Episode 1 – Being Intimate

Speaker 1:                        Welcome to Loop Me In, the podcast community for parents and carers on raising children with disabilities. Join presenters, Dr. Lisa Interligi and Christine Christopoulos and their guests in sharing experiences, information, and support ideas to help children with disabilities flourish. Loop Me In is brought to you weekly on platforms like Apple Podcasts, Spotify, and Stitcher, to name a few. You can learn more, connect to the Loop Me In community and listen to more episodes on our website, loop-me-in.com.au.

Speaker 2:                        Welcome to Loop Me In, and here we go. For our fourth season, which we are super excited to get started. Today, we have a very special guest who I’ve been very excited to talk to about a subject that not many parents want to talk about with their adult kids, especially when they have a disability. Melbourne-based psycho-sexologist Chantelle Otten joins me who is an international acclaimed sexologist with a background in sexual medicine and counseling. She believes that everyone is entitled to a healthy sexual life. Welcome, Chantelle.

Chantelle Otten:             Thank you so much. Thanks for having me. I’m excited to be here.

Speaker 2:                        We’re very excited as well. Can you first tell our audience what is a sexologist?

Chantelle Otten:             Yeah, so basically, I mean it’s kind of like a very fancy word for a sex therapist, but you can be a sexologist in multiple domains. I just specialize in therapy, but basically I work with people to help them reach their goals in their sex life and make sure that their concerns are treated in an adequate way. So that might be something like sexual pain or a desire concern or erectile dysfunction, premature ejaculation, or things that are a little bit more complex like gynecological issues, but also things like disability as well, which is why we’re here.

Speaker 2:                        That’s right, and I’ve spoken to a lot of parents on this topic and you’re probably not going to like what I’m saying, but a lot of us are in the same boat, it’s something that we just don’t talk about as carers to our adult children with a disability. So I think the most important thing today for me would be if you could guide us into someone comes to you with a disability, and like anyone, they need to have a normal sex life the same way we do. Can you briefly talk to us about what happens in these sort of situations?

Chantelle Otten:             Yeah, I mean of course I’m not upset that you don’t talk about it. No one is given the tools on how to discuss sexuality first and foremost with themselves and with their sexual partners, second of all, with their children, especially when it comes to complexities like intellectual disabilities for example, and navigating that. I think that when it comes to disability and sex, there are so many different domains of disability that you have to consider. And from my perspective, it all starts with curiosity, and I think curiosity with your child. What do you know? What do you think sex is? What does it mean to you? Who’s taught you about it? Did you learn it at school at all? Do you feel sexual urges? Do you ever explore your own body? Start with them, not with them and other people, for example.

And I think starting to have a conversation as well around what consent is, probably, and also if you want to hug someone, you have to ask them and they have to say yes. And if you want to give someone a kiss, even if it’s on the cheek, you have to ask them if you don’t know them, and ask them if it’s someone that you really want to get closer with, you have to ask anyone and they will start responding because it’s easier to start making boundaries and set them from the get-go. And that can make things like navigating a sexual life also a lot easier, because I think one of the primary problems I think with intellectual disability is not knowing how to actually navigate what sex is and also how to ask someone else for even intimacy, for example.

Speaker 2:                        Yeah, I really don’t think there’s enough education also in the non-mainstream schools. What are your thoughts on that?

Chantelle Otten:             Look, I don’t work in school education, I work in adult sex ed. My patients are, of course, I’ve got teenagers that I work with. But I think, thinking back, I’ve got a sister with an intellectual disability, I think she did receive education and I think she had very much a of an open conversation. Maybe that was also just with my parents. But I do know that education is getting better. However, I’m definitely not the expert on what is happening in school, so I can’t really answer that question properly.

Speaker 2:                        And I think it’s what you mentioned before, the most important thing is consent. I know with Matthew, Matthew is kind of very touchy feely and it’s all about teaching him the consent of asking whether that person would like him to cuddle them or I guess that’s the first step of them understanding when they’re on that type of disability, isn’t it?

Chantelle Otten:             Yeah, absolutely, and it can be hard depending on where your child is at on their spectrum of disability, and of course for some types of intellectual disability, there are hypersexualized behaviors as well. So it can be a little bit tricky sometimes, but that’s okay. I mean, I hope that every parent or caregiver has some support that they can lean on with this topic, but it is a little bit challenging. I think also teaching them about self-pleasure is really important as well, so knowing that they can get pleasure from their own bodies, where is an appropriate place to do that? When is appropriate? Can you talk about it with who, et cetera. I think that’s all really important as well. I think that also if your child starts to get a crush on someone, how do you navigate that?

I was doing a talk probably three weeks ago and I had a young man in his 20s come to me and he had autism and he was like, “I really want to find someone to date.” And I was like, “Okay, how have you gone with that?” And he was like, “Look, I’ve been looking for seven years.” And I’m like, “Okay, well what happens when you meet someone?” He’s like, “Well, I don’t know if they want to go on a date with me.” And I’m like, “Have you asked them?” And he was like, “No, because I don’t know if they want to go.” I’m like, “You have to ask them to find out whether they want to go on a date with you or not.”

So of course there are going to be things that we think are really simple but aren’t that simple for those who have neurodiversity or different abilities as well. And I think you also have to factor in physical disabilities as well can pose a challenge in terms of self-esteem, in terms of what can I do versus what can’t I do, in terms of feeling as well, and I guess how the body also works. So it’s kind of rambling on because it’s such a complex topic, there’s not really one answer.

Speaker 2:                        That’s right, and like you’ve just touched on there’s so many different types of disability as well. I’m sure you’ve had patients with cerebral palsy and in a wheelchair, all types of disability. So there’s no… And even someone on the autism spectrum or intellectual, there’s so many different areas of that. I know with Matthew, his understanding is very low, so him wouldn’t really understand consent, so that’s the first stage we’re at the moment where he has to learn no means no, so that means not touching. You did also mention self-pleasure, and I think that’s an area that we don’t… When we think about sex, we don’t actually think about self-pleasure and that could be a safer way for children like our kids to start that process. I know with Matthew, I probably shouldn’t be talking always about Matthew, but even touching themselves and that it’s always something, you can’t just do that in front of people, it’s just teaching them to do that in a private place.

Chantelle Otten:             Yeah, 100%.

Speaker 2:                        I know I’ve asked a lot of questions to families with girls and the biggest thing they’re worried about is being vulnerable and being taken advantage of. How do we teach our girls that with a disability that they don’t have to say yes all the time just because they’re… That’s quite a difficult topic to bring on, isn’t it?

Chantelle Otten:             It’s a really hard one, and look, safety concerns are… They will always play at you, I think especially… I mean even if you have a child without a disability, there’s so much vulnerability there. But I think that when you factor in intellectual disability and not knowing who’s safe and who’s not, of course that’s a concern. It’s something that I’ve worried about a lot with my own sister. And I think all you can do with anyone is try your best to teach them that their body is theirs to own, teach them about safety, make sure that they have a buddy when they’re going out, make sure that they have a buddy on public transport.

Talking to them about speaking up, knowing first and foremost the true ways to label their body first and foremost and their genitalia is probably really important. And then saying to them, “If someone touches you, you can say no. If you become uncomfortable, you can scream, you can make a big deal.” I think that that is important. I think safety is always going to be quite complex and I look at dating and disability quite a bit. My sister’s married to an intellectually disabled man. They have an apartment together next door to my parents’ house.

Speaker 2:                        I was going to ask you about your sister. Can you tell us a little bit about her?

Chantelle Otten:             Yeah, so my sister has global developmental disorder, so it’s hard to know what happened. She was born with a condition called gastroschisis, which is quite rare, it’s where your intestines and your stomach are on the outside of your body when you’re born, there is no stomach wall, so you’re in hospital for a long time as they start to build and encasing and push all of that back into the body. She had lack of oxygen during one of her operations, so it’s hard to know whether she was born with an intellectual disability or whether that was something that came on after some of her treatment. She lives a very happy life. My parents are very, very active and we have a very close family. She just has a lot of fun. Honestly, she’s a pain in the arse. She’s still my older sister and she trolls me all the time and tells me… She’s like, “My boobs are bigger than your boobs, and what’s it like to have pimples?” She’s like, “I’ve never had one.”

She’s really, really funny. And she has been with her partner for about 10 years now. She’s a year older than me, so she’s 32 at the moment. We’re the same age for two weeks of the year, so I’ll be 32 in three weeks, and we’ll be the same age for a little bit of time. And she basically has the mind of a seven year old. She is quite developed in some areas of interest, so she loves talking about sex and boobs and self-pleasure all the time and what she’s doing and how much lubricant they’re using and all this kind of stuff. And she’s very progressive in that area because she loves those taboo topics. And my brother-in-law, he’s really funny as well. They’re just on the same wavelength, and my parents have done very well in fostering their relationship. They were engaged for a really long time and then they had a beautiful wedding and they had 400 people there. Everyone who has helped create this beautiful life for them that was celebrated at that wedding.

So they have a lot of fun. But yeah, I think from their lives I know that it’s always been important for them to have a buddy or some friends as well that have disabilities and have stayed… My parents have stayed living in an area where we all grew up and we have friends with disabilities. I grew up going to parties with intellectually disabled people. So for me it’s just my normal and it’s very easy to, I guess, understand disability. It’s not like that for everyone else. And I think some people won’t be able to understand why is this person acting a little bit strange? Why don’t they understand me? I think also… I have ADHD and I have a lot of patients who have neurodiversity as well, and often that goes hand in hand with things like autism or dyspraxia, for example. Even things that are kind of low on the spectrum, there are always going to be challenges with how that plays into relationships and sexuality.

Speaker 2:                        Yeah, it’s so lovely to hear about your sister’s story. I’m sure there’ll be a lot of people out there that find that fascinating. Because at the end of the day, even though any sort of disability, there’s still that sexual need and that isn’t taken away from them just because they have a disability. Think that’s something, as families, we don’t… Just want to avoid it rather than allowing them to live a normal life as possible, like your sister is. Even if it’s a little bit different, it’s still meeting their needs. Can you tell our audience about when someone comes to visit you as a sexologist, is it funded by the NDIS? Is it something that families can use their funding for?

Chantelle Otten:             Yeah, so if you’re self-managed, yes, you can get funding for it. It’s not on the Medicare rebate plan, but yeah, we have a lot of patients with disability who are self-managed and use their NDIS funding for appointments.

Speaker 2:                        And is it something that, when someone comes to you with a disability, is the families also involved or the carers so that they can understand? Because I would imagine you’d have to build some sort of community around these people to keep them safe, make sure who their sexual partners are. Is it a group thing?

Chantelle Otten:             If they want to be, of course, there are caregivers around. There’s a lot of people with disabilities who are on their own as well. But yeah, it really depends. If my patient wants to have their family involved, then yes, they will be. If they don’t, then this is a safe space for them to discuss things. At the end of the day, it’s confidentiality between my patient and I that I have to honor as well, no matter what [inaudible 00:15:12].

Speaker 2:                        Absolutely. Can you tell us a bit about using sex workers? It’s something that I’ve read about many times and I wondered whether that’s an area to get involved with. Is there that sort of thing happening in Melbourne or Australia at the moment?

Chantelle Otten:             Yeah, absolutely. If you look up Scarlet Alliance, that is a really good group of sex workers who are informed on disabilities as well, and they have so much information on their website, but also they are sex workers who are really communicative with their sexologists that they’re working with or with the caregivers that they’re working with who have booked the appointment for their patient, well, their client I guess. But yeah, of course, sex work and disability is something that we do often facilitate as well if it is wanted. Some patients will come to the clinic and say, “I want to do this, how do I navigate this?” And we work with them to make sure that we can facilitate their needs in a safe and healthy way.

Speaker 2:                        Because I guess that’s something… I know there’s families out there that worry if they enter into this area of allowing their… I say kids, but they’re adults, these adults, to go into that world, I guess that could almost be a safe area where they know, “Okay, when we go here, that’s when we can have sex,” rather than just going out in the world and trying to find their own partners.

Chantelle Otten:             They can find their own partners, but also they can learn how to be sexual, ask for consent, all of those things. Sex workers are brilliant, they’re wonderful people. They treat their clients so well, and they are making sure that if it’s your kid that’s there, that they are safe and secure and that their needs are met. We’re not talking penetration, we’re talking about eroticism, we’re talking about areas of the body that feel good, that might be the ears, that might be the neck, that might be stroking their leg. It doesn’t have to mean such a huge thing. It is really about them experimenting, and I personally think that them learning in such a safe environment with someone who’s able to communicate with them and ask them for consent and teach them about asking for consent as well is super important. And they’re safe. You know where they are and you know they’re protected also from a contraceptive point of view as well.

Speaker 2:                        That’s right, and just touching on the contraception, is that something… For example, even with your sister, how do you make them aware that all this, it’s not just having sex, it’s also protection, and then going to the doctor to make sure they’re okay and perhaps if they did want to have children, is that something you work with families as well?

Chantelle Otten:             I like to educate people on contraception. Making choices is not my prerogative at all. So education is all that I can provide, and then if they need to make some choices, then I refer them on to a doctor that I think is going to be wonderful in navigating that with my patient and their caregivers as well. That’s always going to be a tricky topic as well.

Speaker 2:                        I guess it is for… Yeah, even like you said before, even for our own mainstream adults that are just entering into that area, it’s difficult with them as well, isn’t it?

Chantelle Otten:             Absolutely.

Speaker 2:                        Well, it’s been amazing to have you on because I think it’s a topic that we never want to talk about, but we do, and I know I was embarrassed to actually have you on, and then you asked me, “Where’s Matthew at being a 22 year old,” and he’s not really anywhere because I kind of don’t. But I think what you’ve brought up today is it doesn’t have to be sex, it doesn’t have to be with a partner, it can also be on their own. I read about the use of sex toys on one of your podcasts. I think it’s called Love Honey, is that right?

Chantelle Otten:             Yeah.

Speaker 2:                        Can you briefly talk to us about that?

Chantelle Otten:             Yeah, look, sex toys are there to bring pleasure. They’re there to help you achieve pleasure in different ways, add different varieties to your sex life, whether that be solo or partnered. There’s lubricants on there. There’s also sex toys that are able to be used by people with different abilities as well, that are able to reach certain spots that maybe they wouldn’t be able to reach without a toy. And I think it’s important that everyone learns how to use sex toys. They’re not there as a replacement for anyone. They’re just there to add some fun and pleasure and spice to your sex life, whether that be solo or partnered. So I think if you’ve got a child with a disability, sex toys are wonderful, whether that be a penis stroker that they can use during masturbation, whether that be a clitoral simulator, like a Womanizer to help them achieve an orgasmic experience through clitoral play.

These are all really, really cool things. And often, especially those with intellectual disabilities, they find it really fun. They’ve got some toys to play with, they want to know how to use them, and that’s what we as sexologists can also help facilitate, teaching them this is what it feels like, this is where you can put it, this is the anatomy of your vulva or the anatomy of your genital area. It’s really fun to see them enjoying themselves with these different tools.

Speaker 2:                        Yeah, well Chantelle, it’s been amazing to have you on, and I’ve got so many more questions and I had a list from everybody, and I think that’ll have to be another day. But I want to say thank you and thank you for also sharing your story about your sister, because it’s always nice to hear the personal side to things as well. So I really appreciate that today, and all the best.

Chantelle Otten:             Thank you so much.

Speaker 2:                        And I’m sure we’ll hear from you soon.

Chantelle Otten:             Sounds good. Thank you so much.

Speaker 2:                        Thank you.

Speaker 1:                        Thanks for being part of the Loop Me In Community today and joining our conversation on raising children with disabilities. Join us for the next episode on some of your favorite platforms like Spotify and Apple Podcasts. If you would like to support us, please recommend the Loop Me In podcast to your network of parents, carers, and providers. If you would like us to cover a topic or invite a guest to chat, please email us at contact@loop-me-in.com.au, or go to our website at loop-me-in.com.au. If you’ve got any feedback, please let us know so we can improve and cover issues you want.

And of course, if anything in the podcast today has raised concerns for you, you can contact Beyond Blue on 1-300-224636, or lifeline on 1-31114.