system that worked. Although this process may be
seen as a limitation of the current study, I would argue that my reflexion and transparency are
beneficial and that skill development across a project is expected by researchers at any level.
These are also skills that I have developed and will be able to apply in any future studies.
Implications
The findings from this study have implications for research. The finding from the
ranking statements task that participants had a range of different views suggests research
should focus on many different issues. This broad scope is reflected in the priorities for
research produced by Autistica (2017) which looked at questions posed by the autism
community (23% autistic people, 52% family members and 25% professionals). The top ten
include mental health, education, social care, supportive environments, support for family
members, improving diagnosis for autistic adults and understanding autistic sensory
experiences. These are similar to those produced for the ranking statements task. However,
Autistica’s agenda does not include a focus on identity and experiences as a member of
multiple minority groups, embracing autistic differences or physical health needs, all of
which were ranked highly by some participants in this study. It is important, therefore, to
consider broader funding agendas, particularly those that meet the needs of marginalised
groups, such as nonbinary people, within the autistic community.
Another finding was that participants valued and wanted more future research to be
community-led and participatory. This has echoed repeatedly by autistic academics (Milton,
Mills and Pellicano, 2014; Chown et al., 2017; den Houting et al., 2021). It has implications
for funding more research with this focus but also in equipping researchers with the skills to
utilise participatory methods effectively, which is not so widely established. Participants’
55
focus on representation of different groups in research is also important here, as it is crucial
participatory research represents views from the whole community. This speaks to the
underlying message of participatory research in representing the views of a community,
which is not possible if certain groups are not included in this work.
A final implication for research is the focus on Education. Participants spoke about
the role of education in reversing some of the injustices they and others in the community
face. This has implications for future work in schools as it should be considered how
programmes that teach about various aspects of diversity (cultural, gender, disability,
neurodiversity etc.) may be combined to produce comprehensive teaching materials that offer
a balanced curriculum. It should also be considered how this may be achieved for different
age groups and different audiences (e.g. in schools, with parents, with professionals), as it
was emphasised in this study how these lessons need to be taught more broadly to enact
systemic change.
Conclusion
To my knowledge, this project has been the first to look at the research interests of
NBA people. It, therefore, extends work that has looked at what research should focus on in
other areas of autism research. Although participants’ views differed in some areas,
expressing their individual viewpoints, there were also areas where they converged.
Participants were concerned current research involving autistic nonbinary people tends to
focus on negative experiences, contributing to a pathologising narrative and not representing
the diversity of the community. They also valued research that could make a critical
difference to the lives of individuals. Participants felt future research should be led by the
communities it involves and had ideas about the role of education in implementing change
and better meeting the needs of NBA people.
56
To my knowledge, this project was also the first to look at how views related to
participants’ lived experiences. Participants made connections between their views on
research and experiences in their own lives. This represented a journey comprising of
foundational experiences growing up, experiences of conflict throughout their lives and a
new chapter of self-discovery and empowerment in their present day. Participants also shaped
and were shaped by others views, which was demonstrated in their tendency to draw on
others experiences to frame their own and by taking on active roles in their communities. In
its nature, this project is future-directed and concerned with influencing future research. The
greatest contributions will, therefore, be in its future applications, including in informing my
own PhD research
57
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