Tony Mantor: Why Not Me ?
Dr Rachel Moseley: Autistic Voices, Challenges, Joys, and Research Empathy
29 Apr 2026
Transcript generated automatically by AI and may contain errors.
Chapter 1: What are the key issues surrounding autistic suicide prevention?
Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide. Hosted by Tony Mantor. Broadcasting from the heart of Music City, USA, Nashville, Tennessee. Join us as our guests share their raw, howlful 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 Mantour. 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.
No, my absolute pleasure.
So tell us, since we last spoke, what have you been up to?
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 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's been really positive as well.
Yes. And it was great to have you on to talk about both those subjects.
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Chapter 2: How does societal change impact suicide rates among autistic individuals?
Have you seen any meaningful changes? Are the numbers improving at all or are they staying pretty consistent as they have been?
It's really hard to tell if rates of suicide are changing in autistic people. It's hard 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. It has to go through a coroner's office and a lot of suicides are not actually recognised 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 awfully, in terms of UK statistics, we have a statutory process called National Child Mortality Database, where for every child that dies, there has to be a sort of statutory investigation of the death. And so that was released. Again, it's a little bit behind, but we recently had 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 going to have a case where many deaths are not registered as suicide. And we'll also have the case when Not all autistic children are actually diagnosed as autistic, so the rates are probably a lot higher.
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?
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 and inequality, discrimination, bullying.
And in response, autistic people typically said, we want systemic societal changes throughout. Rather than just giving us a crisis app, we want... changes in the education system so that it's accessible. We want help with employment. We want greater financial security. We want access to health care and so forth.
So they're telling us that really we need a whole society approach to tackling suicide in autistic people.
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Chapter 3: What common misdiagnoses do autistic individuals face?
Really, what it is, is they're autistic. Have you seen this happen consistently?
Yes, indeed. Actually, 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 ADHDers and autistic people you'll 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.
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?
Oh, if we had the answer, 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 and 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 perspective when we have the kind of trumpeting of this kind of cure narrative.
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. What do clinicians still misunderstand about autism and mental health?
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 and 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 wrong.
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...
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Chapter 4: How does masking affect mental health in autistic people?
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'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 them asking.
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 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?
I think a key part is 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 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 is something we have to challenge the environment that drives masking behaviours.
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 live in a world where sadly masking is sometimes necessary for
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 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
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Chapter 5: What challenges do autistic girls face regarding early diagnosis?
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 are undiagnosed and hence who are late diagnosed, they tend to experience a lot of complex chronic trauma and mental health difficulties, physical health difficulties, employment problems, relationship difficulties and so forth and so forth, education difficulties.
They often blame themselves for these things or they're labeled 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, including some really complex ones. There might be grief and resentment there because, you know, they'd 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. And there's a sense of, often a sense of validation that actually I'm not a bad person. I'm actually just autistic. I can give the analogy of 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.
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.
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.
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?
This is an interesting question. So the thing that I think comes to my mind 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 showing that if you do any kind of artificial experimental task or a questionnaire measuring empathy,
Autistic people laugh empathy, but this very much doesn't relate, doesn't correlate with what autistic people tell us. 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.
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Chapter 6: What emotions are associated with late autism diagnosis?
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.
Yes.
What does autistic joy look like? What strength does that give them that society might just overlook?
Well, my autistic joy is a really neglected research area. So we're beginning to have more studies on 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 repetitive movements. So sometimes you hear these called autistic glimmers, and they're really, really important for well-being.
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 was just speaking about. So how does this affect you?
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, as an autistic person, be able to do that.
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?
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Chapter 7: How is the narrative of empathy towards autistic individuals misunderstood?
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?
It's really, really difficult. And it changes very slow to come. In the UK, we're doing a lot, 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 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. We need to demand better for our autistic loved ones.
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.
It is. There's no simple answer, unfortunately, but you're right.
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?
Oh, very difficult. Great question. I'm just trying to think of my most 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 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.
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Chapter 8: What insights does Dr. Moseley provide about autistic menopause?
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.
You mentioned that you have written a book. Tell us a little about it.
Yes. So I wrote a book with my colleague, Professor Julie Gamble-Turner, and we wrote a book about autistic menopause. So it's published by Jessica Kingsley Publisher. It's called Autistic Menopause, A Guide to the Menopausal 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 what menopause might be like for an autistic person, an autistic menopause rather than a kind of standard menopause you might read about. We wanted to give people stories they could relate to.
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, 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.
Nice, nice. I love it.
Now, how do they find the book? So you can get hold of that anywhere online. So it'll be on your standard Amazon. I think anywhere you get books, you can find it.
If you would, give our listeners the title of your book once again.
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