Tony Mantor: Why Not Me the World
Autism is a complex neurodevelopmental condition that affects millions of people worldwide.
It is characterized by difficulties in social interaction, communication, and repetitive behaviors.
Although autism is becoming more widely recognized, there is still a lack of understanding and awareness surrounding the condition.
As a result, many individuals and families affected by autism struggle to find the support and resources they need.
Why Not Me The World podcast aims to bridge that gap by providing valuable information and insights into autism, fostering empathy and understanding, and promoting acceptance and inclusion.
Nashville based Music Producer Tony Mantor explores the remarkable impact his guests make by empowering their voices in spreading awareness about autism and helping break down the barriers of understanding.
Join Mantor and his guests as they delve into the world of autism and mental health to explore topics such as diagnosis, treatment, research, and personal stories.
Together, we can create a more informed and compassionate society for individuals with autism.
Tony Mantor: Why Not Me the World
Rachel Mosley and Eunhee Kim: Unveiling the Intersection of Autism and Menopause – Challenges, Resilience, and Empowering Support Strategies
Imagine discovering a new facet of your identity just as you are navigating the already tumultuous waters of menopause.
That's the reality for many autistic individuals, and today we’re thrilled to have researchers Rachel Mosley and Eunhee Kim share their eye-opening findings on this deeply personal and under-researched topic.
Uni's initial investigation into the high rates of suicidality among autistic people led her to Rachel, and together they embarked on a groundbreaking study funded by the UK organization Henpict.
This episode unpacks the complex interplay between autism and menopause, revealing the unique struggles and resilience of those living through it.
Rachel and Eunhee shed light on how masking and self-image can become particularly challenging during menopause.
Some women only learn about their autism at this stage, adding another layer to their experience.
We discuss vital coping strategies, from seeking information to building supportive communities, while also addressing the more harmful paths some may take, such as self-injury.
Social support from other autistic individuals or empathetic friends and family is highlighted as essential.
Our conversation underscores the importance of tailoring research to meet the real needs of autistic individuals, guided by feedback from an autistic advisory panel.
Rachel's personal journey of discovering her autism later in life adds depth to our discussion, illustrating how this realization reshaped her self-perception and professional focus.
Her story highlights the power of shared experiences and the importance of fostering trust and empathy in research.
By bridging understanding between autistic and neurotypical experiences, especially during complex life stages like menopause, Rachel's work aims to provide crucial information and support.
We wrap up by inviting listeners to engage with us and share their own stories, reinforcing the community spirit that drives our show, "Why Not Me?"
Join us for an episode that promises to enlighten and connect us all through shared understanding and support.
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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)
Welcome to why Not Me, the World? Podcast, hosted by Tony Mantor, broadcasting from Music City, usa, nashville, tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Their stories Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism around the World. Hi, I'm Tony Mantor. Welcome to why Not Me? The World. Today we are joined by Rachel Mosley and her associate, uni Kim. They are here to discuss their findings from studies they've conducted in the UK on autism and menopause. The goal is to promote greater awareness and education about this important subject, so thanks for coming on.
Speaker 2:Thank you so much for inviting us on today With your podcast. We both listened to it and it's amazing.
Speaker 1:Thanks so much. I really appreciate that. So, for those of you that might not know, rachel has been on my podcast before. It was last September and we went on to discuss suicide prevention, because September is Suicide Prevention Month and, of course, suicide prevention within autistic people. So now it's really good to have you both on so that we can talk about another subject that affects females and that would be menopause in their later years. So my first question is to you, yuni Are you autistic as well, or are you just a PhD that's trying to help people?
Speaker 3:Yeah, I'm just a PhD trying to help people.
Speaker 1:I think that's great. So what led you to this chosen path to get into research for autism and, of course, menopause and how they deal with it?
Speaker 3:Well, first of all, I initially thought about the suicidality of autistic people and while I was researching about this population and I found that their health conditions and life transition really plays a crucial role on this, that's how I contacted Rachel first. I actually contacted her directly to talk more about the topic because she was an expert on this. She had some great research on this and she said menopause is one of the many really important factors impacting autistic people to have mood problems and mental health problems that might lead them to suicidal thoughts or behaviors in extreme cases. And that's how I got to look into this topic more thoroughly, more deeply, and she was at the moment launching a project that was this one menopause and autistic people and I was very eager to engage in this topic more in depth. So, yeah, that's how I tried getting this project.
Speaker 1:So, rachel, once Uni had reached out to you and you got a chance to meet her and talk with her, what was your response and how did it progress from there?
Speaker 2:Well, we were very lucky because myself and my colleague, julie Gamble-Turner so she's another researcher at Bournemouth University we'd done the first research studies on autistic experiences of menopause a few years ago and we'd always wanted to do more, but we never had the funding and around about the time uni contacted me, we were having conversations with a very big menopause organization in the UK called Henpict and Henpict said we'll fund a PhD student for you. So we were delighted because it meant that we could extend the research that we'd already started doing on autism and menopause and carry it much further and answer new questions and bring bring someone new into the field and to work with us. So we were thrilled and it was lovely timing that uni happened to contact me and then I said oh, we've got this opportunity coming up yeah, I think that's great.
Speaker 1:I also think it's good to get a younger perspective, because this way the data might be looked at just a little bit differently and maybe some new ideas can be brought up. Did you find that, by you being younger and going into this, that it helped you?
Speaker 3:Yeah, absolutely, because since I am younger, which means I have never experienced menopause, but I will reach there at some point and still await her at some point.
Speaker 3:But since I am younger, what I first felt was we don't really know much about menopause and especially in autistic population, they might be even more challenged or more limited access to those resources and helpful information to take care and look after themselves. They might help themselves when they reach to that point, or even before that, to take care of their own health and well-being. So, as a younger person, I think it's really crucial for not only for those in the menopausal age, but younger people, to know about menopause and people around them, those people who are experiencing menopausal age, but younger people, to know about menopause and people around them, those people who are experiencing menopause. They might be younger or older, but they should also know about menopause to effectively help and support those people which could holistically impact the whole health and well-being. I mean those people around them as well. So, yeah, I think it's quite important for younger people to know about menopause as well.
Speaker 1:So, yeah, I think it's quite important for younger people to know about menopause as well. Okay, so, rachel, you've already done some research on this. So, between the research that you've done and the new research that you're doing, has this opened your eyes in any ways and given you an insight that you might not have expected?
Speaker 2:Yes, so we've conducted a handful of studies so far. Three are published right now and there's a few more coming and, of course, uni's work and what we've found. It has been a huge eye-opener. So when my colleague, julie and I first started looking, thinking about this, there were no papers out there on autistic experiences of menopause and this was surprising because we know that autistic people are more likely to struggle with reproductive transitions like puberty, pregnancy and so forth, and yet nothing.
Speaker 2:So when we did our studies, I think the extent that people were struggling at menopause many people, many autistic people had they didn't know much, they didn't know what to expect. Many people said I thought I was going mad. They used the same phrase again and again, every single person. And we had people I know you're saying about stories and stories are so powerful and we in our research were talking to people about their experiences and from stories we were hearing where people were saying I lost my job, I had to become really highly dependent on my aging and ill parents, I couldn't manage self-care, I attempted suicide. Menopause was life-threatening for me. Another thing that we found quite interesting and startling was that quite a few people discovered they were autistic during menopause Because of course a lot of older women and people assigned female at birth were not diagnosed as children, because traditionally autism has been poorly recognized in people assigned female at birth. So they'd grown up and they'd been just about coping, struggling but coping, and then menopause hit and that sort of derailed them.
Speaker 1:So what age did you find the most significant changes for them?
Speaker 2:Unfortunately we didn't do the kind of study where you could compare them in terms of their ages. We were looking. I think all of our participants were kind of between the ages of 45 and their function. We couldn't do that comparison. But perimenopause typically begins in the kind of mid-40s and what we're really hoping to do in UNI's study is we are hoping to compare people in their age.
Speaker 1:So, uni, you're starting your research now. Did you touch upon any of the people that Rachel had worked with in the past to see how they are coping now? Or is this just a complete new study? How are you handling that?
Speaker 3:Currently we have asked them whether they were really struggling to cope during that time or they are struggling to cope with those symptoms and experiences during the time of menopause, by asking them to complete the coping strategy questionnaire called COPE. So we are trying to take a rough information about whether they are and whether they are really struggling at coping with them and which kinds of coping strategies they're using to try to effectively cope with them, including the denial, acceptance and religion and so on and so forth. Like that, and in the future we are planning to run another qualitative research by using interviews asking more in detail about like how they found their menopausal state and menopausal transition, or how they are currently finding and which coping strategies that they used and how effective that was, and if they had any like unexpected changes during the time that they were trying to, or that they are trying to cope with those experiences related to menopause.
Speaker 1:What are some of the strategies that you find that they've used and have the strategies helped?
Speaker 3:Well, in terms of this study, we have not yet reached to that point because it's a future study.
Speaker 3:It's part of our future study that we are currently planning but, based on the existing literature, they have a lot of different coping strategies to use.
Speaker 3:For example, in a positive side, they use acceptance like it is what it is, but they can try some interventions or other strategies that they could help them to feel better, like physical activity or healthy diet and stuff like that, like trying to have good quality sleep. Although it really depends on individuals and individual positions, a lot of autistic people tend to camouflage or mask themselves throughout their life. Once menopause hits, these can be all collapsed, or maybe slowly, but for a longer time they might really struggle with those things. Maybe slowly, but for a longer time they might really struggle with those things, like those changes in life and feeling less capable of doing things that they have been doing so well. So these kind of things could lead them to have more negative like coping strategies, like denial or maybe self-blame. But this is what this project is really aiming to target not directly, but potentially we could help them add some information or pieces of knowledge how to cope with these struggles during this time.
Speaker 1:Okay. So, Rachel, you've done some research in the past on this, so you brought up the point that some people actually found out during menopause that they were autistic. So did you have direct conversations with some of these people or did you find out how they actually found ways to cope with it? Because now they're actually getting hit from two sides. One is they're starting to go through menopause and the other is now they find they're autistic. So it seems like one side would be pulling from the other side. It's almost like I've heard from those that are ADHD and autistic that they have one side pulling at them and then they have the other side pulling at them, and it's a real struggle. So what did you find there?
Speaker 2:It's a double whammy. What we found in our previous studies was that it really was a double whammy. There were some people who had been kind of masking and coping all of their lives, but they'd always struggled and they'd always had very negative perceptions of themselves. So we had participants who said, you know, my self-image was a beautiful metaphor. Someone who said my self-image was as a kind of broken horse. I thought of myself as a mentally ill person, a failure, all bad things and at menopause struggled so much that her autism became much more obvious since she was diagnosed and it allowed her to really reframe her self-image as a beautiful zebra, not a failed horse.
Speaker 2:And so the kind of things you're talking about, about coping strategies, what we found people tended to do and how they coped in a big way was seeking out information. So we know that autistic people love to kind of research things. They often empower themselves by finding out information about this thing. So about autism, about menopause, and we also found that what autistic people really wanted to help them cope with menopause was they wanted access to other autistic people. So when you're not diagnosed, you cannot find your community because you don't know what you are If you think of yourself as a broken horse, in the words of our participant. You can't find other people like you, whereas when you learn you're autistic, you can find other online communities and you can also find people autistic people who are going through that same life stage as you.
Speaker 1:Now, Yuni brought up coping strategies that she found in her research. What kind of coping strategies did you find in your research? I?
Speaker 2:think the two that really stood out were the finding information and the finding other autistic people. We did find that some people really struggled to cope and so they were drawing on less adaptive coping strategies like self-injury, for instance. Some people were really struggling, but people found that having social support was really important and I think it's great if that can come from other autistic people. But even just having supportive friends and family was also really important.
Speaker 1:How long is this research project going to go on for?
Speaker 3:Well, this is a three-year project.
Speaker 1:Okay, so how does this work? You say a three-year program. So what is year one, year two, year three? Are you looking to focus on something different each of the three years that you're doing this?
Speaker 3:well, currently I finished collecting data for the first study, so I am just at the beginning of analyzing the data, so hopefully I could run the analysis over a month of time and after that I am turning to my second year, like next week. So yeah, it's already second year, so hopefully I start my second project, which is going to be an interview-based study.
Speaker 1:Okay. Have you found in these studies that you went into the program thinking that it would be one way. Then all of a sudden you find out that it's going a completely different direction in the other way?
Speaker 2:I want to just make a quick point about what Tony asked previously. A really important thing with uni studies is that they'll kind of develop from what she finds. So her second study will kind of take whatever comes out of the first and kind of follow on with that. And the other point I wanted to make about that is that another really important element of this work is that we have an autistic advisory panel, and so what we would do, for instance, is we'd see what we find in the first study and we'll take it to them and see what they think is really interesting. And in light of that I just wanted to answer your question about kind of something that was unexpected.
Speaker 2:We had a really good instance of this where we wanted to look at a certain thing in this first study and we took it to our autistic advisory panel.
Speaker 2:We said we're really interested in social support. Is it valuable that autistic people have someone who they can go to the cinema with, who they can go out to dinner with, who they can do x, y and z, all these things with um? What do you think? Do you think this is valuable? And they said actually, no, that's not very important for me. They were saying you know, what's important for me is not that I have someone to go to the cinema with or go out to dinner with, because I can do that by myself. What's important for me is that I know there is someone that I can go to when I'm struggling. So we were kind of going in there thinking, okay, this thing is the relevant thing, you know whether they've got someone they can go to the cinema with. And they told us actually no, that's not what's important. So our advisory panel are just really fantastic and have a long for the ride.
Speaker 1:That's really great to hear. So, rachel, since you've had both autistic and neurotypical people involved in this study, what's one of the more interesting or surprising things that you found on the differences between the way the two cope with it and how they handle it individually?
Speaker 2:That's a great question. I think it's really tricky because we're at that point yet where we don't yet know, because we haven't been able to analyze uni's data and there haven't really been studies that have compared autistic and non-autistic people at menopause. So there isn't really a lot of direct comparison. There's like one study, I think one of the things I find that's quite interesting, which is suggested from the data, is that autistic people are more likely to go into menopause with more mental and physical health conditions.
Speaker 2:And the tricky thing about menopause is that it can exacerbate mental illness and physical illness. It can worsen chronic illnesses like ME, lupus, autoimmune conditions. So if you're going into menopause with more of those health conditions, which autistic people are statistically more likely to do, it makes sense that your experience of menopause might differ. And although we haven't done that comparison yet, it makes sense that experiences of menopause might differ between autistic and non-autistic people because menopause is a neurological transition point. It's not just happening in your ovaries, it affects the brain in a widespread way and so if your brain is different, it makes sense that this transition point that affects your brain is going to affect these slightly different brains in different ways.
Speaker 1:Okay, juni, so now you're doing this research and you're doing the deep dive into it. What are some of the things that you've found? And it doesn't necessarily have to be about the research and the project, but something that you've found about autistic people that you may or may not have known about that came to your attention and kind of made you look at things slightly differently.
Speaker 3:This really let me learn that autistic people are quite vulnerable to this period and I was so surprised that I'd never thought about this topic really seriously before. Menopause can really make autistic people be more vulnerable I'm not really comparing to other groups of people, but like they can be particularly vulnerable and they can really have facilitating time. So what I found here was this project could really help them to have more appropriate and accurate information about menopause and about autism and how to cope with this, how to pass through this period of time. And also I found that this could be really helpful for people around autistic people who might be supporting those people. So, as menopause kids, they might need more help and more help of other people and to help them go through this with better well-being. And this research could be very helpful for those who are taking care of autistic people to know better about menopause, life and autistic people.
Speaker 1:Okay, is there anything that I've missed or questions that I didn't ask that you'd like to address?
Speaker 2:It's not really a question. It's just a point Because listeners might be feeling scared and I don't want anyone to go away from this feeling frightened. If you're autistic and you're thinking, oh my God, menopause is going to be awful, I want to really quickly say that there's a lot of variation. We found in our research studies that some people really struggled and some people had a really easy time and, what's quite important to say, in research like ours, the people who want to participate in research about menopause are typically the ones who've struggled. So it's just important to say that, because we really don't want to frighten anyone, we want to make people aware that it's, you know, it's something important to think about and to you know, make sure that you're empowered with information and you know your sources of support, but we don't want to scare anyone.
Speaker 1:Yeah, exactly, information is the biggest thing and that is what you're trying to bring to them, so that's the most important thing at this point.
Speaker 3:I just want to say that it's not their fault, however they are feeling or going through menopause. It's not their fault. It's just another natural neurological and bodily changes that people go through. So if they are really struggling to it, I really want them to find some support and help around them and I really want to make sure that it's not going to be an end of life but a new beginning of their life. Yeah, I just wanted them to make sure that there's nothing to be devastated by it.
Speaker 1:Yeah, yeah, that's good. Now, Rachel, you're autistic and you found out about it later in life, but you've learned how to deal with it and you've adapted to it throughout your life and now you're doing research to help them. So that's a really good, strong point right there. So you grew up with the lens of being autistic, even though at the time you really didn't know that you was autistic. So then you get diagnosed, find out that you are autistic and now you're living your life as an autistic woman. Has this opened your eyes to a different world than even the one that you grew up, that you knew?
Speaker 2:Definitely, because I think, a bit like the participant I mentioned, I was previously living as a treatment failure. The ideas I had of myself were very, very negative because you can't unrun things very easily, but certainly before you know, you're autistic. You are just a failure. Broken. You have terrible, terrible self-perceptions. Broken, you have terrible, terrible self-conceptions. And so learning there's a word for what you are is incredibly. It wipes the slate clean. In a way, it takes a huge burden away.
Speaker 2:So, yes, it is definitely a different world, because I never knew that other people like me existed and that there was a word for why we struggle. And in terms of just reflecting on what Uni was saying as well, I think this research, I think it opens a lot of people's eyes because, certainly, when we started looking at this, some of our participants commented well, you know, my image of autism was always rain man. No one thinks of autism as a woman in midlife. No one thinks of autism as a woman in midlife, so in her 40s, with a family, with a partner, with a job, people didn't think of autistic people as being in relationships, as being sexual beings or romantic or have children. No one thought about autistic people becoming parents and so actually what we know now is that autistic people, there are many autistic professionals, there's a group for autistic doctors international and autistic psychologists and psychotherapists. So it is a world, yeah.
Speaker 1:Yeah. So that leads me to another question. I would like you to expand a bit on how being autistic as you are helps you in what you're doing for research and how you approach it in the clinical area so that you can get the most out of it that will ultimately benefit as many people as it possibly can.
Speaker 2:I would say that being autistic is very useful.
Speaker 2:We always want to do research in an extremely respectful and humane way and the autistic community has suffered a lot at the hands of researchers, most of whom you know statistically they will be non-autistic, because there are many more non-autistic than autistic people.
Speaker 2:So I think the community feels quite wary of science and researchers and very often out of research is also coming this kind of cure narrative. So I think that being autistic makes it easier sometimes for me to other autistic people in a kind of very open, reassuring, respectful way, though of course I should say that non-autistic researchers also do this and they're also respectful and humane. But I think that being autistic maybe makes it a little bit easier for participants to trust me and in terms of the burden I was talking about, I think I can empathize with them a little bit more. Everyone has their own challenges, so non-autistic people will also have had some of the same experiences that they can empathize with autistic people about. But I think being autistic gives me quite a fast window into what they might be, what autistic participants might be feeling and thinking.
Speaker 1:Right. So the bottom line is that everything that you're doing is to help people by giving information, so that they have the information that you've come up with in documents so they can read and understand and further use to help people. So how has the information that you've collected so far helped you to better understand what these autistic people are going through and ultimately give you the opportunity to come up with some good diagnosis that can actually help them in the future?
Speaker 3:Yeah. So since that was an online questionnaire, online data collection, so I can't give much experience about just my experience interacting with autistic population. But, as Rachel said, I'm so happy to have experience and interacting with these autistic panel members, who were absolutely helpful for improving our questionnaire and while communicating with them and improving our questionnaire for collecting data with them, I found that, as a neurotypical person, I think I could help other neurotypical people understand how autistic people think and how their brain works. I bet not many people would really understand about menopause in a certain level of detail. So, as a neurotypical person, I really hope that and I'm still hoping that this research could help not only autistic people to know and learn about menopause in their life, but also neurotypical people to learn about autistic people.
Speaker 3:So it can be anyone. I mean many of them would have an autistic people around them. They could have their children or friends or siblings autistic, and understanding them is quite important for neurotypical people as well in order to let all of us all together and live happily. Sometimes, engaging with this autistic panel members were really important and very helpful experience to learn how to communicate and how to really work with these people, and it was really important for me to learn that and autistic people were very keen to see the details and this kind of thing really came around all together to understand and expand my knowledge and autistic people in real life.
Speaker 1:Yeah, absolutely, Because ultimately it's the big unknown Even neurotypical people that are going through menopause start to have a really tough time. So you add autism to that scenario and that just compounds it and unfortunately magnifies it to a different level so that they have to take and learn different ways that they can cope with it.
Speaker 2:Yeah, exactly so. People really want information, and so the research we've done so far, I think has helped some people to understand themselves, and I think uni's research will answer many more questions. We really want to understand why people struggle, because when you understand why the mechanisms, it gives you more of a window to think okay, well, how could we help?
Speaker 1:Yes, absolutely. Well, I have to say this has been a tremendous conversation and I really appreciate you taking the time to come on.
Speaker 3:Thank you very much.
Speaker 2:Thank you so much. We're really grateful for the opportunity.
Speaker 1:The pleasure's all mine. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to TonyMantorcom. Thank you about why Not Me? The World, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.