Sexual Wellbeing for Autistic People – Dr Jeroen Dewinter

In the latest Middletown Podcast, we chat about sexual wellbeing for autistic people. Dr Jeroen Dewinter shares his research on community perspectives to better understand and support sexual wellbeing.  

In this episode we mention the support service BelongTo  

Transcript

Welcome And Topic Setup

SPEAKER_01 0:10

Welcome to the Middletime Podcast. I'm Kat Hughes, I'm a researcher at Middleton and I'm also Autistic. In this episode, I chatted your round the winter, a brilliant researcher who works to help us better understand autistic sexuality and gender. We talked about the importance of understanding sexual well-being and the different or not so different path that sexuality and gender might take for autistic young people. Some of our podcasts come with trigger warnings if we think a topic might be difficult for listeners to hear. There's no trigger warning on this episode because sexuality is a healthy, normal part of everyone's life. It is an episode that might bring about some big questions for young listeners. So have a think about whether it's suitable for little ears if you're not in the space to have those conversations today. I hope you enjoy our chat. Well, John, it's it's so lovely to chat to you and have you on the podcast. Um I wanted to start by asking you what we mean when we talk about the concept of sexual well-being.

SPEAKER_00 1:03

Let me first thank you for uh thank you for inviting me um to to talk about this important uh topic. And thank you for uh to your listeners um for taking the time to listen to uh to uh uh this discussion. Um there is a lot of discussion on uh how we can define sexual well-being, and I think there is not one um perfect definition that we all agree on at this point in time. Um I I often and I think in the literature you see people referring to sexual health on the on the one hand one hand and and well-being, and often combined like sexual health and well-being. And when we talk about sexual health, we often refer to the definition by the World Health Organization. And I think what they really what they did really well is that they early in the in the in 2006 they um had a discussion and they drafted a definition of what sexual health would be, and they combined aspects like pleasure, rights, um, the absence of disease, the absence of violence, um uh, and so they combined the positive aspect with the older um negative aspects or more biological aspects of uh sexual health. And I think we have some definitions of um well-being or of sexual well-being now, um, and they focus more or they see, they define sexual well-being as a part of our general well-being. Um, and they refer to aspects like safety and security, respect, self-esteem, resilience, um, self-determination, um, being able to give consent. And I think all these definitions combine aspects of sexual justice, sexual health, sexual pleasure, sexual rights.

WHO Sexual Health And Rights

SPEAKER_01 3:07

Obviously, I'm in Ireland and our sort of acceptance of sexuality and and and understanding of sexuality has progressed massively in a very sort of short space of time. And I was wondering, in general, has our sort of societal views on sexuality in relation to disability and in particular autistic sexuality, has that progressed in sort of the same way?

Shifting Societal Views And Disability

SPEAKER_00 3:32

I think in a kind of different speed. In general, the discussion on or the the way we think and do research on sexuality and talk about sexuality has been changed over the few past like four decades in in in high speeds, from like when I was young, there was a the focus was more on preventing problems like preventing SIDs or uh preventing um early um or or uh early pregnancies um or preventing violence, and later on, or like in the past decades, um, there is more focus on enjoying sexuality and pleasure, on um being able to be yourself, or um the the value valuing the diversity of sexual identities and and and sexual preferences of people, um which is I think good. Um on the other hand, you see in general you see that uh the way we think about sexuality, no, not the way we think, but the way in society um people think about sexuality and disability, um sexuality and autism. Um you see a a similar um evolution, can you say it like that? Um, but on a I think on a on a slower pace uh compared to how we think about sexuality in in in general. Um so there are um definitely uh some activists and and and uh advocates for um uh sexual well-being and for autistic people and for uh people with disabilities, if I can say it like that in general. Um, but I think a lot of work has to be done um in that field. What is really important is that in the past decade there has been more and more attention to the experience of the experiences of people, autistic people relating to their sexuality or in general to the experiences of the lived experience of disabled people and their sexuality. And I think that is has been and is still really important to um get a better understanding of the needs and experiences of the people of people themselves, and that I think is really necessary to think about how we can support the well-being of autistic people relating to their sexuality or to these people with disabilities and their sexuality more in general. And I think that this shift to listening to people themselves um reveal that that um revealed the importance of um paying attention to the diversity of experiences or to um to to the needs of people with intersecting identities. And I think um that is helping us to make some additional progression in supporting the well-being of people.

SPEAKER_01 6:44

Yeah, most definitely. And I suppose I want to ask you about some of the work that you've done, and I know the work that you've done is massive, so I'm asking you to really kind of condense down what you've done. So apologies in advance for that. But I know some of your research looked at autistic people's experience of and their thoughts on sexuality. Um, and what did you find within that?

Listening To Lived Experience

SPEAKER_00 7:04

I tried to contribute to that. I think when I was starting in this field, um there was no research where, or there was not much research where um autistic people themselves were questioned or surveyed or um interviewed about their experiences. Um so um at the beginning we we try to um or we we used a survey that in the Netherlands is is um used in to monitor the sexual health of large groups of really large groups of people in the general um population on their sexual experiences and their sexual well-being. Um, and we were able to use uh this that that survey and um asked a rather small group of 50 autistic boys to um to report on their experiences. And later on, we or doing that doing that research, um, we discovered I had the impression that it was not that I should focus not only on what they experiences they experienced. Did they have um uh experience with falling in love or did they have experience with solo and partner sex, but um in which context and how they experienced it and um uh with uh whom they had those experiences. So my urge to do some more qualitative um uh studies on uh or work on the sexuality of photos people um was really stimulated by the boys that asked me questions or um told me about their experiences while they were completing the survey. So that was um that made us decide to uh do a first um broader interview study with some of the kids who participated in the survey study on their experience of sexuality and being autistic. Um and luckily over the past few years, a lot of colleagues have been doing similar work um in this field, and I think the combination of um larger scale quality of quantitative studies, like Elizabeth Weir and colleagues did a large study in the UK. We are now conducting an even study in a larger group in the Netherlands. Um people in Canada and Australia did similar things, and I think that helps us to get a kind of idea on um the experience, and on the other hand, doing more qualitative studies, and we have there are brilliant people um around the world who are doing um interview studies on topics as gender identity or sexual experiences or um uh kink or so, and I think that combination is really valuable um to get a better understanding of the sexual experiences and needs of autistic people, and that helps us to contribute to better support and promoting sexual well-being of autistic people.

SPEAKER_01 10:13

Absolutely, and yeah, I I think the fact that all of that is sort of coming from actually speaking to autistic people and finding out autistic people's experiences is so so important, isn't it?

Early Studies And Methods

SPEAKER_00 10:23

Yeah, and really necessary. I think we we tried, I think we were going to talk about the recommendations we developed some years ago, but one of those recommendations was to make sure that people have um access to general information on sexuality and autism. So we were thinking about how to do that. And last year we met a group in the Netherlands, or we a group in the Netherlands contacted us and asked um whether we could provide them with information on autism and sexuality because they wanted to make that information accessible. So we um um collaborated or started a collaboration between people in Belgium and people in the Netherlands, and we developed um together with autistic people and researchers and clinicians a website, and later we that was published as a book. Um, but I think I'm really happy with the website because it's there are experiences from autistic people that um are accessible for autistic people and and and people around them for professionals. There is some general information based on what we know, um based on scientific research, and there are some um recommendations based on clinical experience or lived experience of people. But what I what I was trying to um go, what I wanted to tell was that a lot of people we we uh my colleagues asked or um sent out the survey in the networks asking which information we should discuss on the website. And the question that was uh most recurring was uh is while I am experiencing normal, uh am I normal? And I think uh to uh understand that or to get a sense of is my experience comparable to other people's experiences, we need insight in the experience of of autistic people. Yeah, and we should make that accessible to other people so people can exchange and see whether their experiences align with other people's experiences or what they can learn from other people. And I I hope that contributes to feeling comfortable about your own experiences or um asking for help if you uh still um find out that the things you are experiencing are are not found by other people and things like that.

SPEAKER_01 12:48

So yeah, that's incredibly powerful, isn't it? Because I I I think so much of autistic experience is sort of going, is this what other people experience? Because you that having that for almost here is is really, really difficult, you know. So yeah, I think that's incredibly powerful and incredibly useful for people to have. And then did you find when you looked at sort of the the experiences and and thoughts of of the autistic young people, did you find that there were differences between autistic and non-autistic?

From Surveys To Interviews

SPEAKER_00 13:18

Um in our in the first study with a with uh autistic the we started with a study in autistic boys um at that time between the age of 15 and 18. And um what we found we didn't find any difference um between the number of boys that reported experience with uh sexual interest uh or who reported being interested in sexuality and relationships, um, and the number of boys who had solo and partner sexual experience. So uh an equal number of boys in the general population and autistic boys reported um having solo and partner sexual experience. Um, and I think that was important because at that time we only had um information based on a parent report or caregiver report, and um, based on their reports, we really underestimated how that um autistic boys were um had um sexual interests. Um and I think based that results just indicate that we really need to provide sexuality education at a comparable age as um kids in the general population, and in a general population, I think no not everywhere, but um I think from a sex positive um and a focus of sex positive approach and a focus on well-being, I think the general or the all the research supports the idea that you already should provide sexuality-related um education from early age. Um, and that doesn't mean that we have to to tell or to talk with um young child children about partnered sex, but that we should discuss things like um how how do we talk about our bodies and um your personal um boundaries, uh what you want and what you don't want, and how how to indicate that, and then later on we talk about things that are relevant um at at older age. But um I think we should um I think those results just uh indicated that sexuality is relevant and that we should pay attention to sexual well-being also in autistic kids.

SPEAKER_01 15:34

Absolutely, that's incredibly important as well, isn't it? Um and then in relation to gender identity and sexual attraction, have differences been found between autistic and non-autistic folk?

SPEAKER_00 15:47

Um yeah, definitely, and that it has been uh replicated now in in several studies. Um after that first study, we um were allowed to in the Netherlands you have the Netherlands Autism Register, and that's a large database of um autistic people who have volunteered to report on their um how things are going um at uh at regular um moments in their life. Um so at first we were allowed to um ask that group of people about their um relationship status, their um gender identity and sexual interest, and there we found um what has now been replicated, replicated in several studies that um more autistic people, especially those assigned female at birth, um don't uh recognize or don't identify um um their gender in line with theirs with the sex assigned at birth. So um there was a higher proportion of uh people assigned female at birth reporting that they didn't only um identify as female, for example, and on the other hand, uh a somewhat smaller but also larger number compared to the general population of the people assigned male at birth reported not only feeling male when we asked uh for their gender identity. And when we looked at sexual attraction, the difference is even higher. About half of the people assigned female at birth uh then reported to not only feel attracted to someone of the opposite sex, and about one in five of the people assigned male at birth um indicated that they didn't not only feel attracted to someone of the opposite sex. So I think the gender the sexual um um sexual identities, or there's a lot, there's more variation in sexual identities in autistic people compared to the general population.

SPEAKER_01 17:47

Um I suppose that's something that that really resonates with me in terms of gender in particular, because gender has always been just an oddity to me. It's almost sort of a a performance that I don't understand. And do we know do we know why gender is sort of perceived differently for autistic folk? Or have we started to to look at that yet?

Findings On Experience And Education

SPEAKER_00 18:11

Yeah, I think we're we are you know, we are trying. Some people are in research, we are trying to get a better understanding of how to understand why we find we at first we just asked for gender identity. Um, and I agree it's a very complex, broad, hard to understand concept. And um, if people ask me to explain it, I I'm really struggling. Um so afterwards, uh there have been more qualitative studies where we interviewed, or we or other researchers researchers started talking with autistic people about um can you about what gender identity means and um what ways would be suitable to their describe their their um identity or how they experienced the development of their um gender identity. Um and I don't think we understand that enough already. Um and you see a lot of variation, for instance, I I was really or I am still um um curious about um how people describe their gender identity as autogender, um, explaining how they feel that they're being autistic or their their autistic identity is uh closely intertwined with their gender identity and that they can't separate um things from each other. And I think that aligns with what we were just talking about feeling different. If you feel different from early on in your life, um, I think all those a lot of concepts of a lot. of experience of people are um I can imagine that a lot that some people are how do you say that unsure or questioning um whether their experience is the same as the neurotypical um community around them and whether the how they are experiencing things is kind of and I say quote unquote um normal and I can imagine that for some people that feeling of how can I interpret interpretate my experience compared to that of the neurotypical community also has an impact on how they feel about their gender identity. But I think you you see I hear a lot of different um people autistic people the autistic people I talk a bit about their gender identity describe their identities in several and and how they um develop their identities or think about their identities develop in different ways so I I don't think or I think it's a kind of tricky or risky to look for a a one-size-fits-all mechanism I think there are different mechanisms making or um leading to how someone identifies at one point in time and I really think that we should be open and discuss with people what they need to feel okay about their identity and to see what they need to be to to be able to be who they want to be or value to be and to do what they want to do. But I think it's also important to yeah to pick to pay attention to how people came to their identities or how people develop their identities through their life and so take the time to talk about that. Okay you're feeling like that can you explain can I I really like to understand how you came to that feeling or to that decision and can we talk about that and then see um if you need something and if you have additional needs or or if you need something to feel okay about that.

Gender Identity And Attraction Patterns

SPEAKER_01 22:07

Yeah that's it yeah and and as you say the focus on what someone needs to be comfortable to be themselves is kind of the main thing isn't it and then you're back to wellbeing I think yeah being okay with with who you are being able to be who you want to be are I think crucial aspects of yeah most definitely yeah um and then you mentioned uh the recommendations that you worked and I was very lucky to be very slightly involved my main involvement was sort of watching everyone be brilliant and be so impressed by how intelligent everyone was we were really happy to have you uh in the team and I think everyone's contribution was really valuable. It was it was an astonishing group of people early on but um so it was a group of researchers and advocates from the community coming together to to create some recommendations and and it was can you tell our listeners about some of those recommendations?

Why Gender Feels Different

SPEAKER_00 23:03

Yeah I'm happy to add it was a really great uh it is it it's a a bunch of really um great people um we we discussed in a in in um uh some rounds of discussion um um what we would recommend um to promote the well-being of autistic people relating to their sexualities and gender identities and then in the next phase we created a survey and we tried to um spread that across the world or around the the the globe um and um to to get some feedback from the autistic communities in several parts of the world on whether they supported would support that um recommendations or not. And our group of experts and advocates developed um recommendations in four groups and I think the first the first one was make sure people have good information and comprehensive sexuality education from a positive or a sex positive um background. The second was make sure that um healthcare relating to sexuality is okay so train professionals make sure they know how to work in an autism friendly way with people make sure that they have the knowledge and understanding of sexuality and and and autism and an aspect of that healthcare was also to make sure that there is good um trauma related care for autistic people who have been the victim of um sexual abuse. And then the third important group was um if we want to promote sexual um well-being of autistic people then we should in keep on investing in understanding autistic sexuality so um there was a call for additional participatory research on sexuality and there was a fourth group that we as researchers and advocates agree on um and that was um create supporting communities or um uh invest in peer support but that what that um recommendation was wasn't um uh endorsed by enough people in the in in the people we reached um when we we surveyed or sent out a survey but I think um so we we didn't include that in the final report but um I kept on thinking about it because when you read there have been some really great um books for instance um the book uh edited by Hannah Bertil's daughter Roskvisk on um uh autistic um sexualities um they she of or the the group of editors um invited autistic people to report or to write on their um experiences and in in several of the chapters you see a call for peer support and to meet other people and support each other so um I think I can understand that it's not um uh uh a recommendation that's uh fits or is suitable to all people but I think it can be helpful to to some people so information healthcare and additional research that were the main were the main uh recommendations brilliant and then are there resources that you think are particularly useful you've kind of mentioned a couple already yeah um I I really think so and I I think some of some people did really great jobs and I was looking for um these resources um in English that are accessible for for your listeners um and there is the the website of the SALE project and that's uh an acronym for supporting autistic adults intimate lives by the developed or um Monique Heusamen if I pronounce that right and otherwise Mick I'm really sorry. But they developed a website and you find five can find it on altlives.com and there is a resources um yeah section with a lot of uh interesting podcasts and literature and um YouTube videos that are I think interesting for for um your audience um so I think that's interesting and I also wanted to refer to the work of Amy Pearson who is at Durham University and she uh on the on their website uh which is uh just the university's website and then you can search for the Center for Neurodiversity and Development and on their website um are some impact and engagement um um um Boris and uh impact and engagement section with um some really interesting material on healthy um romantic relationships for autistic people and some resources that can help to discuss content and um um how to deal with that or indicate your uh wishes and desires and and and and boundaries so they did uh they did really wonderful work so I think that's a valuable a valuable resource uh as well definitely um and then my very last question for you is um would you have any advice for parents who want to support sexuality and well-being in in the young person that they're looking after I think based on our recommendations I think it's really important that people have access to information even if they don't want it then we are not going to for force them to to to read it but I think we should make sure that they if they want the information that they have access to it. So I think making sure that you have it or like I I always would advise parents to try to talk with their kids about um being human and and and the sexual aspect of that and if you're uncertain or it is it is difficult when I'm I'm doing that as a professional and I really have to practice um to to use some clear language and words and when I have not done it for a while then I have to practice before the mirror to say or to use more concrete language. But I think it also can help to just explain that you feel a kind of uncertain to talk about this and that you don't want to force your kid to talk about it but that you think it's an important aspect of life and that you feel it's important to provide information or make sure that if your kid wants information that he has access to it or she has access to it. And if that's too difficult or if your kid feels uncomfortable about that, I think it's important to uh see whether there are other people in your networks who can be of help like another family member you trust or a care provider or a professional who feels comfortable to discuss issues and where your kid feels comfortable to discuss these issues with. And I'm not sure how things are going in Ireland on on that level but I also think it's helpful to if people want to or kids want to meet other kids with similar experiences for instance other queer kids or other kids who are questioning or um thinking about their gender identities to um see if there are groups where people can meet other kids or other um young adults to exchange experiences and to um yeah discuss their experience with others in a safe context.

Individual Needs Over One-Size-Fits-All

SPEAKER_01 30:56

Absolutely and I know I know in Dublin and in Leinster we have uh belong to youth services and antennee who are really brilliant at that and I'm sure around the country I I'll find resources and make sure we have them up if if there's more but yeah definitely we have some of those resources. I think it is it that sense of community is so important isn't it and being able to see yourself reflected in other people makes such a difference.

SPEAKER_00 31:20

Yeah and that helps I think to feel like to to be yourself and to feel accepted and to feel like normal um in in a group of people who have uh similar experiences and that's yeah then we are back to our the the well-being at the start we can't get away from it no harm brilliant well that is all of my questions thank you so so much for chatting to us thank you for uh for having me again thanks so much for listening to the podcast it is a conversation based interview designed to stimulate thinking and hopefully support the development of practice it's not intended to be medical or psychological advice expressed in these chats may not always be the view of Middletown Center.

SPEAKER_01 32:03

If you'd like to know more about Middletown you can find us on X at Autism Center on Facebook and Instagram at Middletown Center for Autism. Go easy until next time