← Tony Mantor: Why Not Me ?
Tony Mantor: Why Not Me ?
Dr Rachel Moseley: Autistic Voices, Challenges, Joys, and Research Empathy
00:29:02
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- [00:01]
Capital One Savor Card Announcer
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- [00:30]
Dr. Rachel Moseley
Mom, can you tell me a story?
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Carvana Narrator
Sure. Once upon a time, a mom needed a new car.
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Dr. Rachel Moseley
Was she brave?
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Carvana Narrator
She was tired mostly. But she went to Carvana.com and found a great car at a great price. No secret treasure map required.
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Dr. Rachel Moseley
Did you have to fight a dragon?
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Carvana Customer
Nope.
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Carvana Narrator
She bought it 100% online from her bed, actually.
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Dr. Rachel Moseley
Was it scary?
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Carvana Narrator
Honey, it was as unscary as car buying could be.
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Dr. Rachel Moseley
Did the car have a sunroof? It did, actually. Okay, good story.
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Carvana Narrator
Car buying you'll want to tell stories about. Buy your car today on Carvana. Delivery fees may apply.
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Dr. Rachel Moseley
Foreign.
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Tony Mantour
Welcome to why Not Me Embracing Autism and Mental Health Worldwide, hosted by Tony Mantour, broadcasting from the heart of Music City, usa, Nashville, Tennessee. Join us as our guests share their raw, 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 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, and that's Dr. Rachel Moseley. 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,
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Capital One Savor Card Announcer
brought to you by the Capital One Savor card. With Savor, you earn unlimited 3% cash back on dining, entertainment, and at grocery stores. That's unlimited cash back on ordering takeout from home or unlimited cash back on tickets to concerts and games. So grab a bite, grab a seat and earn unlimited 3% cash back with the Saver card. Capital One. What's in your wallet? Terms apply. See CapitalOne.com for details. I sold my car in Carvana last night.
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Dr. Rachel Moseley
Well, that's cool.
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Carvana Customer
No, you don't understand. It went perfectly. Real offer down to the penny. They're picking it up tomorrow. Nothing went wr.
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Carvana Narrator
So what's the problem?
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Carvana Customer
That is the problem. Nothing in my life goes as smoothly. I'm waiting for the catch.
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Carvana Narrator
Maybe there's no catch.
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Carvana Customer
That's exactly what a catch would want me to think.
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Tony Mantour
Wow.
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Carvana Narrator
You need to relax.
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Carvana Customer
I need to knock on wood.
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Tony Mantour
Do we have.
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Carvana Customer
What is this? Table wood?
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Carvana Narrator
I think it's laminate.
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Carvana Customer
Okay. Yeah, that's good. That's close enough.
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Carvana Narrator
Car selling without a catch. Sell your car today on Carvana. Pick up fees may apply.
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Tony Mantour
Thanks for joining us today.
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Dr. Rachel Moseley
My absolute pleasure.
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Tony Mantour
So tell us, since we last spoke, what have you been up to?
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Dr. Rachel Moseley
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. That's been really positive as well.
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Tony Mantour
Yes, and it was great to have you on to talk about both those subjects.
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Dr. Rachel Moseley
Yes, exactly. They are my two subjects. Yes.
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Tony Mantour
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?
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Dr. Rachel Moseley
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 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 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, investigation of that, 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.
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Tony Mantour
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?
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Dr. Rachel Moseley
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 app, you know, 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 healthcare and so forth. So they're telling us that really we need a whole society approach to tackling suicide and autistic people.
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Tony Mantour
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.
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Dr. Rachel Moseley
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 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 who have a responsibility for responsible reporting, they need to talk about autism very differently in a humane, non stigmatizing way.
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Tony Mantour
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?
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Dr. Rachel Moseley
Yes, indeed. Actually, the most common misdiagnosis we hear about is personality disorder, especially what's called borderline personality disorder or emotionally unstable personality disorder. And essentially that is often a diagnosis given to ADHDers and autistic people. You 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.
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Tony Mantour
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?
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Dr. Rachel Moseley
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 in figures, in places of responsibility and authority. This will 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.
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Tony Mantour
Okay, I think this is interesting. You just brought up the mental health issue.
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Dr. Rachel Moseley
Go ahead.
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Tony Mantour
And 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.
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Dr. Rachel Moseley
Right.
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Tony Mantour
What do clinicians still misunderstand about autism and mental health?
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Dr. Rachel Moseley
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, 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.
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Tony Mantour
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.
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Dr. Rachel Moseley
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, 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, 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.
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Tony Mantour
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?
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Dr. Rachel Moseley
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 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 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 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 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.
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Tony Mantour
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.
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Dr. Rachel Moseley
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 educate the other person.
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Tony Mantour
Yeah. And if you're friends, friends should accept friends for what they are, not what they think they are.
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Dr. Rachel Moseley
That's devastating. That's really devastating.
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Tony Mantour
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.
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Dr. Rachel Moseley
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, 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, 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'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 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.
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Tony Mantour
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.
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Dr. Rachel Moseley
Wow.
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Tony Mantour
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.
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Dr. Rachel Moseley
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.
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Tony Mantour
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?
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Dr. Rachel Moseley
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, a kind of artificial experimental task or a questionnaire measuring empathy, autistic people lack empathy. But this very much doesn't relate, it 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. So we actually explored this a little bit in our own research and we found likewise that essentially when people have stronger, 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. They have emotional empathy in abundance. 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 research is beginning to catch up and align with what autistic people are saying.
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Tony Mantour
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?
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Dr. Rachel Moseley
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
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Tony Mantour
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?
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Dr. Rachel Moseley
Yes.
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Tony Mantour
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?
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Dr. Rachel Moseley
To be honest, I feel Very privileged to be in the 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 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.
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Tony Mantour
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?
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Dr. Rachel Moseley
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.
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Tony Mantour
Yeah, I think that's a very key thing because the legislators have to know 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.
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Dr. Rachel Moseley
It is. There's no simple answer, unfortunately, but you're right.
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Tony Mantour
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?
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Dr. Rachel Moseley
No, they difficult. Great question. I'm just trying to think most of my 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 foreign 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, 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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Tony Mantour
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 ahold of it, start to understand, and then true change can happen. We have to hope for the future.
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Dr. Rachel Moseley
I hope so too. 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.
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Tony Mantour
You mentioned that you have written a book. Tell us a little about it.
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Dr. Rachel Moseley
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 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 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.
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Tony Mantour
Nice. Nice. I love it. Now, how do they find the book?
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Dr. Rachel Moseley
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.
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Tony Mantour
If you would give our listeners the title of your book, once again, Autistic
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Dr. Rachel Moseley
Menopause A Guide to the Menopausal Transition for Autistic People and those who support them.
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Tony Mantour
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.
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Dr. Rachel Moseley
Thank you so much for having me.
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Tony Mantour
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 WhyNotMe World. One last thing, spread the word about why not me. Our conversations are inspiring guests that show you are not alone in this world.
- [31:03]
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Brought to you by the Capital One Savor card. With Savor, you earn unlimited 3% cash back on dining, entertainment and at grocery stores. That's unlimited cash back on ordering takeout from home or unlimited cash back on tickets to concerts and games. So grab a bite, grab a seat and earn unlimited 3% cash back with the Savor Card. Capital One what's in your wallet? Terms apply. See capitalone.com for details. If you like the show, please take a moment to rate, review and subscribe. It really does help the show to grow. Thank you for listening.