Menopause & Autism in the Workplace

I saw a few of you in the chat are new to Skill Sessions. So this is your first event. Welcome! Thank you so much for joining us. We’ve been running these webinars now, these free online events for over a year, and there’s now a community of over 1,800 of you, which is truly incredible. So thank you for being part of it. The objective of these events is to bring you experts and speakers on a range of topics around inclusion and neurodiversity, excuse me, in the workplace. So you can always find the latest events on the CareScribe website, or by following LinkedIn, we share quite a lot of content on there. And we also have all of our past event recordings available for you to watch back or to share with your peers at a time that suits you. There’s also summaries and additional resources to explore as well. So I would encourage you to go and visit the CareScribe website. In fact, I think a member of my team is dropping some links into the chat for you right now.

So I mentioned, CareScribe, who are we? Well, we’re the organization that makes Skill Sessions happen. We’re an award-winning software company in Bristol and we create assistive technology to help people who are divergent, or who have disabilities to be more productive and confident in their work or their studies. So we have two products. The first being Caption.Ed, which is note taking captioning software, which helps people’s capture and comprehend the piles of information which gets thrown at them, either at work or in education. And we have TalkType, which is highly accurate, lightning, fast dictation software, which works with Mac, Windows, Chromebook, and on mobile as well.

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Now, before I introduce you to Deborah, I just want to remind you some of the key points from the video, which you will have watched at the start of the session if you are able to join us straight from off. So just want to make sure that you’re getting the most from Skill Sessions event today. We’ll send out a survey after the webinar, where you can let us know how you found today’s session, and you can also request a certificate of attendance.

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Now, before I introduce Deborah, I want to talk to you a little bit about Neurobox. So Neurobox are a leading workplace adjustments provider. They’re based in the UK and they’re dedicated to fostering inclusive and accessible work environments for disabled and neurodivergent individuals. They work with organizations and employees to create awareness, super important, to improve wellbeing, and to break down barriers within the workplace through their tailored end-to-end support programs. And I’m sure that you’ll hear a little bit more about Neurobox, and the fantastic things that they do from Deborah in the session.

 

So that is enough from me. I’m going to leave you in Deborah’s very capable hands as she shares with us some case studies and some real-life stories of the relationship between menopause and neurodiversity. So, Deborah, over to you.

 

Deborah Leveroy: Thank you very much, Claire. I’m just starting my video. I’m really excited to be here. A big fan of the Skill Sessions, both myself and my colleagues at Neurobox. So yeah, really pleased to be here and to share this overview of the intersection of menopause and autism, drawing on existing research, of course, and some fictional narratives, and lived experiences. It’s not a definitive guide, by any means. It’s more of a starting point for further exploration and also conversation with you guys. So thank you for joining me today and I really welcome your thoughts and for us to have this conversation.

 

So I’m going to be talking about, a little bit about the context of autism in terms of diagnosis rates and around age and gender, and providing a bit of a summary overview of the current research into autism and the perimenopause, menopause face of life. Exploring some fictionalized narratives and looking at what barriers to support people experience both in the healthcare system and also in the workplace before ending by looking at and supporting the workplace, and also beyond the workplace of course.

But first, I just want to provide a brief overview of key terms and also terms of reference I’ll be using in this talk. As Claire said, everybody’s different and there’s no kind of one size, one experience that fits all. But I will try and kind of encapsulate some of these kind of key terms or things we’re going to be exploring in our time together.

 

So autism, as we’ve said, it is a highly visualized experience, it shapes how we communicate, how we experience and how we interact with the world.

And whilst everyone is different, some characteristics might include intense sensory sensibility and emotional regulation challenges, difficulties with aspects of verbal and social communication. Really good attention to detail, original thinking, and, of course, subject mastery.

 

Now the menopause is defined as when a person has had no periods for one year or more and the perimenopause is the phase leading up to the menopause and starts when symptoms begin, which can be anytime up to 10 years before period stop.

Now symptoms vary, but some examples can be brain fog, short-term memory difficulties, fatigue, loss of confidence, and difficulties with sleep to name but a few. And of course, it’s important to consider menopause as an intersectional experience. I know my colleague, Elizabeth, has joined the Skill Sessions. Previously to talk about the interceptional aspects of neurodivergent. So if you haven’t seen that video, I’d really recommend that you have a look at it, but yeah, to really consider obviously an individual’s disability, gender, identity, sex, amongst other things, such as culture, geography, ethnicity, and also socio-economic status.

 

And of course, we can’t address the autistic menopause experience without mentioning gender fluidity, which we know is highly common amongst the autistic community. It’s a really great piece of research by Kristensen and Broome. They did a 2015 study at the papers called Autistic Traits in an Internet sample of gender variant UK adults. I will send out these references at the end in the post show email, so you’ll have all those things if you want to explore a little bit further, because there’s some really interesting work out there.

 

We know that menopause is generally talked about as something that only affects cisgender women, so whose gender identity corresponds to the sex they were assigned at birth, but we know that, of course, menopause happens to people of differing genders and those in the trans and non-binary community. I’ll be referring to people who experience menopause where I can. When I’m citing research, I’ll refer to the participants gender identity if that information is available.

 

And lastly, age. So we know that the average age of person that experiences menopause in the UK is 51 and it’s different in other countries and cultures. Some people experience early or premature menopause and they can experience menopause at any point from the teenagers years onwards.

 

So some context around autism. So we know that there’s been an increase in cases of autism, adult diagnosis, so between 1998 and 2018 there was a whopping 787 percentage increase in diagnostics. Now these rates of adults diagnosis increase the most compared with other age bands. Adult autism assessment services were only made statutory in the UK in 2009.

 

Now, despite this increase, there still remains chronic underdiagnosis. It’s estimated that anywhere between 250 to possibly 600,000 people over the age of 50 in the UK are currently undiagnosed. We know that far few females historically have been diagnosed with autism, the males and since the 1990s, the approximate ratio was thought to be one female in every four males. So why is this? Where there are several well publicized potentials theories or reasons for this. We know that there’s been a gender bias in diagnostic criteria. That female children, and also adult women, are more likely to camouflage or mask differences. And also the prevalence of the extreme male brain theory has unintentionally created an association of autism as a male experience. But despite this under diagnosis, current estimates suggest that for every 1.8 autistic male there is one female, but what do we know about the autistic menopausal experience.

The answer is, not a great deal. There’s a lack of research into autism and aging in general. There’s a lack of will by funders to invest in aging related autism research. But some questions that are being considered by researchers are around, how does autism shape a person’s experience of menopause? What are the cognitive and physical challenges around this time and what are the social barriers impacting menopausal people? What support is available in the workplace and in healthcare settings? And also, what are the barriers to accessing support in the workplace, and also in healthcare settings?

When we’re thinking about this subject, it’s really important to consider the physical health across the lifecycle, which includes reproductive milestones because of both lifestyle, and of course, the effects of hormones, pregnancy, childbirth, and also menopause. So these areas have been again historically neglected in autism research, but the research that does exist tells us that the autistic menstrual cycle can result in increased emotions and challenges with emotional self-regulation. For example, the ability to calm oneself down, increased executive functioning so finding it difficult to focus, for example. And also excessive menstruation symptoms, so including unusually painful periods and heavy menstrual bleeding. But what is the experience of autistic people specifically, during the parent menopause and menopausal phase of life?

So current thinking, there’s a research gap into the experiences of autism during the perimenopause phase of life, but a number of researches are looking to close this gap. So in a recent study by Groenman and colleagues, where all 60 participants identified as cisgender women, they found that the participants, experienced more menopausal complaints than nonautistic cisgender women.

 

Now these complaints included psychological aspects, such as depression and also somatic ones, such as headaches, joint and muscle aches. The autistic women stated that the higher their menopausal symptoms, the increase frequency and challenges related to their autism. So what is the reason for this?

 

So some research has suggested that there’s a difference in hormone or changes in autistic people overall and this might be the cause of increased menopausal complaints. Overall high levels of sensory input mean that some autistic people might be more sensitive to bodily changes and sensations during the perimenopause and menopause stages. But let’s connect the research back to the individual’s experience.

 

So I’d like to introduce you to Martha, who is 47. She is a sales manager and lives in Woking. So this is a fictional persona or narrative based on multiple accounts of lived experiences. So Martha tells us, “Since childhood, I’ve felt a need to be in control and understand what’s happening next. As a kid, I would drive my mom mad, asking, you know, what are we doing today, tomorrow, this afternoon? As a teen and young adult, this developed into a highly organized diary system complete with Post-it notes and a color-coded diary and a structured and predictable working week.”

 

“One of the biggest challenges I face today as I experience perimenopause is change. Gone are the days of regular predictable periods, of being able to plan and anticipate what was coming around the corner. Suddenly, I don’t recognize my body anymore. It’s not playing by the rules. It’s become unpredictable and unrecognizable.”

“One week I’ll be fine, and the next I’ll have a whole week of 4:00 A.M. night sweats coupled with palpitations. Other weeks I’ll feel completely drained by our regular team meeting at work and I’ve noticed that my new, unpredictable life has heightened my pre-existing anxiety. And I now have greater difficulty regulating these emotions.”

 

“My GP has explained that the drop in Progesterone during the perimenopause can lead to heightened stress and anxiety. One of my unhealthy coping mechanisms is food. I’ve always been a foodie, but since these changes began, I’ve started eating more for comfort rather than for pleasure or necessity. Eating for comfort soothes me in the short-term, and I guess it’s a form of stimming or self-soothing. But the resulting weight gain and the sluggish feelings make me feel even more out of step with my body.”

 

“I’ve recently began working with a strategy coach to developing healthy coping strategies to explore the impact of perimenopause on my autism. We’ve put in place small routines into my day to break things down, and to make things more manageable. We’ve worked on breathing and mindful strategies to counter some of the physical and psychological challenges. And we’re looking at ways to manage my energy levels and strategies to improve my thinking skills and memory.”

 

“Part of the work is recognizing that I’m going through a transitionary stage in life and that I can’t predict or control, and that that is okay. However, I’m starting to feel that I’m developing some valuable new tools to help me navigate these new experiences and hopefully come out of it with increased self-awareness and resilience.”

 

So there are several key themes running through Martha’s experience to pull out. So as a child, her need for control, and to know what was happening next. As an adult, the comfort she took in the predictability of her monthly cycle. The acute feeling of a loss of control once perimenopause symptoms began. The body becoming something other and outside of her embodied experience so she no longer relates to it as being hers in some way. And increasing anxiety, which we know is a core symptom of perimenopause. The benefits of support, and in this case, from her coach. Developing, helpful coping strategies and lastly, finding a degree of acceptance within this new normal.

 

For the second fictional narrative we meet is from Serena. Serena tells us that she was really resistant to go to see her doctor, as she’d had a really bad experience with healthcare professionals when she was seeking her autism diagnosis. And this is an experience that’s born out in the research. It’s a really great paper by Moseley, Druce and Turner-Cobb entitled, when my autism broke, in 2020, that again I’ll send you some links to in the post show email.

 

So Serena finds that, you know, communicating with her GP is really challenging, making these appointments, explain her experiences and her needs to different people. She already had these executive functioning difficulties and social communication difficulties, which were now made worse by the perimenopause. So most of these research suggests that autistic individuals might have more difficulty expressing their experience of menopause and thus have more difficulties articulating their need for support.

So Serena was uncertain about what would happen once she went to see the doctor, what would be the sort of care pathway, and of course, this uncertainty caused her increasing feelings of anxiety. Serena found that her heightened sensory sensibility to light and sound was made worse at the time and a piece of research by Bonete finds that some may experience acute, or have an acute awareness of kind of physical and sensory sensations, such as pain, heart rate, and also breathing, et cetera.

 

So Serena’s existing mental health and emotional regulation challenges were exacerbated at this time so as we’ve said and the existing strategies that she had put in place were no longer working. Serena had a lack of a strong female network, a history of patchy friendships. She doesn’t feel she identifies with many women, and unfortunately, as a result, of course, she feels isolated. In the workplace she finds the symptoms unbearable. She finds that it begins to impact her ability to do her job. She felt she couldn’t tell people what was going on and so, she leaves the workplace.

 

Now, Serena isn’t the only one to leave the workplace due to symptoms and a lack of support. Research by the Fawcett Society in 2022 found that one in 10 women who have been employed during the menopause have left work due to menopause symptoms. So mapped onto the UK population, that would represent an estimated 333,000 women leaving their jobs due to the menopause.

 

Now this was a survey of just over 4,000 UK cisgender women aged 45 to 55. Within the methodology of the report, I would encourage you to go and have a look at it. It does acknowledge that it does not include in the sample those experiencing early menopause, or those in the trans and nonbinary community.

 

Now 8 in 10, in this study, said that their employee hadn’t shared information, haven’t trained staff and hadn’t put in place a menopause absence policy. 45% haven’t approached their GP for various reasons, and 3 in 10 had seen delays in diagnosis of menopause. Now this is interesting. Disabled women are affected more by menopause symptoms than non-disabled women, and they found that 22% said that they had left jobs due to menopause symptoms. 22% of disabled women compared to 9% of non-disabled women.

 

So we find a variety of barriers, which are seen in the research, and also within the fictional narratives and lived experiences. The previous experience of medical professionals obtaining that autistic diagnosis plays into then the menopause experience of diagnosis. The cognitive difficulties that we explored with Serena, those existing communication and executive functioning difficulties becoming exacerbated by perimenopause, and it meaning that it can be difficult to advocate for oneself.

 

A lack of network, both inside and out of work and, excuse me, organizational barriers, so lack of flexible working arrangements, lack of policy and processes and, of course, attitudinal barriers. So the stigma that surrounds menopause and the lack of awareness from employers about the impact of the menopause on individuals.

 

In terms of the legal position, it’s quite interesting because the menopause is not a protected characteristic under the Equality Act 2010. People experiencing menopause symptoms may be protected from direct and indirect discrimination, as well as harassment and victimization on the grounds of age and sex and disability.

 

A recent case law, this was Davis versus a Scottish Courts has found that some people experiencing menopause may be considered disabled under the Equality Act. And, of course, in such cases the employer has a duty to make reasonable adjustments. However, when we’re talking about the autistic and menopausal experience, an autistic person is likely to reach the threshold for disability under the terms of the Equality Act 2010. But under health and safety legislation, employers also have a duty to conduct a workplace, risk assessment for those experiencing menopause.

 

So for anyone who relates to this experience, here are some suggested strategies and support options to explore. So the first thing is around preparing appointments, so these might be medical appointments, but it could also be a meeting with a manager in the workplace.

 

So we would suggest that it would be good practice to mitigate those challenges as much as possible with executive functioning skills by preparing. So really sit down and think about what you want to say, create a list of symptoms, and also the frequency, duration of those symptoms, the impact on your personal life and also in your work. And write a list of questions that you want to ask that person, so that you go into that meeting on the front foot with questions that you want answering and crucially do your research as much as possible.

 

The next thing is support networks. So do you have a friend, a chaperone that can come with you to any medical appointments or a body in the workplace? This can be really useful, because, of course, it’s support, but it’s also someone that is there to help you in terms of making notes, or just someone that’s there as a kind of sense check person after the event.

 

Is there an employee network or an online group you can join? Menopause cafes are springing up all over, and there should be hopefully one in your local area. Is there any support that you can access via the workplace? This might be through the employee assistance program, counseling, some specialized menopause apps, those kinds of things.

 

Now in the workplace, requesting adjustments, employers could provide, some examples, changes to working hours, so this would be flexible working arrangements, compressed hours, staggered starts, finishes, offering part-time work or work from home. The actual workspace itself employers could potentially provide a fan and allow colleagues to book desks near windows, ensure colleagues have easy access to the bathroom, and are able to take breaks as required, provide a quiet area to work. And if there’s a well-being room, ensure that colleagues know about it, and that they can use it.

 

Facilitating regular breaks and opportunities to take medication and understanding if someone needs to go home. Clothes, so for those of us that wear a uniform as part of our job, ensuring that the colleagues feel able to wear comfortable clothes and providing occupational health services and also a DSE risk assessment.

 

What equipment could be beneficial to support in some of the executive functioning challenges? I’m thinking around assisted technology for example. Access to work, so this is a government funded scheme. My colleague, Mark, came and talked to the community a few months ago. It’s a fantastic scheme, which can recommend and support with the cost of adjustments such as coaching and any specialized equipment.

 

One of the recommendations that can come out of a workplace needs assessment whether that’s through access to work or through a private workplace needs assessment is a strategy coach, and that was the experience with Martha, who worked with a coach to develop strategies, to mitigate some of these challenges around executive functioning skills and also confidence. But it can also be a really good tool to develop self-advocacy skills in the workplace and we will send you after our talk today, a self-advocacy template. This is a series of reflective questions that can be really beneficial and really helping us to work through to articulate essentially our strengths, our challenges, any helpful strategies and any support needs that you may need in the workplace. So it’s quite nice when you’re thinking about how to approach a manager to use this as a way to kind of guide that conversation.

 

Some resources and signposting, again, I’ll send these in the email at the end of the session. Firstly, Bridging the Silos, AutisticMenopause.com. This is a project currently ongoing, which asks how autistic people experience menopause, and how they can better access information, services, and supports that might help them. Science On The Spectrum, Dr. Rachel Moseley that I’ve referenced throughout. This is a fantastic autistic researcher and her research focuses on the understanding the challenges faced by autistic people, particularly around mental health.

 

The Knowledge is a great book by Dr. Arif. She’s a GP. The book encompasses all experiences, so including the perspectives of women of color, people of all abilities and cultures and of course, the transgender community. And lastly, the National Autistic Society have just produced new guidance on menopause and autism, and that is out now on the website.

 

You will get these slides in advance, and as part of that you will get my enormous list of references, which I would not necessarily expect you want to go through, but you do have them there if you want to have a look.

 

So thank you so much, really appreciate you listening and really keen to hear your thoughts and questions. Thank you.

 

Claire Dibben: Hi, Deborah! Thank you. Can I just check? Can you see me? You may want to stop sharing your screen, and then we can — There we go, lovely.

 

Deborah Leveroy: Yes, hi!

 

Claire Dibben: Thank you very much. Thank you so much for that. Wow! I’ve never seen such a well-resourced talk at Skill Session, but I expect nothing less. Thank you so much. We’re getting some lovelies of comments and shared experiences in the chat as well, which I just wanted to share one that’s here. So someone’s saying that they went into perimenopause, and despite HRT felt completely overwhelmed with everything. And then, sometime later, they ended up being diagnosed with autism, and ADHD combined. That’s pretty interesting at 56 years old. So clearly not an uncommon experience for people especially related to the things that you talked through Deborah.

 

We’ve got a lovely chunk of time to really get stuck into some questions here, so we’ll encourage everyone, if you have a question for Dr. Deborah Leveroy, to just pop it in the Q&A section at the bottom of the chat. There was a couple of stats that stuck out to me, Deborah, actually which I wrote down. So you mentioned that one in 10 women had left the workplace due to menopause symptoms, which was approximately 333,000 women in the UK and that’s a huge number. And if you think about the impact that loss for businesses and you know, if actually, we could just better support people that are experiencing the menopause in the workplace just if you put yourself a business leader hat on so that the business impact that that can happen just providing those support and adjustments as you’ve discussed is really powerful. So yeah, that’s fascinating. Thank you very much.

 

Right. We will get stuck into some questions now. So I have one for you, Deborah, which is, so spent a lot of time talking about women on the call. And the question here is, how can I encourage men or people who identify as male to be a menopause ally and join our ERG and sort of raise the profile of menopause in the workplace?

 

Deborah Leveroy: That’s yeah, interesting, isn’t it? I guess there’s the question around, how do you normalize that conversation so it’s not just about, you know, that menopause happens to a certain group of people, but that it happens to all of us? So whether we’re experiencing ourselves personally or it’s a partner, or it’s a friend, you know. So I think there’s some workaround kind of normalizing that conversation and kind of breaking down the kind of us and them narrative that this is something that only happens to certain people. So really trying to make it relatable, you know, to everybody.

 

I know that NHS inform has a really good resource around how to support someone going through the menopause, which is from the perspective of the partner and that, yeah provides kind of advice for partners on how to support someone going through the menopause. So I’d recommend kind of looking it up, if that’s you. And then, you know, also there’s been some talk relatively recently around the male menopause, which is a real thing as well. And so, we’re talking about menopause in relation to women, but there is a male menopause, and so we all get to a certain period of life where things change, and so as I said, maybe that’s part of also the conversation is that it’s menopause in whatever it happens to all of us in some way.

 

It might be also in terms of like ERGs that we think about the ERGs working much more inter-sectionally so rather than in kind of silos. But if there is a, for example, neurodiversity network and a menopause network and other networks that you start kind of working together so that you’re bringing more people into that conversation as well. Yeah.

 

Claire Dibben: Nice. Thank you, Deborah. Have another one for you, which is for people on the call who are line managers. They’re managing a team. They’re managing an individual. How can they have a wellbeing conversation with that team member? So how do you kick off that conversation with that person?

 

Deborah Leveroy: Yeah. So I think that it’s important that you are having kind of regular wellbeing conversations, anyway, so that any kind of one to ones you’re having aren’t just about work, but it’s about how that person is. And therefore, one would sort of hope that any kind of, I guess menopause related challenges would come up from that conversation. And thinking about, I guess if you’re preparing potentially for that conversation, not making assumptions, yes, it might be menopause, but it might not be. And if you are going, or have gone through menopause yourself, not making assumptions that it’s obviously going to be the same for this person, as well. And just trying to I guess destigmatize that conversation in the sense that acknowledging that it is a normal stage of life. Showing as you would do in any conversation that you’re actively engaged, and you’re showing active, listening.

 

And that you see that person who’s sitting in front of you, not necessarily the issue, menopause, autism, whatever, but you’re actually listening to what that person says. I’m really just supporting them to identify what support is available both inside work, but potentially you know what support might be available in the community and crucially, I think making sure that you’re following up with that person. If they’ve got to the point of sharing with you, and you’ve had that conversation then ensuring that you follow up with them, and see kind of what’s happened since.

 

So, yeah, those are my thoughts around that conversation. I appreciate it can be a difficult one, both for the line manager and for that individual as well.

 

Claire Dibben: And what you mentioned there around wellbeing, that’s the sort of theme that has come up quite a few times across the Skill Sessions webinars that we’ve had over the last year. And from what I’ve noticed through these conversations and all the brilliant speakers that we’ve had joining us for these events is that really creating psychological safe space for those conversations to take place is to do with workplace culture, and also like the leadership at the top, and like making that a priority, so that I know a big part of Neurobox is work and part of the work that CareScribe does with the events that we create in the content that we write is about like neuro-inclusion and awareness. And just getting people to think and to operate in that way. Is that a view that you share, Deborah?

 

Deborah Leveroy: Yeah, absolutely. I think it kind of comes down to I guess kindness, or empathy, as in not making assumptions, just being open to people feeling that they can come in and talk, I think. And yeah, I think that you’re right. That does come from the top and it kind of comes from that kind of culture, and whether that is kind of, I guess disseminated through a body system, or senior leaders talking about their experiences. There’s so many kind of examples of that in practice, because I think that often we talk about psychological safety, but we don’t really unpick what that means, because it’s a great term. But it’s about thinking about what’s that kind of mean on the ground, which is interesting in itself, I think.

 

Claire Dibben: Yeah, I’m going to have a look at the Q&A just to pull out some more questions for you, but just in case, you’re not keeping an eye on the comments from the chat. So we’ve got people sharing their experiences, Deborah. We have someone who says they are a ward manager who’s going through the menopause personally, and they have staff with no diverse health concerns. And they said, this was just really helpful, especially for helping them formulate better supportive risk assessments to help people in the team.

 

Yeah. Lots of really wonderful comments from people, so such a great presentation. Any advice on how to advocate for yourself when approaching your GP? I’m not sure if that’s anything that you can sort of talk around.

 

Deborah Leveroy: I guess some of the things I mentioned around making sure that you prepare beforehand. Doctors at the best of times sometimes can be intimidating. It can be hard to get a doctor’s appointment, so by the time you get in front of one, you can be exacerbated and stressed and upset, and bring all that kind of previous experience from other things to that room. So I think, in terms of advocating for yourself, making sure that you prepare in terms of you’ve got a list of symptoms of how it’s impacting you. Bring somebody with you also if you feel that you — It might be a partner that can say, “Yes, this is happening, I can see that my partner’s really struggling in this way, in this way, in this way.”

 

I think, also, just be really clear about what you want as the outcome. So we know that doctors are really busy and stressed and of course, they’re brilliant. I’ve just realized that obviously Richard is a doctor, so I’m not badmouthing GP, sorry. But I mean like help them like by helping you. So do the research beforehand. That book that I’ll put in the resources, The Knowledge, is really, really good. There isn’t much. There’s knowledge out there, but it’s just you just have to look for it. So obviously, if this presentation helps you to just not have to search through all the stuff that’s out there, then that’s then that’s good. But yeah, just go with a plan of what I think you want out of it and don’t be dissuaded. Just I’d say, try and stick with your instincts.

 

And of course, they may not have the knowledge. I mean, from my understanding, not all GPs have menopause specialists anyway. There are certain menopause specialists within every, I think surgery, but not everyone is. And then, when you layer on top of that autism, or dyslexia, or whatever that you’re coming in with, they may not have an appreciation of that as well. That’s why I like this book, The Knowledge, because she does have — It’s not very long. There’s a very small chapter around autism and the menopause ways, but it’s a good acknowledgement of this is a real thing that is happening and is out there, and all people are talking about. So, yeah, that’s my thoughts.

Claire Dibben: Thank you. Okay, some questions, which we’ve had dropped into the Q&A. So at the start of your presentation, Deborah, you have the image of Melanie Sykes, and they’ve said, “I noticed that Melanie Sykes is used as an example of someone with the late diagnosis,” to their understanding, to this person’s understanding, she is self-diagnosed and they wondered what your thoughts were on self-diagnosis.

 

Deborah Leveroy: I guess, self-diagnosis in terms of the autism. That’s really good, actually interesting. I didn’t know if she’s self-diagnosed or she had a formal diagnosis. I don’t actually know, but thanks for picking it up. I’ll explore that. I think that whatever route — I looked at the Skill Session that was on last, I think it was in September, which was around the different types of diagnosis and identity. Whether you have a formal diagnosis of autism or you identify you, we know that there’s obviously barriers to accessing diagnostics.

 

I think that essentially in terms of the workplace, whether you have a formal diagnosis or not, that shouldn’t impede your ability to request adjustments. And any inclusive workplace she would or should be, actively providing adjustments and not asking you for a diagnostic assessment. So I mean, in terms of your decision whether to go down the route of having a formal diagnosis or not, of course, that’s completely personal and I think that there are benefits and also challenges with that diagnostic process. But, yeah, I wouldn’t want to say [crosstalk – 00:48:05].

 

Claire Dibben: No cool, yeah, thank you for responding to that question that way, that is helpful, and for the person that asked, put that question in the chat, as Deborah mentioned, the last event we had in September, [inaudible – 00:48:19], they talked the realities of misdiagnosis and diagnoses. So you may want to, if you head to the CareScribe website as I said at the start, you may want to sort of peruse that material, and just glean a bit more information from that if you find that helpful.

 

Okay. So another upvoted question here for you, Deborah is, are you saying that ASD women have heavier bleeding than neurotypical women? Or is it that ASD women’s experience of having a bleeding is more difficult for these women? Do you want me to repeat that question?

 

Deborah Leveroy: Wow, that is something.

 

Claire Dibben: It’s yeah.

 

Deborah Leveroy: I mean, you can repeat it. I’m not sure if I can answer it, whether you repeat it or not. That’s a really good question. What I will do is I will refer you to the article that does give a bit more detail that we’ll be able to clarify that, because I just know that in the moment now, I won’t be able to provide that, and I certainly don’t be on the hoof and guess. So I know what study that’s from and what I’ll do is in the follow up email, I’ll provide you with signposting about which article you should look out for that because that’s a really, really good question. Also, what I’ll do is I’ll look at it again and make sure that I’m clear about it next time I deliver this talk as well. So thank you.

Claire Dibben: No worries. Maybe if a member of the CareScribe webinar team, if you can copy and paste that question just so that we’ve got a note of it from the chat for Deborah for afterwards that’d be great. Okay, we have a question here from an anonymous attendee. And they say, “I’ve struggled with perimenopause for a few years now, and requested a demotion at work due to struggling with my senior position. This was implemented last month, after a nine-month delay. In that time, I was diagnosed as autistic in June, at the age of 49, but I’ve not shared this with my manager.” So their question is, “Is there any evidence that perimenopause can heighten autistic symptoms as it’s only been with hindsight post diagnosis during the peri that my ability to ask has been non-existent? So is there any evidence that perimenopause can heighten autistic symptoms as it’s only been during the peri that my ability to mask has been non-existent?”

 

Deborah Leveroy: So if I’m understanding the question correctly, and apologies if I haven’t, so the piece of research that I cited, which is absolutely named, I think, when my autism broke, is really interesting. And this concept of autism breaking, so the idea that you kind of held in. Whether or not you were diagnosed or identified beforehand, there was obviously potentially a degree of, as you said, sort of masking, coping strategies, camouflaging. And the idea is that in the research what it’s basically saying is that, your autism breaks, so that kind of cover, if you like, the mask breaks because the impact of hormonal changes essentially exacerbates existing autistic traits, the ones that are potentially more challenging. And it means that the strategies that you’d put in place, or unconsciously, compensation strategies, if you like, are no longer working. I guess that’s my short answer.

 

Again, I think that article is really powerful, and I take a lot just in a way from the title or I think that the title, when my autism broke, is actually from an actual participant who talks about her autism is actually breaking. So this image of in some way one’s autism being kind of confined or like, I can’t think of the word at the moment, that’s my working memory. But the idea of kind of the autism being something that was kind of, if you like, managed or you were kind of treading along and then suddenly, you get the perimenopause stuff, and then it’s like, wow, what’s this kind of thing.

 

So yeah, I think, again, I will put that article in the thing, but that’s essentially what is being said from existing research. As I said, it’s only in the last I’d say five years, so there’s obviously still much more research to come out to of this. So I think anything that I say is with a massive disclaimer of caution, as in that there’s still much more research to be done.

 

Claire Dibben: Yeah, of course. Thank you. Just to reiterate, we’ll send an email out tomorrow with all the links to the wonderful resources in the slides. So if anything that Deborah shared today has really sort of peaked or interest, and you want to do a bit more digging, then you can sort of go and do that separate to this webinar. Also, the person that asked that question has just said, “Thank you for answering the question.” They have no idea that they were artistic before June. So it was a really life changing moment for them that [inaudible – 00:53:14] everything.

There’s a question here which you may feel that you’ve already addressed, Deborah. But it’s got six upvotes, so I’m just going to put it to you again. They ask, “What if you have a male manager who, from an age and culture perspective, feels very uncomfortable talking about both menopause and neurodiversity. So how would you approach that?”

 

Deborah Leveroy: Wow! That is really good question. I think that whatever organization you work in, your employer kind of needs to provide support to you beyond the line manager, so that it’s not just a kind of bottleneck as in it’s me and then the line manager and there’s nobody else.

 

So if there is the option to speak to somebody else in HR, or another person you know, of responsibility, then that’s something that I would consider I guess in terms of like, whether it’s that individual person that you’ve described, or someone in HR, whoever it is, I guess what I would suggest in any case, is that you really think about as much as you can planning that conversation as much as you can. So as much as you can, as much as one can ever control the conversation, which is two people, you can prepare in some way. So really think about what’s your kind of, I guess, preferred method of meeting. So is that conversation for you going to be more comfortable face to face? Is it going to be comfortable remotely, because you’ll have more privacy in your remote office potentially? Would you prefer to have that conversations in email, or as a messaging chat, for example?

 

Sometimes we might find that we can kind of articulate our needs more easily when it’s not a kind of face-to-face kind of conversation. And it’s very similar, I guess, with the planning for any medical appointments, make notes beforehand about what you want to say, the ways that it’s impacting you. I think also, if you can, if you’re going to have this conversation face to face, or virtually face to face and you’re going to say it out loud, then take your notes and practice out loud, because we all know that there’s a massive gap between when you write stuff and you write stuff down, and then you come to say it out of your actual mouth that this tends to be massive discrepancy. But if you’ve kind of practiced, you’ve said it out loud, you’ve heard yourself saying these things, and that can sort of just soften that gap a little bit.

 

And also go to the line manager, I’d say, with solutions. Even if they’re not entire solutions, even if you don’t feel you should be offering solutions because that’s their job potentially, I think it, if you go showing kind of these are some ideas I’ve got, then that kind of helps the line manager potentially makes it less stressful for them and kind of it’s much more of a two-way thing.

 

Claire Dibben: Yeah, some really great practical tips there, Deborah, and I think the part that you just mentioned sort of arriving with solutions, it’s just if you have knowledge, because you’ve been doing your own research or speaking to people, so sharing that with your manager to help them and equip them to help you is actually really powerful thing to do. Right. So we’ve got three minutes left, and I need to wrap up the webinar. I want to spend a little bit of time just telling you about next month’s event, but Deborah, thank you once again. Like we’ve had so many lovely messages in the chat. Everyone is saying this has been super great and a really interesting and valuable session. So thank you so much for spending your time talking to us today, and also for answering those questions so beautifully as well.

 

Deborah Leveroy: Thank you for having me.

 

Claire Dibben: Yeah, thank you so much, Deborah. And if you enjoyed today’s webinar, please help us spread the word and tell people about these events. So I mentioned at the start that we’re a community of 1,800 people and that’s because of you, because you’re telling people about these events, and you’re spreading the word so whether that’s mentioning it to a colleague or talking about on LinkedIn, every bit of one month helps. And we really want to grow this community because we want to create a really valuable network for you so, whether you’re a neurodivergent yourself, whether you manage a team of people in an organization, and you want to better understand how to support people, please do help us share the word. Share the word? Spread the word.

 

So next month’s event is inclusive recruitment lessons from AXA UK. So my team are going to drop registration link in the chat right now. I’m super excited for next month’s session as well. The team from AXA will be sharing some really wonderful, practical tips around inclusive recruitment. So please do join us for that one if you are able to. And the link for that event will also be in the follow up email tomorrow, which will have a link to today’s recording, the transcript, and the slides.

 

And the team are also posting a link to the survey, which I mentioned at the start, where you can request a certificate of attendance if you’d like one, and we’d also really, really love to hear your feedback. Honestly, it directly shapes the events and the survey will appear when you exit the webinar as well. So please let us know your thoughts. If you loved it, if you think there’s some ways that we can improve, we always do go through and read it.

 

That’s all for today, everyone. Thank you once again for joining us. Thank you, Dr. Deborah Leveroy, joining us as well. It was honestly like so fascinating. I’ve got a notebook full of notes here and we’ll see you all next month for inclusive recruitment with Nikki Kelly and Jen Manuel from AXA UK.

 

Thanks everyone, bye.