Transcript
Speaker: absolutely no clue that it could affect so many aspects of your body, mind and life. You know, there's nothing to say whether you will or will not have a difficult menopause, and that's one of the big research gaps.
Speaker: So if you're autistic and in menopause, you've potentially got double stigma. In perimenopause, I suddenly found that the shower water started to smell of chemicals.
Speaker: Now, everybody spoke to about this denied it and said this was impossible. I think for women, non-binary um and trans people who um are going to experience menopause, it would be really good if it could be factored into a kind of health check around the age of 40.
Speaker: Hello and welcome to This is Autism, the podcast from the North East Autism Society. My name is Kerry Highcock and I'm the Family Development Manager at the charity. Today we're going to be talking about the menopause and autistic people's experiences of it with Rose Matthews.
Speaker: Rose has a background in health, social work, higher education and criminal justice. Since she found out she was autistic at the age of 58, she has specialised in autism research and has covered a range of subjects, including the menopause.
Speaker: So thank you so much for and coming joining us today, Rose. Can you start by telling us a little bit about yourself? Yes, of course. It's lovely to be here. So I'm Rose, Rose Matthews.
Speaker: I'm 64 years old and I discovered I was autistic five and a half years ago. I'm a partner, parent and grandparent. And before I realised that I was autistic, and my career had unravelled.
Speaker: And one of the benefits of a late diagnosis has been I've been able to rebuild my career. So currently I work part time in university and community libraries, and I'm also very actively involved in autism research and research on neurodivergence more generally.
Speaker: Wonderful. So you're very, very busy. and So and first question, I guess, menopause. Do you think it's still a bit of a taboo topic?
Speaker: It's interesting, you know, because ah menopause has been having a bit of a moment in the media recently. There's lots and lots about menopause and there's menopause chocolate and menopause this and menopause that.
Speaker: But there isn't a very strong evidence base for a lot of work around menopause. And i think the extent to which discussing menopause is or isn't taboo varies according to the context and culture.
Speaker: i think there are opportunity issues too. So take me as an example. I wouldn't have felt at all inhibited discussing menopause. I'm very open about that kind of thing. But I didn't have any close friends or associates to discuss it with.
Speaker: um And I remember watching a very annoying NHS information video on menopause a few years ago and thinking the women featured in it had absolutely nothing in common with me.
Speaker: So this is, I think, one of the issues, whether or not it's taboo, whether or not it's spoken about, we do really need to have a diversity of experience that is available for people to access so that it it resonates with what they're experiencing.
Speaker: Yeah, yeah. So we've got, you know, representation within the media portrayal, if you like. Yeah, yeah, that really makes sense. so why why is it important to talk about menopause?
Speaker: Well, in a sense, I think it's like all the other sort of key transitions like puberty, like pregnancy, like childbirth and all those other things that that so are part of life for some of us who are um AFAB, assigned female at birth.
Speaker: and Knowing what to expect can actually be a huge help in being able to deal with things. So, for for example, periods never used to be discussed. And I remember remember my mother's generation, some little girls would start bleeding and think they were dying because nobody had told them that this could happen.
Speaker: And I think it's a little bit the same with menopause. I would say i found out the hard way what perimenopause could be like. And I only really understood it retrospectively.
Speaker: At the time, i had no idea i was in it. Perimenopause wasn't even a word when I was in perimenopause. People just used the term menopause. And I thought, oh, that is just um night sweats, hot flushes, and heavy bleeding.
Speaker: And it happens in your mid-50s, and that's it. I had no idea that perimenopause could begin as early as it could. And I had absolutely no clue that it could affect so many aspects of your body, mind and life as it could.
Speaker: And I think being prepared is hugely important. Yeah, um absolutely. I would agree. I mean, I'm probably coming up to that age of perimenopause now.
Speaker: So I think preparation will be will be key. And, you know, where you get your credible information from as well is important, isn't it? Because I wonder if. Is there a lot of, and there may not be, but as in the world of autism and neurodivergence, we know there can be a lot of misinformation out there, which is dangerous.
Speaker: Is it the same for topics like menopause, do you think, or not so much? Absolutely. now Now, some of that is to do with commodification and and marketing and and making money, frankly.
Speaker: You know, people are making money out of out of people's desire to to try and help themselves with aspects that are challenging. But I think the other aspect of it is, um you know, there are non-evidence based interventions, treatments and things that, know,
Speaker: you know, may work for some people, but you have to be very, very careful. You know, it's the same with autism, isn't it do you remember the whole camel milk thing? People saying, you know, drink camel milk and, you know, you won't be troubled by your autistic traits. And it's just ridiculous.
Speaker: So, um yeah. And the other thing I just wanted to say was that in knowing what to expect, We also need to alert people to the fact that they may have a very easy and trouble-free transition through menopause.
Speaker: So someone I know who's autistic said to me, well, I know I've been through it because I'm out the other side, but honestly, didn't notice it. Now that is in stark contrast to me, for whom it was a kind of catastrophic crisis.
Speaker: So I think it's really, really important to say Just because you're neurodivergent or autistic, or even if you're not neurodivergent, there's nothing to say whether you will or will not have a difficult menopause. And that's one of the big research gaps.
Speaker: It would be really helpful if we had some way of knowing who is more likely and what factors are more likely to lead to somebody having a difficult menopausal transition.
Speaker: Because if we knew who those people were, we could provide targeted support for them. And then we could reassure people more generally, look, it is perhaps a minority of people who have a difficult menopausal transition.
Speaker: So you can relax. You know, you may not have one. I think, you know, this is the problem. As with everything, if you talk about a subject, the people who are most passionate about talking it about it are often people like me. who've had a difficult time.
Speaker: If I'd had a really, really, really easy perimenopause, I might not have been as interested in researching it because I would have thought, well, actually, what is there to research? I wouldn't have realized quite how important a topic it is.
Speaker: Yeah. And when you were talking there, I know I'm going slightly off on a tangent, but I was thinking about how frequently the experience of menopause may be invalidated or undermined i don't know if that's the right word but I've heard um several times um people say oh they're so menopausal oh they're going through the oh there must be you know it must be the menopause and kind of I think those kind of things aren't very helpful because this can be quite a well a very difficult challenging transition for
Speaker: for for us, can't it? Yeah, I think that. And also I think it's a bit of an insult. you know Don't be so menopausal, like don't be so autistic. It's used as a way of actually um undermining and disrespecting people and stigma. So we're onto stigma right now, aren't we? There's stigma around menopause and being in menopause.
Speaker: There's stigma around autism and being autistic. So if you're autistic, and in menopause, you've potentially got double stigma. And then if you have other intersectional characteristics, like for example, um I don't identify as as female, I identify as non-binary or gender fluid or autogender and so on.
Speaker: So, you know, um there are other, if you're LGBTQIA+, in any sense, you know, you have another potential aspect of stigma if you're black, so if you're from a minoritized ethnic community. so There are lots of reasons why people have very difficult experiences. and The other thing I suppose this leads on to is, for me, rather like when I think about the experience of childbirth, in some respects, childbirth was traumatic. There's no getting away from that. However,
Speaker: It was also a kind of like almost like an out-of-body experience. I felt like I was in a liminal space. I don't know whether that makes sense, but it it was a kind of transcendent kind of spiritual kind of experience. Now, in a curious way, I feel a little that bit that way about menopause, that for me, menopause has been a kind of psychological, spiritual transition.
Speaker: i feel I'm... i've Well, to use the words um of ah one of our participants in in our study, and they talked about stepping into who I fully am. And I would say that at the age of nearly 65, I am finally stepping into who I fully am.
Speaker: And I think that the menopausal transition and the late discovery of autism have both been key factors in that. I can't really say what what's due to what because they happen together I think take away either of those realizations or transitions and I wouldn't be the person that I am now yeah it's it's hard for me to resonate with what you were saying because I'm i'm not autistic and also and I've never had a child but I can kind of get a bit of that perspective what you're what you're what you're what you're trying to say there. And I think when you were talking about, um well, we could lead into masking now, couldn't we? Which is a different topic altogether, but just, you know, as a late diagnosed autistic person, I imagine you've lived much of your life masking and... and
Speaker: Yeah. So we might come back and talk about that another time, Rose, um because it's a whole different topic that needs to be deconstructed, isn't it? Absolutely. and So obviously you've you've you're very passionate about this clearly and you've chose your research around all things menopause.
Speaker: and I guess, why did you choose that specific focus from a research perspective? Well, I kind of chose it, but it also chose me in that I'd been on Twitter and I'd been talking, I'd written a thread about my experience of menopause. And then someone contacted me and said, we're doing a research study. And, you know, would you be interested in getting involved? And that's how it started. So the originators of this big research study that I'm involved in called and Bridging the Silos, the Autistic Menopause Study, are actually in Canada.
Speaker: So they're in um at the Carleton University. Well, Miranda Brady is the lead on the research. She's at Carleton University. And then my colleague, Christine Jenkins, is is um over there, too.
Speaker: So they had established this study. And then I joined the team and got involved in their study. And the brilliant thing about this study is it builds on ah UK study.
Speaker: That one was groundbreaking and it was one of the first ever studies of autistic menopause. and That was um led by my colleagues, and Julie Gamble-Turner and Rachel Mosley at Bournemouth University. so
Speaker: It's wonderful because this new project has has brought us all together and it's called Bridging the Silos and it's fantastic that it's Canada, UK and the s third stage of our research is actually fully international.
Speaker: So it's three parts, focus groups and interviews at the beginning to design a survey. The middle section was amazing. It was inviting poetry, creative writing, anything at all that was um creative a creative representation of experiences of autistic menopause.
Speaker: and Then the third part of the study is actually we completed the survey using the approaches and questions that the the autistic people in the first phase of the study recommended.
Speaker: And we're we're going to be reporting on that soon. And that third stage has involved 560 approximately people. So a lot of people.
Speaker: So it's really, really exciting. So watch this space for three forthcoming, well, one published paper, which is called A Perfect Storm. And then we have one um under review, which is called Stepping Into Who I Fully Am.
Speaker: and then the third paper is just about to be submitted. so There's going to be a lot to read and we're going to work really, really hard to make sure that as well as academic peer-reviewed papers, which are so important for influencing the professional and academic world, that we have a lot of other forms of knowledge that are very accessible to everybody on our on our website.
Speaker: That sounds absolutely wonderful, Rose. And I think we'll take a break there because when we come back, we're going to be talking a little bit about the research paper, A Perfect Storm, and because I did read it and I have some some further questions for you. So we shall see everybody very soon.
Speaker: Hi, while we're on a quick break, I thought I'd tell you a little bit more about the Family Development Service here at the North East Autism Society. The Family Development Services provides support for families pre, during and after diagnosis and includes a variety of services, including our parent and toddler groups, autism hubs, workshops for families, a dedicated enquiry line and our resource site as well, which can be found at at the Family Resource site on the North East Autism Society website.
Speaker: So if you go to ne-as.org.uk and go along to the family development site, you can find all the information there. Hi everybody, welcome back to This Is Autism and we're here today talking to the lovely Rose about all things menopause. and So Rose, I just wanted to touch on the research paper now, a Perfect Storm, and because i did I did read it the other day and it it was wonderful.
Speaker: and And I guess... what I picked up from that is just the amount of challenges I guess the kind of the obvious and the more subtle challenges for autistic people specifically around menopause so could you just touch on that for us you know what what are the particular challenges specific to being autistic and transitioning through the menopause yes of course um and In doing so, I'll i'll draw on sort of a perfect storm, but also the wider literature on neurodivergence and menopause. so
Speaker: Firstly, there is evidence that some autistic and people and ADHDers are especially sensitive to hormonal fluctuations. Although I suppose in my mind, before I knew better, I thought that maybe hormones just gradually tailed off during perimenopause.
Speaker: In fact, if you look at the the profile, it's often very kind of spiky and up and down. So ah hormonal fluctuations can kind of mirror the kind of hormonal roller coaster that some of us feel that we're on. Now, it doesn't affect everybody in the same way. It may not affect some people, but for some of us, that is the case.
Speaker: Now, secondly, um our bodies and our minds can change quite considerably in the course of perimenopause. um and And it can be quite unpredictable and uncontrollable how these changes occur. And that obviously, given that we know that for many autistic people, things being relatively predictable, or at least...
Speaker: A certain amount of stuff being predictable is a way that we calm ourselves, manage anxiety and so on. So that's another one. And then i suspect everybody may be familiar now because it's more spoken about, but there's a thing during menopause called brain fog.
Speaker: There's also something um that some of us who are autistic experience around some cognitive challenges, some auditory processing difficulties and so on. so If you think that you're getting brain fog and you already have these additional challenges, you can see how that would affect you.
Speaker: And the other thing is that emotions can be heightened and emotional regulation can be challenged. Mental health difficulties can become more pronounced. And we know that autistic people have more mental health challenges, partly because of the stigmatization and lack of accommodations that are made for us in society.
Speaker: and also sensory experiences. So in perimenopause, I suddenly found that the shower water started to smell of chemicals. Now, everybody spoke to about this denied it and said this was impossible, but I can tell you it's a fact.
Speaker: And I knew how stressed I was when I had my morning shower as to how strong the chemicals smelt. But the fact that other people kept denying it and telling me that the shower water didn't smell of chemicals was really unhelpful because it definitely did.
Speaker: um Fourthly, as I alluded to earlier, I didn't have a good social support network. I was quite isolated apart from my partner, in immediate family. So I had less opportunities to learn about me menopause informally.
Speaker: And also I had poorer access to healthcare. I've had some quite difficult ah um encounters with healthcare professionals. And so I tended to try and avoid having contact with them.
Speaker: And um so when I did get early symptoms of perimenopause, kind of going to seek advice from a health care clinician was probably a very, very last resort.
Speaker: I didn't feel comfortable. and And the services, frankly, aren't accessible to us because so many of them depend on the sort of 8am phone call and hanging on the line for 20 minutes trying to get an appointment. It's just not necessarily very um accessible.
Speaker: And fifthly, we as autistic people are more likely to have experienced past trauma. um And that may affect how we experience menopause, because I think that I often describe it in my case, I was kind of picking up more and more baggage as my life went on, because each traumatic episode, whether it was a job going wrong or a relationship going wrong or other difficulties I experienced, it was like another bag that I was carrying. So I had this huge load of trauma by the time I was in mid to later life.
Speaker: And then on top of that, you're suddenly trying to deal with menopause. So Lastly, and I already referred to this, you know there are intersectional characteristics that we have. so We might have a co-occurring learning disability as well as being autistic. we might um you know There might be issues to do with our ethnicity or our our our background or our gender identity, all sorts of things. so and Lastly, I know I said that was the last one, but I thought of something else.
Speaker: ah You can see I've got a list because I thought I might forget something vital. If, like me, you get a very late autism diagnosis, as opposed to having known that you were autistic for most of your life,
Speaker: then that can complicate menopause too. Because as I said, you know, for me, I think it's taken me a good four and a half to five years to really process everything, to really feel that I am autistic, to stop doubting myself, not just to feel pride in the sense of saying that I feel pride, but to have pride internalized, like pride is in me.
Speaker: I feel comfortable with myself. I feel confident in myself. And that's taken a lot of work over five and a half years. And if during that five and a half years, you're also going through perimenopause, that's a tough load. It's work.
Speaker: You know, it really is hard work. Not for everybody. I would say that I know autistic people with a late diagnosis who said, They drew it a line under their previous life experiences and looked ahead and moved on with never a backward glance.
Speaker: And I think that's possible for some people. For me, it wasn't because there was a sense in which I always felt that the past trauma was going to catch up with me one day and I didn't want to be taken unawares by it. So I actually had 18 months of psychotherapy with an autistic therapist.
Speaker: And that I think for me, and I'm only speaking for me, this is not something I say would work for everybody or that everybody would need. But for me, that has been a huge part of coming to terms with everything.
Speaker: Some such interesting points there. And, you know, what wow, I've made lots of notes because I think we'd love to have you back. Yeah. Rose, just interesting when we're talking about access to barriers around healthcare it is one that I picked up on because while here we're talking specifically about menopause, I'm thinking wider around women's health here. So one of the things I've been really keen to do for a while now is a campaign, and I don't know what this will look like, but around smear tests for neurodivergent people because I think the level of all of those things that you've just described, the transition, the anxiety, the sensory...
Speaker: the the The all of that, you know, it's never going to be really ah very nice experience having a smear test, us as we probably know. But I think then the layers that that get added to that if you are autistic. So, yeah, I'm i'm going off on a tangent again, but I've just made a note of that because it's something I would love to cover in future episodes because I think there's a lot of work to be done around women's health know and health inequalities and barriers and challenges so I'll come back to you on that one um practically what can help autistic women prepare for menopause
Speaker: Well, again, I have to to to make a huge caveat here. You know, the research that we've done and that others have done isn't at a stage where we can confidently say there is evidence that this works.
Speaker: And also, I'm not a clinician, so I can't give kind of that kind of advice. What I can say is what people have said has worked for them and and so on.
Speaker: So I think, you know, it's this this feeling of of being prepared. So being prepared, i mean, part of the issue here is a societal issue. Thank you. People don't expect to start perimenopause as early. So in I think in our study, the age range was something like 38 to 51, where people felt that that was when they began to to to go into perimenopause. You can see what a wide age range it is.
Speaker: And I think that although you could say, well, it would be a good idea for people to prepare at your age and younger, actually, there's a bit of an issue there. Because if you don't really feel that it's something that's affecting you and you already have a very busy life,
Speaker: Why are you going to take time out of your really, really busy, hectic life to think I must now go and prepare for something that I don't even think is affecting me? So going back to your point about um health services, i think for women, non-binary um and trans people who um are going to experience menopause, it would be really good if it could be factored in into a kind of health check around the age of 40. I mean, that isn't going to catch everybody because some people start earlier, but Around the age of 40 is going to catch most people. Wouldn't it be brilliant if you had a communication just to...
Speaker: in an accessible format, give you information, give you resources, invite you to have a conversation or to have a you know a text-based discussion with somebody just to begin to prepare.
Speaker: Or if there were, how about this? What if there were autistic menopause cafes, you know informal get-togethers where they were facilitated and people could come together and you might have people there who are pre-menopause, in-menopause, post-menopause.
Speaker: Could be fantastic. I love that idea. An autistic menopause cafe. Yeah, there' there's a menopause cafe movement, which is led by the wonderful Rachel Weiss. And I went to one when I was 61 years old.
Speaker: and I'd had real difficulty getting menopause hormonal treatment from my GP. I was always falling out with my GP for reasons I didn't understand before I knew I was autistic. Anyway, in this menopause cafe during lockdown, it was online, it was hosted by university, somebody told me that you can begin menopause hormonal therapy after the age of 60, and I didn't know that.
Speaker: So armed with this information, galvanized by this new insight, I persevered, ah went back to my GP, and I made a case for why I should enabled to try menor menopause hormonal treatment again, because it hadn't worked for me before.
Speaker: And I made a really strong case, and it just so happened, and this was a stroke of luck, the GP I saw is a menopause expert, And it it has had, I mean, it doesn't work for everybody and some people can't use it. So it's not it's not a one size fits all solution.
Speaker: But I have to say menopause hormonal therapy gave me back some of my cognitive function. So I went from being a school crossing patrol person and I worked seven hours a week crossing children backwards and forwards over the road. And that was all I felt capable of doing. And I'm not diminishing that job. It's a really responsible, important job and it involves safety and traffic and children and all of that.
Speaker: It's a wonderful job. But I wasn't fulfilling my full potential as a researcher. I had been a researcher earlier in life and I felt... that that was never going to come back, that I would never have the mental function to be able to deal with complex research data.
Speaker: But um I think partly because of the psychotherapy, partly because... of the menopausal hormonal treatments and probably just the the passage of time and and coming to terms with things, I have got a lot of my mental functioning back. And I'd just like to say to anybody out there who feels like they're going mad, who feels like they'll never be themselves again, who feels like this is the end of the road, there's no hope,
Speaker: you know i I got through a really catastrophic perimenopause, which also included being arrested after a meltdown, being detained in the police cells. We're talking really catastrophic.
Speaker: But because at the time I didn't know I was autistic, I went to my GP as soon as the police let me out of the cells and said, what is going on? Am I going mad? What's the matter with me? Please, please, please help me.
Speaker: and they said, there's nothing we can do. you know um they they They didn't offer me any help with menopause and they didn't recognize I was autistic. So the other thing that I would say to anybody out there where somebody has significant difficulties that are otherwise unexplainable,
Speaker: Always think about the possibility of unrecognized neurodivergence. Just because someone's had a career, just because they're married with children, just because they have their own home, it doesn't mean they're not neurodivergent, which is what my GP seemed to believe.
Speaker: Rose, thank you for kind of sharing that story. I'm sitting here going, oh my goodness, that all really happened and how we need to do better, I think. But one of the things, yeah, that struck me, which is a little bit like...
Speaker: for autistic people, neurodivergent people, is finding your tribe. I always talk about finding your tribe. So going back to the menopause cafe, you're in a community there, whether online or offline or in person, however we want to do it.
Speaker: You've got a community of people who are in a similar situation so but from a similar neurology. And I always feel there's something lovely. When I do groups with autistic young people, getting them all together, it's just wonderful because it's like,
Speaker: you can be yourself, you you can drop the mask a little bit or altogether if you feel safe to do so, you know, so yeah, love that, and so before we finish, and what's next for you, Rose, because I know you're super duper busy and you're probably doing lots of other wonderful things, but what's your plan, if you have one, you don't have to have
Speaker: Well, the interesting thing is, Kerry, that yes, I am busy, super busy, but also I'm not that busy because I actually, since I realized I'm autistic, factor in ah lot of recovery time, a lot of downtime.
Speaker: i went to London to do a workshop Sunday, Monday, but on Sunday morning I was on the beach with my dogs and I was just walking and relaxing. so i I am really, really investing heavily in in in a radical form of self-care where where I'm unapologetic about my needs. And i really see them as needs.
Speaker: These are not sort of like, oh, I just like this or like that. I need these things. So in terms of of where I'm going next, my next subject is is is um for research is death, dying and the end of life.
Speaker: So menopause is a key transition. But also, so is death dying and the end of life. And it's one that's hugely neglected in terms of neurodivergent people because,
Speaker: Those of us who are older, like most of us are still unrecognized and undiagnosed. So anything to do with later life is is very neglected. And if you think about the issues like dying in our society is quite medicalized.
Speaker: So if you think about the health care issues, then of course, they're going to affect things like palliative care. And one last thing I want to get everybody to look up. is the work that Autistic Doctors International have been doing around accessing healthcare. care And they have a fantastic model called SPACE, which is S-P-A-C-E.
Speaker: And i really, really love this model because it it describes perfectly how we can support and assist autistic people. um It's about sensory needs, predictability, acceptance.
Speaker: communication and empathy. And in terms of space, we need to think about the physical space we give people, the processing space we give people, people may need more time just to process what you're saying to them, and emotional space.
Speaker: um And menopause can create additional challenges. And I think that the space model is really, really wonderful for looking at that. And I'm going to be using the space model to look at death, dying and the end of life to see how that might look, for example, in a hospice or palliative care situation.
Speaker: Because Unlike childbirth, where you can have a terrible experience but go on to have a better experience, our experience of dying is going to be one experience. And quite frankly, I already feel some anxiety about how I will experience the end of life, because during childbirth, I got told off a lot.
Speaker: And I don't want to be told off by clinicians as I'm dying. I want to leave the world peacefully in a relaxed way. And I'm thinking of trying to find um an autistic doula for dying.
Speaker: So doulas are people who sometimes support people through childbirth, but they're also doulas who support people through the process of dying. So I'm very interested in all aspects of death, dying and the end of life. And that's what's going to be coming next in the form of a book and I hope eventually PhD.
Speaker: Wonderful. Wonderful. what Thoughtful. words to to kind of end that that this podcast on i kind of feel like i want to continue the discussion but i think we'll come back to that topic when you've done a little bit more around it so um rose honestly thank you You can also follow the Northeast Autism Society on Facebook, Twitter, Instagram, or LinkedIn.
Speaker: The podcast, This Is Autism, comes out every month and you can subscribe on Apple Podcasts, Google, or Spotify so you never miss an episode. So bye for now and thank you so, so much.
