Dr Rachel Moseley: Autistic Voices, Challenges, Joys, and Research Empathy

Dr. Rachel Moseley on Autistic Suicide Prevention, Masking, Misdiagnosis, and Autistic Menopause
Host Tony Mantor in Nashville welcomes returning guest Dr. Rachel Mosley to discuss her UK-based research on autistic suicidality, self-injury, masking/burnout, misdiagnosis, and menopause.
Mosley explains that changes in autistic suicide rates are hard to track due to delayed and incomplete reporting, and cites data indicating suicide as the leading cause of death in autistic children in the National Child Mortality Database, likely undercounted due to missed diagnoses.
Autistic participants in her research emphasize suicide prevention requires systemic societal change addressing stigma, discrimination, bullying, education accessibility, employment, financial security, and healthcare.
They discuss clinicians mistaking autism for mental illness, common misdiagnosis as borderline personality disorder, the safety-driven nature of masking, and the complex emotions and relief of late diagnosis.
Moseley challenges the “lack of empathy” narrative and highlights autistic joy through passions, sensory joy, and stimming. She also presents her book, "Autistic Menopause," featuring interviews with 16 autistic people.
Show Welcome
Meet Dr Rachel Mosley
Suicide Research Update
revention Needs System Change
Misdiagnosis And Cure Myths
Mental Health And Masking
Autistic Girls And Early Diagnosis
Late Diagnosis Emotions
Empathy Myth Debunked
Autistic Joy And Flourishing
Changing Systems And Policy
Autistic Menopause Book
Final Thanks And Outro

INTRO/OUTRO: T.Wild
Mantor Music BMI

The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. 

The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.

Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.

Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.

Reliance on this podcast's contents is at the listener's own risk. 

Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided.

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intro/outro music bed written by T. Wild
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Transcript

SPEAKER_00 0:06

Welcome to Why Not Mini, embracing autism and mental health worldwide. Hosted by Tony Mentor. Broadcasting from the heart of Music City, USA, Nashville, Tennessee. Join us as our guests share their wrong, powerful stories. Some will spark laughter, others will move you to tears. These real life journeys inspire, connect, and remind you that you're never alone. We're igniting a global movement to empower everyone to make a lasting difference by fostering deep awareness, unwavering acceptance, and profound understanding of autism and mental health. Tune in, be inspired, and join us in transforming the world one story at a time. Hi, I'm Tony Mantor. Welcome to Why Not Me, Embracing Autism and Mental Health Worldwide. Before we jump in, if you haven't already, tap the follow button. It only takes two seconds and it helps this show reach more families that need to hear these conversations. Joining us today is a person that is no stranger to this show. She's joined us a couple of times to talk about her research. That's Dr. Rachel Mosley. Her research has explored topics including autistic burnout, suicidality, camouflaging or masking, menopause, and of course the impact that misunderstanding and the lack of support can have on autistic adults. She has tremendous information. So before we dive into our episode, we'll be back with an uninterrupted show right after a word from our sponsors. Thanks for joining us today.

SPEAKER_01 1:55

My absolute pleasure.

SPEAKER_00 1:57

So tell us, since we last spoke, what have you been up to?

SPEAKER_01 2:00

Oh, I've been working on a few different things. So I have a couple of different projects I'm working on. I do a lot of work around suicide and self-injury. And so we've we've done some quite big work here in the UK trying to identify what autistic people think we should focus on in order to prevent suicide. But then I've also been doing a few different things in the kind of menopause space. And so we've recently published a book which we hope will help people. So that that's been really positive as well.

SPEAKER_00 2:31

Yes, and it was great to have you on to talk about both those subjects.

SPEAKER_01 2:35

Yes, exactly. So they are my two subjects, yes.

SPEAKER_00 2:38

When we talk about suicide, it's still one of those subjects that people are uncomfortable bringing up. But the reality is, it's something we have to talk about openly if we want to prevent it. I think it's been about a year and a half since you were on to talk about this. Have you seen any meaningful changes? Are the numbers improving at all, or are they staying pretty consistent as they have been?

SPEAKER_01 3:01

It's really hard to tell if rates of suicide are changing in autistic people. It's hard for to tell for multiple reasons because often, certainly in the UK, it takes us a long time to find out if a death was suicide. Um, it has to go through a coroner's office, and a lot of suicides are not actually recognized as suicides, and hence we never get to hear about them. So typically the reporting on suicide is always a few years late, and as such, we're not aware of any change in the rates of autistic people who die by suicide, and of course many more consider suicide and attempt suicide but don't die. Quite um awfully in terms of UK statistics, we have a um statutory process called National Child Mortality Database, where for every child that dies, there has to be a sort of statutory investigation of that of the death. And so that was released. Again, it's a little bit behind, but we recently had a a version released which focused on autistic people, autistic children, and suicide was the leading cause of death in autistic children. So importantly to mention again, you're gonna have a case where many deaths are not registered as suicide, and we'll also have a case when not all autistic children are actually diagnosed as autistic, so the rates are probably a lot higher.

SPEAKER_00 4:29

So what do you think families need to know? And not just families, but communities. What do they need to know and how can they help so to prevent this from continuing to happen?

SPEAKER_01 4:41

Well, in our most recent research, we really wanted to ask autistic people themselves what are the factors driving these high suicide rates and also what needs to change in order to prevent suicides. So our participants told us that to a large extent, suicides in autistic people are a societal problem. They are related to stigma, inequality, discrimination, bullying. And in response, autistic people typically said, we want systemic societal changes, you know, throughout rather than you know, just giving us an at, you know, a crisis act we want changes in the education system so that it's accessible, we want um help with employment, we want greater financial security, we want access to healthcare and so forth. So they're telling us that really we need a whole society approach to tackling suicide and autistic people.

SPEAKER_00 5:41

One of the issues that I continue to hear is when someone that does not understand autism, they hear someone is autistic and all of a sudden they think that that person needs to be fixed, and there is no fix for this. How do we get this across to people that this is not a person that needs to be fixed? This is a system that needs to be fixed.

SPEAKER_01 6:06

It's really difficult because I think we're beginning to see changes in the way the way children are taught about autism. So we are beginning to see, you know, generational changes in the way people think about autism. But it's super, super hard to get those messages through to the older generations because you know, when they grew up autism was um handicapped. It was, you know, the way we talked about autism was very different. It's really hard to challenge that. But I think it's really important that in public discourse about autism, figures who, you know, are authorities um who have a responsibility um for responsible reporting, they need to talk about autism very differently and in a humane and non-stigmatizing way.

SPEAKER_00 6:55

In your research, have you seen that people tend to get misdiagnosed? Sometimes they'll say they're bipolar, they'll say they're ADHD, anxiety. Really, what it is, is they're autistic. Have you seen this happen consistently?

SPEAKER_01 7:14

Yes, indeed. Actually, the most um the most common misdiagnosis we hear about is personality disorder, especially what's called borderline personality disorder or emotionally unstated personality disorder. And essentially, that is often a diagnosis given to ADHD as and autistic people who show suicidal behaviors or self-harm. So basically, if you're very dysregulated, if you're having suicidal thoughts or self-harming, you're often given that label, even if you're actually neurodivergent.

SPEAKER_00 7:49

How do we get around this so that we can get people to understand that autism is not a disease? All it is is someone that has a brain that sees things and perceives things in a different way than others do. How do we get this across to them that this is not a problem?

SPEAKER_01 8:12

Oh, if we had the answer, oh, everything would be changed. It's super difficult. I think things are improving. We are seeing new generations of clinicians, mental health professionals who have a better understanding. And it's really important, as I say, authority, people in figures in places of responsibility and authority. There's some really terribly, dreadfully harmful rhetoric, and it's just so harmful. And it's very, very hard for us to move forward and progress towards this neuroaffirmative um perspective when we have the kind of um trumpeting of this kind of cure narrative.

SPEAKER_00 8:52

Okay, I think this is interesting. You just brought up the mental health issue. There's an overlap between autism and mental health. Some people think of ADHD, anxiety, or whatever the case may be. Yet autism and those things can overlap several times. Right. What do clinicians still misunderstand about autism and mental health?

SPEAKER_01 9:18

So there's a lot of misunderstandings out there. But I think a really problematic one is that quite often we hear clinicians kind of confuse autism like mental illness. So they will think that being anxious or having anxiety or depression is just a natural part of being autistic, and hence you don't need to treat it. And that is terribly, terribly what we know from research is that mental illness in autistic people is complex. There's genetic stuff going on, but a lot of it is about trauma. And that tells us that autistic people don't need to have mental illnesses. We can be mentally healthy autistic people, and that's a really hopeful message. But it means that when clinicians see an autistic person with depression or with anxiety, they need to treat that. They need to make, you know, autistic people can be free of mental illnesses, and we should be aiming for that.

SPEAKER_00 10:17

Another thing I think is often misunderstood is autism and mental health, especially the idea of masking. When autistic people feel like they have to mask to fit in, sometimes they can reach that burnout stage. They're trying to mask, they're doing their best, they're trying so hard, but eventually it just starts to break down. And that can turn into a long-time mental impact. How do we get people to understand that this is a very important issue that we have to look at?

SPEAKER_01 10:51

I think we have to keep talking about it. Keep talking, keep talking. And I think that with masking, it's really important to emphasize that it is a um it's not such a simple issue as, you know, we need to make autistic people stop masking, or we need to encourage autistic people to stop masking. Because the reality is it's not a safe world for autistic people to not mask. And so I think society has to take responsibility for the fact that autistic people mask because it's not safe in this society to be openly autistic. So there needs to be a kind of a realization that it's not the responsibility isn't with the autistic person. If the world was safe to be autistic in, then we wouldn't see the masking.

SPEAKER_00 11:39

Yeah, that's a great point. Now, one of the more under-recognized people with autism is the females. Most people, when they think about autism, they think about the males. Because of this, they can have the rougher road to travel. Lots of times they'll do heavy masking because they're trying to fit in with the other girls that are more popular. Eventually, this can create a lot of trauma for them. How do we get to get them to understand that by doing all this, it really is not healthy? And unfortunately, it can lead to a lot of things, including depression, because they're not fitting in the way they hoped that they would. How do we help them?

SPEAKER_01 12:23

I think a key part is diagnosing diagnosing autistic people as soon as possible. Really importantly, when you're an autistic person, whether you're female or not, you often don't know you're masking. Especially if you don't know you're autistic. You just know that I can really resonate with this. You you just know that if you behave in a certain way, you're less likely to be bullied or you're less likely to be rejected. And so it's really it's really impossible to know as an adolescent that you know what you're doing is called masking and it has all these long-term outcomes because right there and then it keeps you safe. So again, it's it is something we have to challenge the environment that drives masking behaviors. But if we diagnose autistic people early on and we can help them to be self-aware that they are masking, then we can also start to put in place some kind of countermeasures. So even if, as I mentioned, you know, we we live in a world where sadly masking is sometimes necessary for uh self-protection. But if we know we're autistic and we know we're masking, we can plan in things like extra self-care, we can learn how to unmask, and we can just be more aware of the cost of it.

SPEAKER_00 13:48

I have a gentleman I was talking with. He was diagnosed autistic later in life, and that's another subject I want to get into right after this. He had been masking pretty much his whole life. Then he was around this person he felt really comfortable with, and he didn't mask. He just let himself be himself. The person he was with said, What's wrong with you? You're doing this, you're doing that. It was at that point he realized that he had to go back to masking again. He did, and he turned the whole situation around in a heartbeat. Everything turned out okay, but that's a tough situation.

SPEAKER_01 14:27

That's such a such a sad story. And again, it's difficult because it shouldn't be the responsibility of the autistic person to to educate the other person.

SPEAKER_00 14:40

Yeah, and if you're friends, friends should accept friends for what they are. Not what they think they are.

SPEAKER_01 14:47

That's devastating. That's really devastating.

SPEAKER_00 14:51

No, like I was talking earlier, he was diagnosed later in life. Have you done or been around anyone that's done research on this? How being late diagnosed, how they accept it, and then of course how it changed their life from that point on.

SPEAKER_01 15:10

So we know that I have done some related research, and I know of a lot of research in this area. So we know that autistic people who grow up undiagnosed and hence who are late diagnosed, they tend to experience a lot of complex chronic trauma, um, mental health difficulties, physical health difficulties, you know, employment problems, relationship difficulties, and so forth and so forth. Education difficulties. They often blame themselves for these things, or they're labelled by other people as weird or broken, or so forth. So what sometimes happens when a person gets diagnosed is it's a huge torrent of emotions, um, including some really complex ones. There might be grief and resentment there because you know they've gone through all this suffering that was needless. Why weren't they picked up sooner? What kind of life could they have had? So there's a lot of complex emotions, but there's also often a lot of relief. Um, and there's a sense of often a sense of validation that actually I'm not a bad person. I'm I'm actually just autistic. I can give the analogy of uh one of our menopause research participants. She talked about how her whole life she'd felt like a broken horse. But then when she discovered she was autistic, she realized she was a beautifully functioning zebra.

SPEAKER_00 16:32

Yeah, that's a great story. I was speaking with a person just the other day, and his dad was diagnosed autistic at the age of 70. Wow. That just changed his whole perception of life. They started looking back and then everything started to make perfect sense. So the father and son late diagnosed, and it created a really good connection. That was just a great positive.

SPEAKER_01 16:59

So strongly. What we hear from people is that realizing they're autistic allows them to be so much more self-compassionate. They're often such fierce critics of themselves, and then understanding that they're autistic really validates their difficulties and just allows them to be much more self-compassionate.

SPEAKER_00 17:20

There's a difference between clinical research and lived experience. As a researcher, have you seen where research would say one thing and then lived experience would say the complete opposite? Have you seen this kind of scenario at all?

SPEAKER_01 17:37

This is an interesting question. So the thing that I think comes to my mind um in terms of how, as you say, research can kind of be telling one story and autistic people can be telling another. So historically, there's this idea that autistic people lack empathy. Lots and lots of research um showing that if you do a um a kind of artificial experimental task or a questionnaire measuring empathy, autistic people lack empathy. But this very much doesn't relate, uh doesn't correlate with what autistic people tell us. Um what they tell us is that actually I feel all the emotions in the room around me, I'm so affected by other people's emotions. So we actually explored this a little bit in our own research, and we found likewise that essentially when people have stronger, um stronger emotional empathy, which means that they they feel the emotions of other people very intensely. Whereas their cognitive empathy, which is like their understanding of other people's emotional states, might be a bit lower. So we found that autistic people, because they have this really strong emotional response to other people's emotions, it's actually overwhelming for them. So they have emotional empathy in abundance. Um, they feel everything, all the emotions of other people, and it really affects them actually in a harmful way because it's so overwhelming. So it's a case where historically researchers said one thing, autistic people have said that's not true, and that's harming us. And now we are beginning to the the research is beginning to catch up and align with what autistic people are saying.

SPEAKER_00 19:23

Well, I think it has something to do with understanding. Many times when a researcher is looking at something, it can be black and white. You see a picture of something, you see words on a paper, and that's it. There's just two different perspectives on it. I think that's very interesting. Another thing you brought up, and that's joy. We often focus on autistic challenges. What does autistic joy look like? What strength does that give them that society might just overlook?

SPEAKER_01 19:54

Well, more autistic joy is a really neglected research area. So we're beginning to have more studies on what's what's often known as autistic flourishing and as you say, joy. And the kinds of things that autistic people talk about as bringing them joy are engaging in their passions. So what some people call special interests, I prefer to call passions. So autistic people describe that as being something that's joyous. They also describe sensory joy. As you say, we often talk a lot about sensory distress, but autistic people talk a lot about joy in sensory experiences as well, and joy in stimming in like repetitive movements. So sometimes you hear these called autistic glimmers, and they're really, really important for well-being.

SPEAKER_00 20:42

In case we have new listeners, and I hope we do, the audience might not realize that you are autistic as well, correct? Yes. So when you're doing clinical research, how does this affect you? Because you're autistic as well. You see all the research, the calculations, the numbers that might just very well say something different, like we were just speaking about. So how does this affect you?

SPEAKER_01 21:07

Um, to be honest, I feel very privileged to be in a position I'm in, being able to do research with the autistic community. Because the kind of research I'm doing right now is more where I'm studying topics that historically haven't really been talked about. People haven't really asked autistic people, you know, what's really going on with your menopause or your suicidal experiences. So the research I'm trying to do is more bringing to light what autistic people are experiencing. I feel very, very, very lucky to um, as an autistic person, be able to do that.

SPEAKER_00 21:51

I know we've made great steps. Unfortunately, there's a lot of people that still look at autism as a deficit lens. The data is clear, the lived experience is clear, the mental health and the understanding that we're trying to get across is pretty clear. We're finding that out. So how do we change the system? Because a lot of people are missing the things that you are finding out and other researchers are finding out, and the system isn't changing. Or if it is, it's changing very, very slowly. How do we get the system boosted to catch up with everything that we're talking about?

SPEAKER_01 22:33

It's really, really difficult, and it changes very slow to come. Um in the UK we're doing a lot, uh, everything we can to engage with policymakers because, of course, your everyday person on the street, we can all do small things and we can all behave differently towards autistic people in our lives and people, you know, who might be autistic. We can all be kinder. But to achieve systemic change, we absolutely need to go after the policymakers, so to speak. Um, we need to demand better for our autistic loved ones.

SPEAKER_00 23:13

Yeah, I think that's a very key thing because the legislators have to know. Super. I'm doing a special with a lot of legislators, and even when they know, it's getting the other people and the other legislators to know and vote on it as well to help make that change. And getting everyone on board, it is really difficult.

SPEAKER_01 23:36

It is. There's no simple answer, unfortunately, but you're right.

SPEAKER_00 23:41

Now we've covered a lot of things. What do you think that people still need to hear that is very important about the research you're doing and what you're going to be doing moving forward?

SPEAKER_01 23:54

Oh very difficult. Great question. I'm just trying to think the most of the top answer. I'd say we know seeing more and more the inequalities that autistic people face and they've always faced. So, whereas in the past, there's been this idea that autistic people just naturally have mental illnesses and we, you know, we naturally lead shorter lives and so forth. We're now really bringing to the fore that it doesn't have to be this way, that we have shorter lives and have poorer health because of inequalities. And that really shifts the narrative. It makes it not about, you know, treating the individual or treating autism in the individual. It's about demanding better lives for autistic people, not equal lives. So that narrative is really changing and hence it's shifting the idea that autism and being autistic is pathological. It's rather saying that the world does not treat autistic people fairly. So that I think is a positive direction because in the past the way people wrote about autism and the assumptions they made were really, really awful.

SPEAKER_00 25:10

Yeah, that's a big thing. People tend to make their assumptions and they know nothing about it sometimes, and they have nothing to back up what they're telling other people. It's hurtful. My hope is that with everything that you're doing, the information you're putting out there, that people will grab a hold of it, start to understand, and then true change can happen. We have to hope for the future.

SPEAKER_01 25:39

I hope so too. I I think a part of that, a really helpful part, is hearing from autistic people themselves. Autistic people are very often othered in society. They are treated and perceived as other. Whereas if we can listen to autistic voices, because they're there waiting to be heard, we can sort of challenge that idea that autistic people are other than you. We all share much much more than we differ.

SPEAKER_00 26:08

You mentioned that you have written a book. Tell us a little about it.

SPEAKER_01 26:13

Yes. So um I wrote a book with my colleague Professor Julie Gamble Towner, and we wrote a book about autistic menopause. So it's published by Jessica Kingsley Publisher. It's called Autistic Metopause: A Guide to the Menopause Transition for Autistic People and Those Who Support Them. So it is aimed at autistic people, as well as healthcare professionals or other professionals and their loved ones. And what we really wanted to do with this book was we really wanted to demystify the experience of menopause for autistic people. So we wanted to talk about you know what menopause might be like for an autistic person, you know, an autistic menopause rather than a kind of standard menopause you might read about. Um we wanted to give people stories they could relate to. Um we interviewed 16 autistic people who were going through menopause or had gone through it, and so their experience is embedded throughout the book. So we've got all their stories, um, all their descriptions of you know what they experienced and also how they coped with it, their advice for autistic people who are approaching menopause as well as for doctors. So we really hope it will help people feel less alone.

SPEAKER_00 27:34

Nice, nice. I love it.

SPEAKER_01 27:36

Now, how do they find the book? So you can get hold of that uh anywhere online. Um so it'll be on your the standard Amazon. Um I think anywhere you get you get books, you can find it.

SPEAKER_00 27:49

If you would give our listeners the title of your book once again.

SPEAKER_01 27:53

Autistic Menopause, a guide to the menopausal transition for autistic people and those who support them.

SPEAKER_00 28:00

That's awesome. It's just great that you're doing this work and putting it out there to help people. With that said, this has been really good. Great information, great conversation. I really appreciate you taking the time to join us today.

SPEAKER_01 28:15

Thank you so much for having me.

SPEAKER_00 28:16

Oh, it's been my pleasure. Thanks again. Thanks for taking time out of your busy schedule to listen to our show today. We hope you enjoyed it as much as we enjoyed bringing it to you. If you know someone who has a story to share, tell them to contact us at why notme.world. One last thing spread the word about why not me. Our conversations, our inspiring guest, the show. You are not alone in this world.