The lived experience of gender dysphoria in autistic adults: An interpretative phenomenological analysis

Abstract

Autistic people are more likely to be transgender, which means having a gender identity different to one’s sex assigned at birth. Some transgender people experience distress about this incongruence or gender dysphoria. Few studies have aimed to understand the inner experiences of this group. In this study, we used Interpretive Phenomenological Analysis to understand the lived experience of gender dysphoria. Twenty-one autistic adults were interviewed about their experience of incongruence between their gender identity and sex assigned at birth, and any associated distress. The interviews were transcribed and analysed using Interpretive Phenomenological Analysis. Participants described significant distress because their bodies did not match their gender identities, their need to understand their identities more broadly and to manage complex intersecting needs. Participants experienced distress due to living in a world which is not always accepting of gender- and neuro-diversity. Participants described barriers in accessing healthcare for their gender needs. Some participants felt being autistic had facilitated their understanding of their gender identity. Other participants described challenges such as a tension between their need to undergo a physical gender transition versus a need for sameness and routine. In conclusion, there can be both positive experiences and additional challenges for autistic transgender people.

Lay Abstract
Autistic people are more likely to be transgender, which means having a gender identity different to one’s sex assigned at birth. Some transgender people experience distress about their gender and sex assigned at birth not matching which is called gender dysphoria. Research has focused on finding out why autistic people are more likely to have gender dysphoria, and less on what the experience of gender dysphoria is like for autistic people. We interviewed 21 autistic adults about their experience of incongruence between their gender identity and sex assigned at birth, and any associated distress. We carefully read the transcripts of the interviews, focusing on how participants understood their experiences. We found a range of themes from the interviews. Participants were distressed because their bodies did not match their gender identities. Participants told us they had to work hard to understand themselves and who they were, and to manage having multiple different needs such as mental health needs. It was upsetting for participants to experience discrimination because of being autistic and/or transgender. Some participants said it was more difficult to get transgender healthcare as an autistic person. Some participants thought being autistic had helped them understand their gender identity more than non-autistic people. Other participants found it was challenging to be both autistic and transgender. For example, most participants wanted to change their bodies to match their gender identity, but some participants were nervous about making changes to themselves and their routine due to being autistic. We conclude that autism can in some ways be helpful and other ways contribute to challenges for transgender autistic people.

Full text

https://doi.org/10.1177/13623613211039113
Autism
2022, Vol. 26(4) 963 –974
© The Author(s) 2021
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DOI: 10.1177/13623613211039113
journals.sagepub.com/home/aut
The lived experience of gender dysphoria
in autistic adults: An interpretative
phenomenological analysis
Kate Cooper1, William Mandy2,
Catherine Butler1 and Ailsa Russell1
Abstract
Autistic people are more likely to be transgender, which means having a gender identity different to one’s sex assigned
at birth. Some transgender people experience distress about this incongruence or gender dysphoria. Few studies have
aimed to understand the inner experiences of this group. In this study, we used Interpretive Phenomenological Analysis
to understand the lived experience of gender dysphoria. Twenty-one autistic adults were interviewed about their
experience of incongruence between their gender identity and sex assigned at birth, and any associated distress. The
interviews were transcribed and analysed using Interpretive Phenomenological Analysis. Participants described significant
distress because their bodies did not match their gender identities, their need to understand their identities more
broadly and to manage complex intersecting needs. Participants experienced distress due to living in a world which is
not always accepting of gender- and neuro-diversity. Participants described barriers in accessing healthcare for their
gender needs. Some participants felt being autistic had facilitated their understanding of their gender identity. Other
participants described challenges such as a tension between their need to undergo a physical gender transition versus
a need for sameness and routine. In conclusion, there can be both positive experiences and additional challenges for
autistic transgender people.
Lay abstract
Autistic people are more likely to be transgender, which means having a gender identity different to one’s sex assigned
at birth. Some transgender people experience distress about their gender and sex assigned at birth not matching
which is called gender dysphoria. Research has focused on finding out why autistic people are more likely to have
gender dysphoria, and less on what the experience of gender dysphoria is like for autistic people. We interviewed 21
autistic adults about their experience of incongruence between their gender identity and sex assigned at birth, and any
associated distress. We carefully read the transcripts of the interviews, focusing on how participants understood their
experiences. We found a range of themes from the interviews. Participants were distressed because their bodies did
not match their gender identities. Participants told us they had to work hard to understand themselves and who they
were, and to manage having multiple different needs such as mental health needs. It was upsetting for participants to
experience discrimination because of being autistic and/or transgender. Some participants said it was more difficult to
get transgender healthcare as an autistic person. Some participants thought being autistic had helped them understand
their gender identity more than non-autistic people. Other participants found it was challenging to be both autistic and
transgender. For example, most participants wanted to change their bodies to match their gender identity, but some
participants were nervous about making changes to themselves and their routine due to being autistic. We conclude that
autism can in some ways be helpful and other ways contribute to challenges for transgender autistic people.
Keywords
autism spectrum disorders, gender diversity, gender dysphoria, transgender healthcare, transgender identities
1University of Bath, UK
2University College London, UK
Corresponding author:
Kate Cooper, Centre for Applied Autism Research, Department of
Psychology, University of Bath, Claverton Down, Bath BA2 7AY, UK.
Email: k.cooper@bath.ac.uk
1039113AUT0010.1177/13623613211039113AutismCooper et al.
research-article2021
Original Article

964 Autism 26(4)
Autistic people are more likely to be transgender, which
means having a gender identity different to one’s sex
assigned at birth (Van der Miesen et al., 2018; Walsh et al.,
2018). Warrier et al. (2020) found that that transgender
adults were 3.03–6.36 times more likely to be autistic than
cisgender people (i.e. people with congruence between
their gender identity and sex assigned at birth). Other
research has explored the relationship between autism and
transgender identities, ranging from case-studies of
transgender autistic individuals, to measuring autism traits
and diagnoses of Autism Spectrum Disorder in transgender
people and individuals accessing gender clinics, and rates of
transgender identities in autistic individuals across the lifes-
pan (for reviews, see Glidden et al., 2016; Øien et al., 2018;
Thrower et al., 2020; Van der Miesen et al., 2016). This
association may not be unique to autism; systematic reviews
and large-scale studies have indicated that attention deficit
hyperactivity disorder (ADHD) may also be more common
in transgender individuals compared to cisgender individu-
als (Thrower et al., 2020; Warrier et al., 2020).
Some transgender individuals experience gender dyspho-
ria, which is defined in the Diagnostic and Statistical Manual
of Mental Disorders (5th ed.; DSM-5; American Psychiatric
Association, 2013) as a significant incongruence between an
individual’s gender identity and assigned gender leading to
distress or impairment. The International Statistical
Classification of Diseases and Related Health Problems–
Eleventh Edition (ICD-11; World Health Organization,
2019) diagnostic criteria have been amended to focus less on
distress, broadening the criteria and labelling this as gender
incongruence. The criteria for gender incongruence involve a
marked and persistent mismatch between an individual’s
assigned sex and gender, frequently leading to a desire to
transition gender. Nonetheless, in the United Kingdom, and
in line with the Worldwide Professional Association for
Transgender Health standards of care (World Professional
Association for Transgender Health [WPATH], 2012), an
assessment of gender dysphoria must be made before physi-
cal interventions such as gender affirming hormones and sur-
gery can be accessed, and so the experience of distress linked
to this incongruence is key to accessing healthcare. Therefore,
in this study, we focus on experiences of dysphoria linked to
gender incongruence. In the United Kingdom, individuals
experiencing gender dysphoria can access National Health
Service (NHS) gender clinics for psychological support as
well as physical treatments including hormone treatment and
gender confirmation surgery (WPATH, 2012). A systematic
review found evidence that in adults with gender dysphoria,
undergoing physical interventions improves psychological
well-being and quality of life, but concluded that higher
quality evidence is needed in this field (Nobili et al., 2018).
Furthermore, the rates of autism of participants in these stud-
ies are not known, and so research investigating the well-
being of autistic people following physical gender transition
is needed.
A recent systematic review and meta-synthesis indi-
cated that a wider range of experiences than those described
in DSM-5 gender dysphoria criteria also contribute to dis-
tress in transgender adults (Cooper et al., 2020). These
included being socially isolated due to being transgender,
being misgendered, and cognitive and emotional processes
linked to experiences of transphobia and harassment.
These experiences can be understood in the context of gen-
der minority stress theory (Meyer, 2015; Testa et al., 2015),
which refers to experiences of stigma and discrimination
due to being transgender which contribute to mental health
difficulties (e.g. McLemore, 2018). Given that autistic
people also experience minority stress due to their autism
identity (Botha & Frost, 2020), it is likely that the experi-
ences of being autistic and being transgender intersect in
clinically meaningful ways.
It is crucial to better understand the experience of gender
dysphoria in autistic adults, in order to support this poten-
tially vulnerable group. Mental health problems are more
common in autistic people (Lai et al., 2019) and in transgen-
der individuals (Dhejne et al., 2016). There is emerging evi-
dence that being both transgender and autistic is associated
with yet higher rates of mental health problems (George &
Stokes, 2018; Murphy et al., 2020; Strang et al., 2021;
Strauss et al., 2021). While there have been numerous stud-
ies investigating the increased prevalence of transgender
identities in autistic people (Glidden et al., 2016), there have
been fewer attempts to understand the inner experiences of
this group. Strang, van der Miesen, et al. (2020) call for a
move towards research focusing on the lived experience of
gender identity in autistic people, and towards an under-
standing of the intersection of autism and transgender
identities.
To date there have been two qualitative studies pub-
lished on the lived experience of gender diversity and
autism. There have been a further two community-based
participatory design papers describing the development of
a clinical intervention for young autistic people who are
transgender (Strang, Klomp, et al., 2020; Strang, Knauss,
et al., 2020). Coleman-Smith et al. (2020) investigated the
lived experience of gender dysphoria in 10 autistic adults
in the United Kingdom. This study used Grounded Theory
and found one overarching theme, named ‘conflict versus
congruence’. This theme described the participants’ expe-
rience of conflict between their gender identities and bod-
ies, and also to inter- and intra-personal conflict which was
linked to being autistic as well as transgender. Some par-
ticipants spoke of autism allowing the freedom of expres-
sion to embrace their gender identity while others saw
autism as a barrier to accessing gender transition (Coleman-
Smith et al., 2020). This is in line with research showing
that autistic people experience barriers to accessing health-
care more broadly (Mason et al., 2019).
A qualitative study which used framework analysis with
22 transgender autistic youth in the United States found that

Cooper et al. 965
participants reported a strong need to live in their affirmed
gender. Participants emphasised that they were sure their gen-
der identity would persist, and that they experienced signifi-
cant gender dysphoria, but said that they did not feel the need
to conform to gender stereotypes (Strang et al., 2018).
Participants felt that being both gender and neurodiverse
brought challenges, and that their gender identity had been
questioned by others due to their autism. These two important
studies demonstrate that autism may affect the phenomenol-
ogy of gender dysphoria and impact access to gender transi-
tion services. It is important to build on this research to
provide an evidence base informing healthcare services pro-
vided to this group. To achieve this, researchers need to
develop a nuanced understanding of how the experiences of
being autistic and experiencing gender dysphoria influence
and interact with each other. In this study, we used
Interpretative Phenomenological Analysis (IPA; Smith et al.,
2009) and aimed to answer the question: what is the phenom-
enology of gender dysphoria in transgender autistic adults?
Method
Methodological approach
IPA is a qualitative research method which focuses on a spe-
cific phenomenon, such as gender dysphoria, and aims to
distil the essence of this experience. IPA emphasises the par-
ticular, individual lived experiences of participants, and
focuses on how each individual participant understands and
makes sense of their experiences of a particular phenome-
non (Smith et al., 2009). This approach acknowledges that
the researcher plays an active role in forming an understand-
ing of the participants’ experiences, that is, the researcher
will bring their own experiences and expertise to the analy-
sis, and this must be reflected upon by keeping a reflexive
attitude and maintaining a keen awareness of the role any
researcher biases and preconceptions within the analytic
process. IPA has been identified as an important tool in
autism research due to its focus on the lived experience and
meaning to autistic individuals (Howard et al., 2019;
MacLeod, 2019), and in this study, we aimed to stay close to
the meaning-making of the individual in order to offer
insights into participant experiences, while remaining aware
of our identities as non-autistic researchers and clinicians.
IPA achieves this through careful analysis of themes in each
individual transcript, before moving on to develop themes
in the next transcript. This process continues until each indi-
vidual set of themes has been collated, and only at this point
are themes developed across the data set. The ‘analysis’ sec-
tion presents further details of the analytic process.
Participants
We recruited 21 adults who had a clinical diagnosis of
Autism Spectrum Disorder. We verified participant autism
diagnoses by viewing individual diagnostic reports con-
firming receipt of an autism diagnosis from a qualified
health professional. All participants identified as transgen-
der and/or non-binary and had experienced distress in rela-
tion to the incongruence between their gender identity and
sex assigned at birth, such that they had discussed their
gender experiences with a health professional. Participants
therefore may or may not have met DSM-5 criteria for
Gender Dysphoria. This was to ensure that a range of
autistic experiences of distress linked to gender incongru-
ence were included. The sample was relatively homogene-
ous, in that all participants had an autism diagnosis and
experience of gender dysphoria. A larger number of par-
ticipants were invited to take part to ensure a range of gen-
der identities, ages, stages of transition and geographical
location in participants, following advice from the patient
and public involvement group who were all autistic
transgender adults.
Participants were recruited from NHS adult autism ser-
vices (n = 10), NHS gender clinics (n = 3) and through
community groups (n = 8) including transgender and
autism support groups. Some of the community group
sample invited other group members, otherwise known as
snowball sampling. All participants who identified as male
were assigned female at birth (AFAB), all participants who
identified as female were assigned male at birth (AMAB)
and of those who identified as non-binary/genderqueer;
five were AFAB and one was AMAB. Of those with com-
plete data, seven (44%) requested support for gender dys-
phoria and then received an autism diagnosis, and nine
(56%) had an autism diagnosis before requesting support
for gender dysphoria.1 Table 1 presents a summary of par-
ticipant characteristics.
Procedure
We received ethical approval for the study from the Health
Research Authority (19/NE/0265). In the NHS context,
clinicians within each recruitment site spoke to potentially
eligible participants about the research project during rou-
tine clinical appointments. This clinician assessed partici-
pant eligibility for the study, including checking for a
confirmed autism diagnosis and for experiences of gender
dysphoria, before gaining consent from the potential par-
ticipant to pass on their contact details to the research
team. Participants who were recruited via other members
of community groups made direct contact with the study
team. The research team assessed community group par-
ticipants for their eligibility to participate, including con-
firmation of autism diagnosis by clinic letter from a
qualified medical professional, before inviting eligible
participants to take part. Participants were invited to meet
with a researcher either in-person or online to give fully
informed consent. After consenting, participants com-
pleted a demographic questionnaire which collected

966 Autism 26(4)
information about participant age, gender identity, current
sexual orientation (using pre-specified options as well as
the option for open responses) and journey through the
health service for support around both autism and gender
dysphoria (see Table 1).
Next, participants were interviewed by the first author
about their experience of distress linked to gender incongru-
ence and of seeking help for this in the NHS. Interviews
took place between December 2019 and October 2020 and
lasted an average of 66 min (range = 39–104 min). The
topic guide covered the following areas: earliest experiences
of gender dysphoria; experience of being autistic and having
gender dysphoria; interaction of gender dysphoria, autism
and mental health; seeking help for gender dysphoria and
autism adaptations in services. In line with the IPA method-
ology, open questions were used as much as possible.
However, some participants needed autism adaptations to
be able to fully respond to questions, including writing
down responses (n = 3), having someone else in the room to
support them during the interview (n = 1), and for all par-
ticipants, the interviewer used a flexible and adapted
interview style including closed prompt questions. All of the
interviews resulted in data that were useful to answer the
research question, although some interviews provided a
richer data set than others. Some participants were able and
willing to express their lived experience of gender dyspho-
ria in detail, readily accessing their experiences and provid-
ing rich descriptions of these, while others took more
prompting and were less able to describe their feelings;
however, this formed part of the analysis in itself.
Interviews were audio recorded using a digital recorder
and the audio recording was sent to a professional tran-
scription company and transcribed using an intelligent ver-
batim method. Participants were reimbursed with a £25
shopping voucher and sent a debrief form following
participation.
Analysis
Analysis followed the procedure outlined by Smith et al.
(2009), with in-depth noting or coding of each individual
transcript focused on capturing descriptive, linguistic and
conceptual aspects of the data, followed by the develop-
ment of themes capturing the most important aspects of the
individual’s experience of gender dysphoria. Themes were
developed using processes of grouping together related
themes, themes with oppositional relationships, those
which shed light on contextual elements and themes which
shared a similar function within the transcript. Once each
transcript had been analysed in this way, themes were
developed for the whole data set using similar strategies.
Due to the relatively large sample size for an IPA study, the
number of participants for whom each theme was relevant
was taken into account (Smith et al., 2009). Where more
than half of the participants (n ⩾ 10) had experienced a
theme, it was categorised as recurrent and considered for
the final analysis. Quotes were extracted and presented in
the results when they distilled the essence of a theme, and
participant numbers are presented with each quote.
To ensure the credibility of the analysis, the authors dis-
cussed their positionality and prior assumptions about the
topic before and throughout data collection. The first
author kept a reflexive diary during the research process,
as well as attending an IPA peer supervision group with
other IPA researchers. The analysis was critically evalu-
ated in both the IPA group, in supervision and with the
patient and public involvement group to ensure that the
analysis was credible and grounded in the transcripts and
participants’ reported experience.
Community involvement
A group of transgender autistic adults (n = 6) were con-
sulted and formed a patient and public involvement group
for the research project. These individuals were identified
through an NHS run peer support group for autistic
Table 1. Participant demographic characteristics.
Gender n%
Male 7 33
Female 8 38
Non-binary/genderqueer 6 29
Sex assigned at birth
Male 9 43
Female 12 57
Sexuality
Lesbian or gay 10 47
Bisexual 3 14
Asexual 4 19
Other 4 19
Ethnicity
White British 20 95
Mixed 1 5
Gender transition undertaken n
Social transition only* 4 19
On gender identity clinic waitlist 4 19
Assessment at Gender Identity Clinic 1 5
Hormones prescribed 4 19
Surgery – ongoing 6 29
Physical transition complete 2 10
Mean SD Range
Age 29.1 11.5 18–51
Age realised trans 10.2 5.1 0–19
Age when sought help from a
professional for gender dysphoria
22.2 8.0 16–47
Age of autism diagnosis 22.5 13.6 3–51
SD: standard deviation. *Three non-binary participants hoped to
access physical interventions, and one trans man was planning his initial
primary care consultation for gender dysphoria.

Cooper et al. 967
transgender adults, and invited to contribute to the research
by giving their opinions on the suggested research ques-
tion and methods. As well as helping to develop the
research question, they also helped to ensure study materi-
als were adapted for autistic adults, reviewing the informa-
tion sheet and topic guide for the interview. Finally, they
reviewed the final analysis and theme names, and com-
mented on how the theme names and descriptions could be
made accessible to the autistic community.
Results
We present here the themes that were endorsed by at least
half of participants (see Table 2). In the last paragraph of the
results, we present themes which were endorsed by fewer
participants but which are relevant to the research question.
Making sense of distress and finding my
identities
The first superordinate theme describes the discomfort and
distress that all participants experienced, and had three sub-
themes. This discomfort was experienced in participants’
bodies and in their sense of self, linked to their multiple
identities and life experiences.
Experiencing and describing body distress. This subordinate
theme referred to the distress participants felt because of
having a body which did not match their gender identity,
and all participants described this distress to some extent,
although many struggled to clearly articulate it.
Participants spoke of a wide range of negative emotional
responses to their bodies including depression, anxiety, anger
and disgust, with some participants referencing dissociation
from their bodies. Participant 6 described this experience:
I was resigned to the fact that I’m stuck being a girl and it was
quite depressing really . . . I felt fairly numb, yes, numb and
empty, and just really not connected with my body at all. And
then I think I used to feel physically awkward an awful lot of
the time and I was always really tense. I could never relax in
my body and that in itself would bring its own discomfort.
A non-binary participant described experiencing ‘an
estrangement’ from their body; later describing how,
I still feel at my most comfortable and at my best when I have
broader shoulders, when I have more body muscle . . . where
there is more of an androgynous, strong shape to me. I still
have to go to some effort to hide if I want other people to treat
me a certain way, which is tedious, but I am more comfortable
in my skin. (15)
Table 2. Themes and quotes describing the autistic experience of gender dysphoria.
Superordinate theme Subordinate theme Supporting quote Number of participants
included in theme
1. Making sense of
distress and finding my
identities
1. Experiencing and
describing body distress
19: ‘I am forever stuck in a body that I am not going
to like and there’s no way I can go back to how I was
before puberty’.
21
2. Making sense of who
I am
9: ‘My identity is something that I’ve had to figure out
and it was really difficult’.
17
3. Intersecting and
competing needs
1: ‘I’ve been told I was ill, I’ve been told I was
demon possessed, I’ve been assaulted twice, I’ve
been mocked, I’ve been given ECT . . . and it was all
unnecessary. So it’s like a real grief’.
16: ‘I had top surgery . . . even though it’s what I want
and it’s good change, it’s still change’.
19
2. Mismatch between
needs as an autistic
trans person and
society
1. Gender as social
behaviour
15: ‘I feel about gender roughly the same way that
you might feel about like a big dessert at the end of a
really good meal, in that the menu looks amazing and
you should all have some if you like, there’s so many
delicious options, they look amazing, but I am good, I
will just have a coffee, thank you very much’.
23: ‘It does hurt when someone calls me . . . or
perceives me as a man, I don’t like that at all’.
15
2. Struggle of being
different
2: ‘It’s only when you kind of get to secondary school
and like the social expectations changed and then I
really realised how different I was’.
17
3. Battle for support 18: ‘they [gender clinician] didn’t really address me
being autistic . . . it just felt a bit strange that they
didn’t notice it as part of my life I guess’.
6: ‘every service I’d ever had contact with had
misunderstood me, and there was actually a fear that
maybe the gender clinic will be the same’.
20

968 Autism 26(4)
Both quotes demonstrate the sense of distress in and
detachment from a body which does not align with the
individual’s identity. Some participants described puberty
as being particularly distressing as their body developed in
an unwanted way. For example, a trans male participant
described being surprised by puberty as his body devel-
oped in an unwanted direction: ‘I kind of almost grew up
like a boy, really, and then puberty happened and it was
very distressing, like almost in my brain I wasn’t expecting
it to happen’ (2).
For many participants, these experiences of embodied
distress were difficult to articulate verbally. For example,
participant 22 said ‘I may over-estimate or under-estimate’
gender dysphoria, and participant 2 stated ‘It’s just . . . it’s
hard to explain. It’s really hard to explain. I find it hard
identifying which emotion I’m feeling. Everything just
feels like stress – everything’. When asked to give a
description of dysphoria, participant 8 said ‘Sorry, I don’t
know many synonyms for it. Just that thing’. Some partici-
pants used concrete, behavioural markers when asked to
describe their experience of gender-related distress: ‘. . .
it’s quite unpleasant. There were situations where I was
going to cause harm to my family’ (23), while other par-
ticipants described their gender dysphoria in more abstract
terms: ‘I’m sort of nowhere. Sort of disappeared . . . I
don’t know. It makes me feel sad’ (5), showing both the
distress at not feeling connected to her body, and chal-
lenges in communicating this bodily experience.
Making sense of who I am. This subordinate theme described
the importance most participants placed on understanding
their identities, and the sense of unease when they did not
have this understanding. This lack of a clear sense of iden-
tity led to feelings of discomfort and frustration linked to
the person’s broader sense of self, going beyond the bodily
experiences of the first subordinate theme.
Most participants spent significant time trying to under-
stand themselves. This was not just centred on gender
identity, but also on autism identity: ‘I was only diagnosed
as autistic two years ago and that made me really re-evalu-
ate an awful lot of stuff because suddenly instead of being
awkward and difficult and not making sense it was actu-
ally this makes sense’ (16). Participant 13 felt a pressure to
find a gender label and wondered:
Am I female? Am I like, am I another thing? . . . I felt I had to
fully label myself and fully figure out why it was. I was really,
really low. It was like – it’s hard to explain, but it’s the lowest
I’ve ever felt.
Some participants described experiencing feelings of
discomfort that they needed an explanation for and realising
that they were both transgender and autistic was hugely
important in gaining such an understanding. For example,
participant 19 said ‘It’s been such a relief to accept that there
is something different about me and just try and do things in
different a way that works for me’. These realisations were
experienced as comforting and this allowed new strategies
to be implemented to alleviate distress, such as participant
17 who stopped masking autism after a diagnosis:
Then after having a [autism] diagnosis a lot more of my
experiences have come to light again and there’s things that I
do actually make me really uncomfortable or things that really
don’t suit me that I have edited to ignore a long time ago.
While some participants described the utility of labels
and diagnoses for understanding the self, a few used differ-
ent labels before settling on a transgender identity: ‘Yeah,
I tried, and then I went through a phase, “Well, if I can’t be
a boy, then I’ll just be a butch lesbian”’(2).
Intersecting and competing needs. This subordinate theme
described the multiple and overlapping difficulties that most
participants experienced which sometimes required com-
peting solutions. These complex and multifaceted experi-
ences of distress contributed to feelings of being
uncomfortable in oneself. Some participants described these
multiple needs as amplifying dysphoria, such as participant
17: ‘I think how intensely I process it [dysphoria] is autism
related’, others felt they were entangled and could not be
separated, while others conceptualised these multiple strug-
gles as separate to their gender dysphoria.
Many participants described multiple challenges that
they faced which caused significant psychological dis-
tress. These challenges included mental health needs, trau-
matic experiences and autism-specific difficulties such as
being overwhelmed by sensory experiences, and this con-
tributed to distress, such as for participant 6: ‘I was just
completely lost really . . . there was the gender stuff going
on, but there was an awful lot else going on as well . . . I
was really depressed, anxious, isolated, struggling mas-
sively socially and I had OCD’.
Many participants described a clash between their
autism and gender needs, causing additional distress.
Some participants described ‘sensory dysphoria’ (1),
which were experiences of distress in their bodies linked to
sensory experiences including wearing uncomfortable fab-
rics and shapes associated with girls’ clothes, and with the
sensory challenges of puberty including periods, such as
dealing with the smell of blood, and growing facial hair.
Many participants reported finding change stressful,
alongside a strong need to undertake a social and/or physi-
cal gender transition, and that this caused tension.
Participant 6 said ‘I think because of the fear of changes
happening – I really wanted to be in control as much as I
could and I asked to have [testosterone] gel instead of
injections because . . . I could just not apply it’. Some par-
ticipants expressed a desire for their transition to be pre-
cise and predictable, such as participant 16 who wished for

Cooper et al. 969
‘nice little tick boxes’ for transition and another participant
described the uncertainty of the transition process leading
to ‘repetitively kind of winding yourself more up’ (2).
Some participants felt a need to be certain about their
gender, and that reaching a sense of certainty about their
gender identity and expression brought a sense of relief.
Concrete thinking linked to autism made it harder for some
participants to understand their gender, such as a non-
binary participant 19 who described their previous thought
process ‘I hate trying to be a girl but I have to try and force
myself to be a man because there’s only two options’ and
another non-binary participant 20 who said ‘I don’t really
want a body at all because it would never be exactly in
between’. This need for gender to be ‘just so’ led to addi-
tional experiences of distress.
While the intersecting needs at times contributed to dis-
tress, other participants felt that autism had helped with
understanding their gender such as participant 22 who felt
that autistic people are ‘more in-tune with their gender’
because ‘we see the world differently’, referring to the idea
that being autistic allows one to step outside of societal
norms and follow one’s own path.
Mismatch between needs as an autistic trans
person and society
The next superordinate theme had three sub-themes: doing
gender, struggle of being different and battle for support.
This theme centred on participant experiences of living in
their bodies, gender identities and with their autism fea-
tures within the social world which is not always accepting
of social and gender differences. Most participants there-
fore had needs which were not easily met in society, need-
ing to come to understand themselves through others who
were not always accepting of their differences. It was
important that their gender identity and autism identity
was affirmed by others, and that they were able to undergo
a gender transition despite the barriers they experienced.
Gender as social behaviour. The first subordinate theme
centred on the participants’ experience of their gender in
the social world. Individuals often experienced their gen-
der identity through the eyes of others, which meant learn-
ing how other people thought about gender, considering
how their own experience fit with these gender norms, and
trying to ensure that their individual gender expression
would mean that others did not mischaracterise their gen-
der, that is, misgender them.
Some participants felt that gender was one of many
social expectations which did not make sense to them,
through being unaware of gender as a concept: ‘I just
didn’t notice that gender was a thing’ (18), or being con-
fused by it: ‘gender was just another one of those things
where it seemed like everybody else had a bunch of ideas
about how the world was meant to work, it didn’t really
seem to make a lot of sense to me’ (15). Participant 20
explained how they felt this linked to their autism identity:
‘Being autistic is like everybody else has got the rulebook
and you didn’t, so you can understand why gender would
come into it because that was in the rulebook you do not
get’. Other participants were aware of and felt comfortable
in their non-conformity: ‘I have never tried to fit in with
people, or very rarely. So whilst now my gender presenta-
tion is very stereotypically male, there are some things that
I do are intentionally more feminine, but I don’t care’ (12).
A number of participants stated their rejection of gender
norms, while many participants also felt a pull towards ste-
reotypical gender expression. For example, a trans woman
stated ‘basically more or less all my interests were very
feminine’ (8), showing an awareness that she conformed to
gender norms in her interests. Some participants felt
repelled by their assigned gender such as a trans woman
(23): ‘I find men real tiresome you know is the real answer
. . . I can’t relate to them at all’. Participants described
feeling oppressed by gender norms which did not apply to
them, such as participant 22 who felt ‘if they [other peo-
ple] try and force gender roles on me I’m not considering
them as a person’. Some participants noted feeling affected
by gender stereotypes linked to autism: ‘people who see
me as female may not necessarily pick up on my autistic
traits as much’ (3), referring to the way in which autistic
traits can be perceived as being stereotypically male.
Some participants described feeling a range of negative
emotions when misgendered: ‘It was quite traumatic I
think. Really painful and just really frustrating that they
weren’t seeing what I wanted’ (6). For some participants, it
could be difficult to work out what others thought about
their gender and reaching this understanding took much
reflection ‘I’d get very aware of how I imagined other peo-
ple were perceiving me, to the point where I’d almost lose
myself because I’m imagining being in their perceptive so
much’ (5).
Struggle of being different. This subordinate theme described
the challenges faced by autistic people living in a world
which is cisnormative, that is, the expectation that gender
identity aligns with sex assigned at birth, and where the dif-
ferences associated with autism and being transgender can
be perceived negatively. Participants struggled against this,
sometimes experiencing a desire to fit in to mitigate these
negative social experiences, which could be challenging
given their differences in gender and social expression.
Many participants described periods of their lives in
which they were ostracised and socially isolated due to
their identities, such as participant 3: ‘after I came out I was
temporarily homeless because of the situation with my
family not exactly accepting or being supportive’. Most
participants described experiences of being bullied, othered
and socially isolated. Some participants described having
difficulties in social situations both as a result of autism and

970 Autism 26(4)
their different gender expression, as described by partici-
pant 17: ‘I think that both of those things [gender and
autism] affected how I acted in school and how I felt . . . I
was very tense and very quiet which is not my nature’. A
number of participants described autism as being the main
cause of social difficulties: ‘being autistic, people were too
preoccupied with that to think about my gender so I never
really faced any problems regarding that’ (5).
Resulting from these negative experiences, some par-
ticipants referred to a sense of shame, such as participant
16: ‘You feel that you’re not very good at this, you’re kind
of failing as a person that you just don’t fit anywhere and
you just want to retreat’. Some participants spent signifi-
cant time worrying about how they were perceived by oth-
ers, such as participant 13: ‘it’s like the feeling that people
are watching me and judging my every move that I make’,
while some participants said that they did not worry what
others thought of them. Some participants described
attempts to blend in and conform to norms around gender
and social behaviour, such as participant 2:
Like trying to be what people wanted me to be, depending on
the situation, so I never felt like I could truly be myself around
anyone, really. I was just being what I had to be to get by. It’s
hard work.
Battle for support. This subordinate theme summarised the
struggle by almost all participants to be acknowledged in
their identities by people in positions of power, primarily
professionals in health, education and social care settings.
This theme also refers to most participants’ desire to com-
municate about gender and to undergo a transition, but that
features of autism could create barriers to this.
The positions of authority held by clinicians made their
affirmation of the person’s identity (as both trans and autis-
tic) hold meaning and power. Participant 10 said ‘the first
appointment I ever did go to was a complete disaster and I
don’t think the doctor even believed me. After that I didn’t
really go back for a long time’, demonstrating the power of a
clinician’s initial response to a request for support around
gender dysphoria, and that the clinician’s affirmation of this
participant’s experience was needed to continue to get sup-
port. Sometimes, interactions at a gender clinic, or with men-
tal health professionals, were described in terms of a battle to
get the support the individual wanted. Participant 6 described
arriving at general practitioner (GP) and gender clinic
appointments ‘armed’ (6) with the necessary information to
ensure they got a referral or the support they requested. Many
participants spoke of significant barriers to accessing a gen-
der clinic due to their autism. Participant 20 had been unable
to access a gender clinic due to dependence on unsupportive
family members to attend medical appointments: ‘I don’t see
any professional on my own, so getting a referral would be
near impossible’.
Where participants did access a gender clinic, they did
not always feel that their autism was considered,
and participant 3 felt she ‘had to appear as neurotypical as
possible’ to gender clinicians. Others felt that adaptations
were made: ‘once I had a set clinician that I saw every time,
it got a lot better’ (2). Many participants spoke about com-
munication with professionals being challenging, and par-
ticipant 18 said of their gender clinic assessment: ‘a lot of
their questions were really open-ended and I never really
seemed to understand what they were actually asking’.
Participant 7 experienced helpful communication adapta-
tions: ‘giving us, I wouldn’t say a prompt but did you feel
like this, or did you feel this?’. Participant 16 described dif-
ficulties with the uncertainty of processes around attending
gender clinics:
It was very difficult because there’s no set rules especially
with transitioning there’s no kind of checklist well you do this
and then you do this . . . It would be far easier if there was
nice little tick boxes and a list with a timescale.
Participant 2 struggled with the physical environment at
the gender clinic:
they had these awful, bright lights that buzz, and then you’re
in the room with the clinician and they’ve got their computer
on so that’s humming away, and then you’re got the clock
ticking and then the temperature’s always way, way too hot
and it’s just . . . bombard you with all the sensory stuff.
Additional themes
Themes which were endorsed by less than half the partici-
pants, but were of relevance to the research question,
included that five participants described their vulnerability to
abuse by others, with two specifically linking this vulnerabil-
ity to being both transgender and autistic. For example, par-
ticipant 1 described how before making any social transition,
he thought of himself as a man, and did not consider that
others would not see him that way, leaving him vulnerable to
abuse: ‘this guy attacked me and I was in a very vulnerable
place ‘cause, again, I had no idea, I just saw myself as male’.
Two participants felt that being autistic meant that they spent
more time researching gender identity, with participant 12
worrying that gender was a special interest, before conclud-
ing that it was not: ‘At first, I was slightly concerned that,
“Oh, what if gender is just a new special interest?” But it
went on for so long, way beyond the researching and stuff
that I was, “No, this is . . .”’. Two non-binary participants
felt that autism was a more central identity than gender: ‘I
grew up autistic and that, actually, is the prevailing narrative
of my life’. (15)
Discussion
In this IPA study of the experience of gender dysphoria,
autistic participants described their experience of significant
distress due to their gender identities not matching their

Cooper et al. 971
bodies and struggle to articulate this experience, a need to
understand their identities more broadly, and manage com-
plex and intersecting needs. For some individuals, gender-
related distress was increased by being autistic, with some
participants feeling autism increased the intensity of dys-
phoria, while others described how features of autism
allowed more freedom of gender expression. Participants
faced difficulties in the social aspects of gender expression
and societal norms around gender identity, experienced dis-
tress when not treated as their gender by others and due to
being autistic and living in a world which is not always
accepting of gender- and neuro-diversity. Participants expe-
rienced barriers in accessing healthcare for their gender
needs.
All participants experienced distress due to a mismatch
between their gender identity and sex assigned at birth and
their bodies, as identified in previous qualitative work with
autistic transgender individuals (Coleman-Smith et al.,
2020; Strang et al., 2018; Strang, Klomp, et al., 2020). The
autistic people interviewed in this study generally experi-
enced negative emotions, including depression and anger,
which were related to gender dysphoria and similar to the
emotions reported by the broader community of those who
experience gender dysphoria (Cooper et al., 2020). Many
participants struggled to put these complex feelings into
words, and it may be that the social communication differ-
ences characteristic of autism (DSM-5; American
Psychiatric Association, 2013), and higher rates of alex-
ithymia (Kinnaird et al., 2019), increased the likelihood
that their experiences were misinterpreted by clinicians.
This may have led to some of the negative consultations
with healthcare professionals described in the ‘battle for
support’ theme.
Many of the participants in this study spent significant
time and energy trying to understand their identities, a
finding which aligns with qualitative research exploring
the lived experience of autistic individuals (DePape &
Lindsay, 2016). For participants in this study, uncertainty
about identity was often linked to gender, but also extended
to sense of self more broadly, and for many, there was a
need to make sense of their identity as an autistic person.
For some individuals, gender and autism identities were
seen as essentialist, that is, a fixed internal trait to be dis-
covered, whereas for others, these identities were seen as
socially constructed, that is, malleable traits influenced by
the social environment, mapping onto debates in the scien-
tific literature (Walsh & Einstein, 2020). Whichever stand-
point taken by individual participants, these findings
suggest that some autistic people with gender dysphoria
have longer and more complex journeys to come to under-
stand their sense of self and identity, beyond gender iden-
tity alone.
The experience of distress due to a mismatch between
assigned and affirmed gender was concurrent with a range
of intersecting and competing needs. Transgender
individuals are known to face high levels of discrimination
and social isolation (Meyer, 2015). The participants inter-
viewed in this study faced a wide range of additional
stressors. These included individual stressors such as a
conflict between autism and gender needs, other mental
health needs and contextual stressors such as experiences
of abuse and trauma, which contributed to increased dis-
tress and discomfort in the self, in line with previous stud-
ies (Coleman-Smith et al., 2020; Strang, Knauss, et al.,
2020). Some individuals said that experiencing multiple
stressors served to exacerbate their gender dysphoria,
while others saw these additional stressors as being sepa-
rate to the intensity of their gender dysphoria. The findings
from this study suggest that autistic people may be more
likely to have complex and multiple sources of distress
which in some cases increased the intensity of their exist-
ing gender dysphoria.
We identified some aspects of gender dysphoria which
interacted with autism. Autism was described as having a
positive effect on the understanding of gender for some
individuals, with being autistic facilitating awareness of
gender identity. This is consistent with ideas of autistic
people being resistant to social conditioning regarding
gender (Walsh et al., 2018) and ‘gender defiance’ in autis-
tic people (Bejerot & Erikson, 2014). There were also
descriptions of increased challenges at the intersection of
autism and transgender identity, such as distress due to
competing needs for routine versus undergoing a gender
transition. Autistic people often have a preference for cer-
tainty, and in this study, some participants were distressed
when they were uncertain about their identity. This fits
with previous research which found confusion was a part
of the experience of gender dysphoria in the general
transgender population (Bailey et al., 2014). Finally, sen-
sory sensitivities characteristic of autism contributed to
increased gender dysphoria, for example, trans men strug-
gled with the sensory aspect of having periods alongside
the feeling that their bodies did not fit their gender
identities.
The gender as social behaviour theme highlighted that
gender was expressed through and recognised by others as
social behaviour and this could contribute to gender dys-
phoria for the autistic participants. The social differences
characteristic of autism affected some participants’ under-
standing of how other people interpreted their gender
expression. For some participants, less intuitive under-
standing of social conventions led to not identifying with
gender norms; this was freeing for some, while others felt
frustration when others expected them to conform to gen-
der stereotypes. This fits with qualitative research with
autistic women that found participants did not feel com-
pelled to conform to gender norms (Kourti & MacLeod,
2019). The need expressed by participants to be seen as
their gender identity by others clearly maps onto themes
from previous studies with the broader transgender

972 Autism 26(4)
population of experiencing distress due to being misgen-
dered (McLemore, 2018).
The struggle of being different theme highlighted that
many participants face minority stress due to not matching
societal expectations because of both their autism and gender
identities (Meyer, 2015; Botha & Frost, 2020). Participants
were bullied and experienced adversity due to these differ-
ences. This suggests that autistic transgender individuals can
face yet more social adversity than non-autistic transgender
people. Also within this theme were feelings of shame about
one’s identity, likely linked to internalised stigma about their
identities through these negative social experiences (Botha
& Frost, 2020; Meyer, 2015).
The final theme focused on the ways in which partici-
pants advocated for themselves and managed to access
healthcare to meet their varied needs despite additional bar-
riers. Many participants felt let down by health services.
Participants wanted their autism and gender identities to be
acknowledged by health providers, without these becoming
barriers to autism, mental health or gender care. Participants
identified a range of autism adaptations which would
improve their experience of healthcare. These ranged from
differences in practicalities about organising appointments,
changes to the clinic environment and changes in clinician
communication. These adaptations are similar to those rec-
ommended for psychological therapy with autistic people
(Cooper et al., 2018; NICE, 2012). The recommended adap-
tations are in line with recent findings that autistic transgen-
der youth experience more executive functioning related
barriers to accessing gender healthcare as compared to non-
autistic transgender young people (Strang et al., 2021), and
our qualitative findings suggest these difficulties are also
experienced by autistic transgender adults.
A strength of this study was the focus on the lived experi-
ence of a group of participants who are frequently marginal-
ised due to their identities as autistic and transgender (Meyer,
2015; Botha & Frost, 2020). We were able to recruit a range
of participants from healthcare and community settings, with
a range of gender journeys and stages of physical gender
transition. We ensured that the analysis stayed close to the
meaning of gender dysphoria to participants, emphasising
their individual experiences. We carefully sampled adults
who had a clinical autism diagnosis but who had broader
experiences of distress around gender; this was a strength as
it is relevant to many healthcare settings following WPATH
(2012) standards of care, including in the United Kingdom,
where a diagnosis of gender dysphoria is needed to access
gender affirmation interventions, but definitions of gender-
related diagnoses and services are rapidly changing. A limi-
tation was the larger sample size; while there are published
IPA studies that include similar participant numbers (e.g.
Smith et al., 2017), this meant that necessarily the analysis
had to move on more quickly from the individual analysis of
each case to analysing themes across all cases, as recom-
mended by Smith et al. (2009) for IPA studies with larger
sample sizes. Future research should further investigate the
inner experiences of transgender autistic people, with less
focus on gender dysphoria, encapsulating a range of gender
journeys and experiences, outside of diagnostic criteria.
Moreover, research with a focus on the development of a
sense of gender identity and both gender conforming and
non-conforming behaviours in autistic children and young
people is needed to understand gender identity development
more broadly in this population.
In this study, we identified core features of gender dys-
phoria which were experienced by autistic participants, such
as distress due to a mismatch between assigned and affirmed
gender, and when the individual was misgendered. There
were also features of gender dysphoria which interacted
with autism, such as a tension between a need for routine
and a need to make a gender transition, and a sense of being
less constrained by gender norms than non-autistic people
may be. Participants needed to make sense of themselves in
the context of being autistic and having negative social
experiences, as well as to make sense of their gender iden-
tity. Discussing gender-related questions with professionals
was challenging for some participants, and some did not feel
understood or supported. Clinicians working with this group
should be aware of the differences in the autistic experience
of gender dysphoria and make adaptations to their practice
so that this group can access appropriate healthcare and
support.
Acknowledgements
The authors thank the Spectrum Support Group for helping to
develop the research question and methods, and to all the people
who took part in the interviews.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship and/or publication of this
article.
Funding
The author(s) disclosed receipt of the following financial support
for the research, authorship and/or publication of this article:
Kate Cooper is funded by a National Institute for Health Research
Clinical Doctoral Research Fellowship for this research project
(ICA-CDRF-2018-04-ST2-047).
ORCID iDs
Kate Cooper https://orcid.org/0000-0002-8216-5567
William Mandy https://orcid.org/0000-0002-3564-5808
Ailsa Russell https://orcid.org/0000-0002-8443-9381
Note
1. Five participants were not able to remember either their age
of autism diagnosis or of seeking support for gender dys-
phoria leading to the missing data.

Cooper et al. 973
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