Phenomenology of Gender Dysphoria in Autism

For this Papers Podcast Dr. Kate Cooper, lecturer in clinical psychology University of Bath, talks about her paper ‘Phenomenology of gender dysphoria in autism: a multiperspective qualitative analysis’ doi.org/10.1111/jcpp.13691, recently published in The Journal of Child Psychology and Psychiatry.

There is an overview of the paper, methodology, key findings, and implications for practice.

Discussion points include;

• What challenges might a person with autism face, as it relates to gender dysphoria, over and above a neurotypical young person with gender dysphoria.
• The communication difficulties between clinicians and autistic service users for gender dysphoria
• What clinicians can do differently to improve this
• What other autism adaptations are recommended for clinical services
• The significant difference in opinions that clinicians, parents, and autistic young people had and elaborates on the implications of the difference in opinions between these groups
• Advice for parents or carers, CAMH professionals and policy makers.

In this series, we speak to authors of papers published in one of ACAMH’s three journals. These are The Journal of Child Psychology and Psychiatry (JCPP); The Child and Adolescent Mental Health (CAMH) journal; and JCPP Advances. Subscribe to ACAMH mental health podcasts on your preferred streaming platform. Just search for ACAMH on; SoundCloud, Spotify, CastBox, Deezer, Google Podcasts, Podcastaddict, JioSaavn, Listen notes, Radio Public, and Radio.com (not available in the EU). Plus we are on Apple Podcasts visit the link or click on the icon, or scan the QR code.

Kate Cooper is a Lecturer in Clinical Psychology at the University of Bath, and a HCPC registered Clinical Psychologist and BABCP accredited Cognitive Behavioural Therapist. She has worked in a range of clinical settings, including mental health services and neurodevelopmental clinics for both young people and adults. Kate completed an NIHR-funded clinical doctoral fellowship titled “How should health services adapt to meet the needs of autistic people with gender dysphoria?” in 2022. This work led to academic publications, accessible summaries, and co-produced training materials for healthcare clinicians working with autistic people experiencing gender dysphoria, available here: https://www.bath.ac.uk/projects/adapting-health-services-to-meet-the-needs-of-autistic-people-with-gender-dysphoria/. Kate is a researcher on the Autism Depression Trial (ADEPT, ADEPT-2), supporting the development of a psychological treatment for depression in autistic adults and its evaluation in a Randomised Controlled Trial.

Transcript

[00:00:10.030] Jo Carlowe: Hello, welcome to the Papers Podcast series for the Association for Child and Adolescent Mental Health or ACAMH for short. I’m Jo Carlowe, a freelance journalist with a specialism in psychology. In this series, we speak to authors of papers published in one of ACAMH three journals. These are The Journal of Child Psychology and Psychiatry, commonly known as JCPP; The Child and Adolescent Mental Health, known as CAMH; and JCPP Advances.

Today, I am interviewing clinical psychologist Dr. Kate Cooper, who is a lecturer in clinical psychology at the University of Bath. Kate is the first author of the paper ‘Phenomenology of gender dysphoria in autism: a multiperspective qualitative analysis’; recently published in The Journal of Child Psychology and Psychiatry. If you’re a fan of our Papers Podcast series. Please subscribe on your preferred streaming platform. Let us know how we did with the rating or review. And do share with friends and colleagues. Kate, thank you for joining me. Can you start with an introduction about who you are and what you do.

[00:01:15.750] Dr. Kate Cooper: Yeah, absolutely. So, as you mentioned, I’m based in the University of Bath working as a lecturer. And I am part of the Center for Applied Autism Research Group. And my research really focuses on the facets of identity in autistic people that relate to psychological well-being. And I also do work about how to adapt mental health interventions for autistic individuals. So, the work that we’re going to be talking about today came from a National Institute for Health Research funded doctoral research fellowship, which I finished last year.And I was doing that at the University of Bath and also within Oxford Health. So, I was super lucky that I was able to work four days a week doing my PhD whilst also working one day a week in CAMHS. So doing research and clinical work with autistic and gender diverse individuals.

[00:02:07.013] Jo Carlowe: Brilliant. Thank you. Let’s turn to your paper ‘Phenomenology of gender dysphoria in autism: a multiperspective qualitative analysis’; recently published in the JCPP. Kate, can you give us a brief overview of the paper to set the scene?

[00:02:23.970] Dr. Kate Cooper: Yeah, absolutely. So, I researched this area because we know that autistic people are more likely to be gender diverse. So that means that they have a gender identity or gender expression, which doesn’t match their sex assigned at birth. And we know that some gender diverse people experience gender dysphoria, which is distress in relation to that gender incongruence. And some people experiencing gender dysphoria choose to seek interventions through gender clinics to alleviate that distress.

And just to highlight early on that the purpose of this project really was to understand that experience of distress in autistic people. But it’s really important to note that there are lots of gender diverse people who actually don’t experience distress. And many who don’t seek support in gender clinics. So, this research really wasn’t about that population. It was about the group who do experience distress and need help in the NHS.

And we know that autistic people are quite over-represented in gender clinic settings. So there was another study that was done in the gender identity development service, which is a national service for children and young people experiencing gender dysphoria. And they found that 15% of the young people there had a clinical diagnosis of autism. Whereas the prevalence of autism in the general population is between 1 and 2%. So, we know that autistic people are really over-represented in that setting.

So in my research, I was speaking to a range of different people who have perspectives on the experience of being autistic and having gender dysphoria. So I interviewed autistic adults, who experience gender dysphoria, young people who were autistic and experienced gender dysphoria between the ages of 13 and 17, the parents of young people, and then clinicians who work with both adults and young people. And I was really trying to understand how different groups thought about that intersection of autism and gender dysphoria and to compare and understand similarities and differences in their viewpoints.

And I then used something called interpretive phenomenological analysis to generate themes about those experiences. So the two kind of main themes were about how people come to discover their gender identity and then how complex it can be moving towards experience of gender comfort. And I was really, really lucky that I developed this project with the support of a group of autistic transgender adults called the spectrum support group. So they supported me. And I also had a group of academic supervisors involved as well.

[00:04:53.710] Jo Carlowe: You’ve touched on the method. But can you tell us a little bit more about the methodology used for this study.

[00:04:59.720] Dr. Kate Cooper: I was recruiting young people, who were between the ages of 13 and 17. So adults who were 18 and older. And they all had to have been diagnosed as autistic. So they had a formal clinical autism diagnosis. But they didn’t necessarily have a diagnosis of gender dysphoria. So, they needed to identify as transgender or gender diverse. And they needed to have experienced distress in relation to that gender incongruence. But they wouldn’t necessarily meet for example, the DSM criteria for gender dysphoria.

And the reason for that is that we thought that perhaps autistic people might have different experiences of gender dysphoria, which aren’t captured by the current diagnostic criteria. But also because we thought that there might be barriers to autistic  people accessing services where they could actually get that diagnosis. So, we wanted to have a more inclusive criteria in terms of gender dysphoria.

And then as I said, I also spoke to the parents of a young people and two separate groups of clinicians. So those who worked very closely with adults who were autistic and experienced gender dysphoria and those working with children and young people. I interviewed a total of 68 participants. So, 36 of those were autistic. And then I interviewed 16 parents and 16 clinicians as well. And I was really recruiting quite widely from gender clinics and autism services and community groups for gender diverse people.

Most of our participation was having an interview. So, I developed a topic guide which really focused on their experiences of being autistic and experiencing gender dysphoria. Or in the case of parents and clinicians, what they’d observed from the outside about those experiences. And with the autistic participants, I really tried to adapt the qualitative research procedures for their autism. So, I was doing the interviews either in person or by video call or phone based on their preference. So participants would be encouraged to do what they needed to do in interviews to be able to contribute. So, if that meant turning their video off or having fiddle toys or writing things down. We really tried to make sure that people could communicate in a way that worked for them.

And then I conducted what’s called a multi perspective interpretive phenomenological analysis. So, what that means is it’s really trying to understand each individual’s experience. And what the experience really means to that individual before summarizing themes across the group. And it really acknowledges also that it’s an interpretive process. So that me as a researcher, I influenced that process and those interpretations of what the participants are saying. And then the multi perspective part is trying to understand how those different groups might think about that phenomenon similarly and differently. So, the phenomenon being the experience of gender dysphoria in autistic people. So how do autistic young people think differently about that compared to adults? And how do parents maybe think differently about that compared to young people and clinicians?

[00:08:02.665] Jo Carlowe: That’s super helpful. Really comprehensive. Thank you. And Kate what did you find– what were the key findings? We’ll dig into some of the details. But what were the things that stood out for you, the highlights?

[00:08:14.003] Dr. Kate Cooper: Some of really important findings were about how autistic participants spoke about their gender identity being something that they knew very clearly and felt very strongly about. Where sometimes parents of young people or clinicians working with young people were concerned that autism might get in the way of an autistic person knowing their gender identity. And there was quite significant difference between the young people and the adults.

So where autistic adults that I spoke to were really keen to talk to me both about their autism identity and their gender identity. The young people that I spoke to were more keen to talk about their gender identity but maybe didn’t see their autism identity as being quite so central as the adults so pointed to potential developmental differences. But there was quite a lot of consensus between all of the groups about the ways in which being autistic could increase the distress of gender dysphoria through an interaction between the experiences and the features of autism and gender dysphoria.

[00:09:19.463] Jo Carlowe: Can you say a bit more about that? Sort of what challenges might a person with autism face as it relates to gender dysphoria over and above a neurotypical young person with gender dysphoria.

[00:09:31.748] Dr. Kate Cooper: Yeah, it’s a really, really good question. And I was really interested. But this was an area where there was much more consensus between young people adults, clinicians, and parents. So yeah, a lot of the participants described this interaction between the sensory needs, which can come along with being autistic and negative experiences of body linked to gender dysphoria. So to give an example of that, a lot of autistic young people can really struggle with the experience of going through puberty because of the new sensory experiences that can come along with that. Say for example, hair growth on the face which might feel quite uncomfortable. Or the sensory experience of having a period. And that was challenging for those sensory reasons. But also because that represented the body changing in this unwanted direction that represented someone’s body developing in a way that they didn’t want it to because it was not aligned with their gender identity.

And there was also a sense that alongside those difficult sensory experiences of puberty, there’s also this experience of uncontrollable change. So one’s body changing in a way which is quite unpredictable, which can be really hard if you’re autistic. And also, really hard if you don’t want your body to develop in that way. Full stop. Another thing that participants spoke about was the difficulty managing change if somebody was going through a gender transition. So, say someone was accessing a gender clinic and was having say puberty blockers or cross-sex hormones or in adult surgeries. But actually, that was something that participants described really wanting. But also finding very challenging because again it represented a big change. And even if it was a change, they really, really wanted but that disruption to their routine and habits could be quite challenging.

Yeah, and another thing participants spoke about was about how rigid thinking associated with being autistic could relate to gender dysphoria. So that may be having more judgmental thoughts about oneself and how one relates to a gender category could then increase levels of distress linked to gender dysphoria. And also, the social differences which come along with being autistic. So actually if someone chooses to make a social transition of their gender. So, changing name, pronouns, gender expression. But that’s actually a very complex social experience to have. It involves navigating quite subtle rules in our society about how gender works. And if you’re autistic and sometimes struggle to make sense of those rules or to follow them, that could be really challenging. So there was a participant who spoke about not getting the gender rule book and really struggling to make sense of those completely unspoken rules about how gender functions in our society.

And I think another thing that young people did often struggle with was the idea of making sense of both their identity as an autistic person but also a gender diverse person– that both of those experiences and journeys were quite challenging to navigate.

[00:12:48.480] Jo Carlowe: Your paper identified some communication difficulties between clinicians and autistic service users for gender dysphoria. What can clinicians do differently to improve this and what other autism adaptations are recommended for clinical services?

[00:13:06.363] Dr. Kate Cooper: Yeah, it’s a really good question because one thing that did come up was that participants felt that their needs weren’t always met in terms of autism or that their gender related needs weren’t met in autism settings. And then there was often a sense of falling between the gaps of autism, gender, and mental health services. And often a frustration, but it felt like they were having to fragment different parts of themselves for different services and a real hope for more joined up care, which I know is just absolutely hugely challenging in the current NHS context that clinicians are working in. But there were some more straightforward adaptations which participants suggested and actually that wasn’t just autistic participants suggesting them, there were also clinicians making suggestions and parents making suggestions about things they thought might help.

And in the paper, I’ve put them into three different categories. So, the first was about structuring appointments. So, it was things like giving people enough notice for appointments so that they can plan and mentally prepare themselves for what the appointment will be like. And related to that maybe giving people an outline of what the typical process might be like when attending a gender clinic appointment. Maybe having an initial kind of introductory appointment with no specific clinical tasks before then moving on to the actual assessment. And then there were things like environmental adaptations. So, things like having gender neutral toilets, being aware of the sensory environment at clinics and giving patients the option to control that where possible. So, things like having the option to turn lights off so it’s just about daylight or to remove kind of ticking clocks and that sort of thing, which can be really, really distracting for autistic people.

And then the last part was about communication adaptations. So, making sure that your communication with the autistic person is adapted to their needs. A lot of autistic people spoke about clinicians slipping into using quite technical language, using terms that they just didn’t understand, asking lots of open questions about feelings where maybe an autistic person might need more forced choice options. And also speaking at length without checking understanding in chunks. So just been quite hard to follow. But then also things like reducing the social demand on the autistic person in the assessment. So maybe minimizing gesture, eye contact, not using lots of different tones in your voice and volumes. So just trying to minimize the pressure in terms of social interaction as well.

[00:15:52.550] Jo Carlowe: Are there places clinicians can go to get better resourced?

[00:15:56.630] Dr. Kate Cooper: There are recommendations in the NICE guidance about how to make adaptations. Also, for this specific context, I did make some training videos about how to make these adaptations. So, they’re aimed at clinicians. And they are actually password protected because I only want clinicians to watch them. But if anybody does want to watch those training videos, they’re more than welcome to get in touch with me. And I’ll share the password to access those training videos. And I can share the link with you to the website.

[00:16:27.485] Jo Carlowe: It’s excellent. We’ll add that to the website. You’ve already touched on the different perspectives that clinicians and parents and autistic young people had. And your paper found significant differences in opinions between these groups. Can you elaborate on this what did you find and what are the implications?

[00:16:47.720] Dr. Kate Cooper: Absolutely. So I think there were some key things where there was real agreement. And one thing that participants tended to agree on was that gender identity is this innate and knowable experience that people have. And so there was this agreement that you should be certain about your gender identity before making any changes. But I suppose where there then was divergence, was that autistic people I interviewed were very clear that they knew their gender identity and felt very certain about it. People used phrases like their gender identity was very deep, very young, they felt really certain about it. And all the participants that I interviewed for adults often pointed to the fact that their gender identity had been very stable for a very long time. But then the adults in the lives of young people. So the young people’s parents and clinicians were sometimes quite concerned that the young person might not feel so certain about their gender identity in future. And that there might be developmental changes. So they agreed that gender identity should be certain and known. But maybe we were less convinced that the young person had had a stable gender identity for long enough to access physical treatments like hormone blockers. And a sense of being concerned that young people might be making those decisions to early. So that was quite a big difference in opinion.

Another really interesting difference, which I mentioned briefly earlier was the idea that autistic young people didn’t want to think much about autism, whereas the autistic adults did. And actually the autistic adults for a really interesting perspective on that which was that as they had got older and understood a bit more about themselves, they came to accept being autistic and see the strengths in being autistic in a way that I think was really hard for the young people. I think the young people I spoke to were often very concerned that if they spoke about autism that would mean that people were less likely to believe them in terms of their gender identity. And so maybe we’re trying to minimize talking about that. Whereas a lot of the adults I interviewed were already on the path of having a gender transition, having physical interventions, and so maybe felt a bit more confident to explore that side of their identity. But also the young people were often in really difficult social environments at school, with peers where they were being bullied or having really quite negative experiences that they sometimes linked to their experience as an autistic young person. And I wonder if that made it harder for them to consider autism as a part of who they were as well.

Another place where there was that consensus was the ways that autism and gender dysphoria interact with one another and generally increase the experience of distress. So, through those kind of sensory experiences difficulties will change social challenges. And this idea that actually autistic people if they did experience gender incongruence might be more likely to experience distress in relation to that than non-autistic people for all of those additional reasons. And actually there was real consensus on the challenges of meeting the needs of autistic people with gender dysphoria within current health care settings.

[00:20:07.880] Jo Carlowe: Did the stress diminish with the older group?

[00:20:12.272] Dr. Kate Cooper: Yes. You know, I can’t really say for certain from these qualitative findings. And I did measure mental health needs in both groups. But obviously it was a very small sample size. And so you know it wasn’t possible to do a comparison of those two groups. But what participants described in the interviews was that as they got older, they experienced less distress. Those who had made a gender transition described that being a massively positive thing for their sense of well-being.

I suppose the important thing to note is that the adult participants were really different cohort to the young people. So, most of the adults that I spoke to especially those who were in their 30s on wards had come out as transgender at a time where it was– there was very little knowledge about transgender identities. Where very few people accessed gender clinics and where there was generally less societal awareness around that.

Whereas the young people who were aged between 13 and 17 had all grown up in an era where there’s much more of a public discourse around gender diversity. And a higher number of people accessing gender clinics. And also more awareness of autism and more access to autism diagnosis. So I’d be reluctant to draw direct comparisons about the changes in gender journey. But I thought it was really fascinating that the adults still were much more willing to think about autism as a part of their identity even having grown up in a world which was maybe even less accepting of the differences associated with autism. And where it was more difficult to get an autism diagnosis. Although half of the adults had been diagnosed as autistic as children and young people.

[00:22:02.727] Jo Carlowe: That’s really fascinating. Kate, is there anything else in the paper that you would like to highlight?

[00:22:07.970] Dr. Kate Cooper: I think just to summarize really the way that autism and gender dysphoria intersected, you could break it down by the different features of autism. So, there was social communication and interaction domain of autism. There were experiences linked to feeling different and one’s sense of self and how that [INAUDBILE] dysphoria could interact there. This idea that gender is a social experience. And that could be very complicated for autistic people. That there’s a need to communicate one’s gender needs and social communication can be really challenging, especially in a clinic setting for autistic people. And then for restricted and repetitive behaviours domain of autism. There’s this idea of sensory differences which can cause challenges in terms of both sets of someone’s identity. The difficulties with changes during puberty and making a gender transition and then the rigid thinking. So just summarizing those two different domains.

[00:23:11.300] Jo Carlowe: Are you planning some follow up research or is there anything else in the pipeline that you’d like to share with us?

[00:23:17.003] Dr. Kate Cooper: Yeah, it’s a really good question because these findings are purely qualitative and quite preliminary. And we definitely need so much more research in this area, especially given what a controversial area it is and how much media focus there is and that the services are being redesigned for children and young people at the moment. So I am really interested in developing and testing autistic led groups to support balanced view of autism as part of one’s identity in autistic young people in particular.

And supporting autistic young people to navigate the challenges of living in a world, which is really biased in favour of neurotypical people. I think there’s definitely an argument that there should also– there needs to be more societal change and acceptance of difference and diversity. But I think given that we do live in a world that really stigmatizes autistic people, providing support to individuals is important as well. So, I’m in the very early stages of doing work in that area.

And then I’m also really interested in actually what you asked a minute ago about understanding more of the course of gender identity development in autistic people from early childhood to adolescence. So actually not so much trying to understand how the distress changes but understand how one’s view of oneself develops over time. And actually, I think we really need to understand that better in neurotypical children and young people as well because a lot of the research in that area was done in a very different context. And [INAUDIBLE] one that we’re living in at the moment.

[00:24:51.403] Jo Carlowe: Any particular message to CAMH professionals any advice for them?

[00:24:56.360] Dr. Kate Cooper: What’s really challenging becomes professionals at the moment is that the services are really changing. And that we’re in this shifting landscape. But not only in terms of service provision, but also just in terms of discourses and how gender diversity is spoken about. And I think a lot of people as a result of that can feel really scared to talk about gender. Or conversely really overly focused on gender when they’re working with a gender diverse young people, even if– person– even if that gender diverse young person isn’t especially distressed by their gender identity. So I think that kind of the current context and polarization in this area can actually lead to people overly focusing on it or ignoring it. And I guess I’d advocate for a middle ground. And focusing on it if the young person is bringing it as something that they feel distressed about. But maybe not jumping on it if it’s not a key presenting issue.

And I suppose also just reassuring people or agreeing that actually this is a really polarized area. It’s lacking a nuance in a lot of the media discourses around it. And I think we really need to support autistic people experiencing distress in relation to gender incongruence by listening really carefully. And using the skills that comes- professionals are so brilliant with listening to people’s experiences and modifying your approach based on their unique and particular identities and experiences rather than trying to apply blanket one size fits all approaches.

What I often say to people is once you’ve met one gender diverse autistic person, you’ve met one gender diverse autistic person just like the [INAUDIBLE] you hear about autistic people. And I think actually when you stop thinking that you have to apply a blanket approach to everybody you meet and stop thinking in the way that the media narratives often will encourage you to think. And it frees people up to use their clinical skills that they absolutely have as they would apply them to young people experiencing a whole range of difficulties.

[00:27:03.962] Jo Carlowe: Excellent advice. Finally, Kate what is your take home message for our listeners?

[00:27:09.490] Dr. Kate Cooper: So I think aside from what I was just talking about, which is that we really need to listen to the individual experiences of autistic people experiencing distress about gender incongruence and try and step outside of those polarized media messages, it’s really about thinking about how autistic people might change in how they think about their autism identity over time. I think it would be really fantastic if we were in a situation where we could offer more support to autistic young people to make sense of their autism without that feeling like a threat to their gender identity or gender expression. And I think we’re in a very challenging landscape at the moment to do that. But I hope that that’s where we can move to at some point.

[00:27:57.272] Jo Carlowe: Thank you ever so much. For more details on Dr. Kate Cooper, please visit the ACAMH website www.acamh.org; and Twitter @acamh. And don’t forget to follow us on your preferred streaming platform. Let us know if you enjoy the podcast with a rating or review. And do share with friends and colleagues.