The health gap no one talks about

ABC Listen, podcasts, radio, news, music and more. Just a note before we start. This episode contains references to self-harm, sexual violence and distorted eating. It's really, really difficult being chronically ill and being chronically ill in a way that people don't see. Between 75 and 80% of young people reported having a mental health condition, for adults, that was like 80 to 90%. I spend a lot of time crying and going through everything that had happened, how could it have been avoided, how maybe if I was diagnosed sooner, it could have been avoided. Hi, I'm Grace Tane. And in this series, I look at what life is really like for autistic women and gender diverse people. If you haven't already listened to the first few episodes, scroll back in your feed. Go on, I'll wait. Did you know that autistic women have a shorter life expectancy, increased risk of suicide, and experienced higher rates of sexual violence, eating disorders and substance use than the general population? In this episode, we look at the reasons why autistic women experience poor health outcomes from medical misogyny to a lack of social supports. So, what can we do to make things better? We meet women doing exactly that, confronting the hard stuff, figuring out how to take care of themselves and living their best lives. I'm Grace Tane. And this is autistic AF. Just because you can't see how much I'm struggling and how much I'm going through every single day doesn't mean that it doesn't exist. Chloe Hayden is a 28-year-old actor, author and disability advocate, best known for her role as "Queenie on Heartbreak High." While Chloe is open about having been diagnosed as autistic at age 13, beneath the surface, she struggles with complex health challenges. The second I gained consciousness, I knew that my mind was different. Knowing that my body was different was a very, very different journey. Because despite knowing that my brain has been different from my entire life, I didn't have that same understanding about my body. You've spoken about being quite sick, growing up. Can you tell me about what that was like for you? I've always complained about my heart hurting and getting sick and not able to eat certain foods and not being able to eat very much at all. I had my first seizure when I was 13. And I did so many tests and the diagnosis ensed it up being she's got anxiety, do breathing exercises. And that kind of was a really recurring theme throughout my entire journey of all of my chronic illnesses was it being misdiagnosed as a mental health condition or it being just completely, completely invalidated. Chloe's not alone. Studies have found that the medical fraternity often overlooks or dismisses autistic women, especially when it comes to fatigue, pain and mental health. I've also got endometriosis and I have been in the emergency ward. So many times at like three o'clock in the morning screaming my head off because of how much pain I'm in. And the doctor will go, "Have you tried panadol?" Do you think I would be panadol? Panadol, if I had a trotist. Yeah, exactly. I think when it comes to my physical health, being autistic so much of my chronic health conditions where action is put down to over stimulation or a side effect of being autistic. You've also spoken openly about being diagnosed with anorexia when you were just 12 years old. Looking back now, what do you think the doctors missed or didn't understand about your experience at the time? I don't know the numbers specifically, but a very, very large number of people that have anorexia and other in disorders are also autistic. So it has to be part of the discussion when we're talking about treatment and helping. Studies from eating disorder clinics, including research from King's College London, suggests that around 20 to 30% of people with anorexia show autistic traits. Despite this, treatments aren't tailored to them. A lot of the treatment plans are actually entirely against what is going to help an autistic person. The types of food they make you eat in recovery programs is I'm not eating it because it's calorie-dense or because my brain is telling me that it's bad. I'm not eating it because it's a sensory nightmare. It ends up being a discussion that we're completely exempt from and our ability to get better becomes exceedingly more difficult. Like me, Chloe now recognises that she was misdiagnosed as anorexic, but was actually dealing with avoidant restrictive food intake disorder or arford. Arford affects around 1 to 5% of the general population, but in autistic people, some studies have put that figure as high as 20 to 30%. It's not about body image or picky eating. Arford is a diet driven by sensory sensitivities, aversion to certain food textures, and repetitive patterns around eating. When Chloe was getting treatment for anorexia, her doctors tried to change the routines and foods she relied on to feel safe. The other thing as well, which I think a lot of people don't understand, is that when you do try to remove those things or change those things, it's actually going to create significantly more issues, and possibly create anorexia and a body-based image disorder when there wasn't one there in the first place. Speaking of labels and misdiagnoses, what were some of the labels that you were given instead of being taken seriously by doctors? How did that impact you? How long do you have? So many, so many. When it comes to my chronic health conditions, anxiety was number one and continues to be number one. I still, to this day, have doctors googling my diagnoses in front of me. And for some of them, I will have GPs grow. That's not a real thing. We called some of the day words dramatic, difficult. But I'm called that every time I go to the doctor still. I was in an emergency ward last year, and the doctor on call, he was like, "Oh, what are your symptoms?" And I started listing them, and he goes, "That's too many." And I'm like, "Yeah, you're telling me." And he got quite upset and quite angry with me because of how many symptoms I had. Dr. Rachel Grove is a clinical psychologist and researcher at Sydney University. She also recently discovered she's autistic. While at University of Technology Sydney, Dr. Grove and a team of only autistic people looked at the health of autistic women, girls, and gender diverse people. Researchers spoke to girls as young as seven, right through to adult women. And what they found is pretty confronting. Between 75 and 80% of young people reported having a mental health condition. For adults, that was like 80 to 90%. Oh my gosh. Yeah. And again, for physical health, you know, even for young people, it was 30 to 50% and about 50 to 60% of the adults we spoke to reported additional physical health conditions, things like chronic pain, hypermobility, gut issues, all sorts of different things. So things to do with immunology and nervous system. No, the system. And regulation. Yes. And information. Yes. Those sorts of things. Absolutely. That was one of the things that came up in our research as well, that every day sort of trauma of just living in a world that's not designed for us. Yeah. On the mental health side, can you give us an idea of how significant these challenges are? It was stories of lifelong experience in mental health systems. There was one person in particular, I remember speaking to you that they said they'd been in the mental health system for 20 years. And not once, but as autism mentioned. So just continual kind of gaslighting or being told that the treatment isn't working for you because of you, not because it might not be the right support that you need for your mental health. So there was so many stories like that. And what are autistic women and gender diverse people experiencing when they try to access health care today? Unfortunately, really awful things in some cases, you know, medical gaslighting, not being believed when they say they're autistic, stigma, the stereotypes. Yeah, look autistic. Exactly. Right. Yeah. There's also a growing conversation about overlaps with things like chronic pain, which you know, intermetryosis, hypermobility, IBS, but not a lot of solid concrete research yet. Why is this research lagging behind the lived experience you're so commonly hearing about? I mean, research does tend to lag. That's one of the frustrating things. You know, a lot of the things we sort of know for 10, 15 years before they're actually put into practice or it's taken a very long time. for autistic voices to be included in research, just might people calling for a very long time. I think again, it's looking at women's health in general is not been considered a priority. So I think that's a factor. And that's why we decided to do this study focused on women and gender diverse people and girls, because that's definitely needed. Yeah, and in lieu of sufficient treatment and acknowledgement of the actual cause, people tend to develop coping strategies. What were some of the coping mechanisms that came up repeatedly in your research? A lot of stuff around self-harm, suicide, you know, masking, feeling it like you have to fit all the time or you can't be yourself. That came up a lot. Stuff around alcohol and drugs, particularly in younger years. Research from the Caroleanski Institute in Sweden found that autistic people are nearly twice as likely as the general population to experience substance-related problems. And if you're undiagnosed into adulthood, that risk is much higher. Long before diagnosis and in social settings, I felt like I had to drink. And especially if there was an event, I would need to pre-drink, because I'm like, I can't go there so far. And is 33. She's autistic and lives in regional New South Wales with her partner and two sons who are four and seven. Like Chloe, And has had a complex mix of physical and mental health conditions for much of her life. From a young age, she lent on alcohol as a coping mechanism. I think it went from originally a attempt to fit in and assimilate better. It started helping you on mask and being in those environments. I was that person in the popular group who was the odd one out, but when I was drunk, it was just easier to pretend that wasn't the case. And then throughout the years, that kind of turned into the dating scene and being desirable to men. While Ang initially used alcohol as a way to fit in and numb her overwhelm, things got worse throughout her teens. One particular night, she drank a whole bottle of bicarity before going to her boyfriend's house. Everything's kind of a blank. I don't remember a lot of it. All I do remember is waking up a couple of times the next morning in the same dress. I arrived in to you on top of me, having sex with me and then me blocking you out. And when I did sober up and came to, it didn't even click. It wasn't a red flag for me. It was just. I just thought it was normal. Ang is drinking escalated throughout her teens. She had a series of toxic boyfriends and put herself in dangerous situations again and again. But it was when her youngest son was born that her drinking got out of hand. Her baby boy didn't sleep much. And during the long hours, he was awake. He was constantly crying. I remember his first year of life. The feelings were too big and I didn't know what to do with them. I didn't know it was causing them. I didn't know how to fix it. And the alcohol made me feel better enough to go. Well, I can get through this now. Yeah, many autistic women find all kinds of maladaptive ways to cope, whether it is drinking or taking drugs. Another one is self-harm. And I. Like you have certainly been there. You've had a history of self-harming from a young age. How did that present for you? I remember the first time I did any sting market. It was then asleep over. I think I was 12. I didn't feel like I belonged and I wasn't really sure why. And I started by scratching the skin off the top of my hands to the point where it would blister. And I think then it was a cry for help and wanting people to notice so that they would fall over me and then I'd feel like somebody cared. And started cutting her arms and legs, hiding her first aid kit next to her bed. As time went on, the cutting became less of a cry for help and more as a coping tool when she was overwhelmed or during meltdowns. It felt like the world was spinning. Everything I said made things worse and that ended up being how I sort of grounded myself. Thankfully, Ange has since stopped turning to self-harm but she's not completely free of it. When something big happens, it might not even be big in the grand scheme of things but in my mind when it's too big for me to handle my brain goes to go and cut yourself. Like that's my first thought rather than, "Hey, let's just take a minute, let's breathe." It's really, really difficult being chronically ill and being chronically ill in a way that people don't see. This is Chloe Hayden again. While many of her health conditions aren't visible, she's in daily pain. She's struggled to get doctors to take her symptoms seriously because, hey, she looks fine. I haven't had a day under a seven out of 10 pain since I was 18. Everyone's pain level is immensely different and you just get used to living with it and so being conventionally attractive and not looking disabled, it makes people actually believing me. Even harder. It's even harder. Interestingly, your health journey is quite common for so many autistic women. With research now backing up overlaps between autism and chronic illness, can you tell us about some of the conditions you live with and how you manage them? I got the whole LinkedIn. The whole alphabet. The whole alphabet. I finally got my endometriosis diagnosis after what over a decade of trying to find answers for it. So I got the surgery and the first thing I asked is the same thing that most women ask and I said, "Did you find anything?" And they said, "Yeah, we found a bunch." And I balled my eyes out because I thank God that there was an answer to some of the pain that I was having. A physical validation. And also, oh my God, I have been going through this pain for my entire menstruating life and no one believed me. And he just told me it was a bad period and I had lost so much of my life to this condition because people didn't believe me. Incredibly, Chloe's Instagram followers were the first to point out that she also has something called "Ellis Danloss Syndrome." They were messaging my mom. They were messaging Dylan being like, "Hey, I'm really worried I think Chloe has this thing and I really think you need to ask her to look into it." What exactly were they citing as their reason for wanting you to explore this? So the main thing that I noticed is I can't sit with like two feet firmly plants on the ground. You and me both, girl. None of us can sit normally. There was a photo of me at a premiere where I was just standing on the red carpet and it went viral because my legs were like bending backwards. Chloe started researching the condition herself and it answered almost every single question I've ever had about my body. It affects every single aspect of my life. Hypermobile "Ellis Danloss Syndrome" is mainly characterized by bendy bodies and bendy joints. It's a connective tissue disorder that affects everything from joints and skin to the gut and nervous system. Emerging research suggests hypermobility may be far more common in autistic people than in the general population. Chloe's physical symptoms means she sometimes has to use walking aids and braces. "I've already lost jobs because I'm an autistic actor. A couple of years ago I had to utilize a wheelchair and this has kind of sound incredibly ableist but it was so terrifying and I was terrified of being perceived as being physically disabled because in my line of work, getting work where I'm not going to be caricatured as being that disabled actor was so terrifying to me. And it's still something that I'm having to unlearn every single day. Can you tell me about how your needs change over the course of a day or when your symptoms are sometimes invisible, fluctuating or misunderstood, just completely misunderstood by others?" "I am still so nervous when it comes to my different body about being able to tell myself and know what is good for me. Leaning on my support systems, like my husband is my greatest support. And people see this really bubbly bright girl and they see the outfits and the makeup and what I want them to see. But they don't see the fact that most nights he has to wash my hair for me and shower me and dress me and they don't see the crash that comes afterwards. And they don't see that on my off days I'm like bracing every part of my body and my shoulder will dislocate and I'll wake up and my rib has dislocated and I have to figure out how to put it all back together. They don't see the immense amount of physio that I have to go to and the immense amount of specialist appointments that I have." "I'm interested in this concept of inter-reception because in some of the research that I've done in pursuit of understanding my own body and ability to perceive the world that I've come across inter-reception. Can you speak to this?" "Yeah, so inter-reception in the most basic layman of terms is just your ability to understand your body and your mind and what they need. The amount of times that my mom and my dad and my husband will know that I'm about to crash like an hour before I actually do and know what I need before I need it myself." "Yeah." Because inter-reception governs things like hunger, fullness. [BLANK_AUDIO] knowing when to use the bathroom, thermoregulation, etc. And you're saying that the people around you are able to help you predict those things a little better. Yeah, absolutely. I have none of that. I don't know when I need to eat. I don't know when I need to drink. I don't know when I need to use the bathroom. Anything that my body needs to survive, I don't think about. I have a lot of alarms on my phone and a lot of reminders on my phone that tell me go and eat, go and do this, go and get a drink of water. I have people in my life that will feed me and know one time to feed me. I don't think I would be alive in honesty if it wasn't for the people that were helping me and that were supporting me in ways that I'm unable to help and support myself. It is having people that support you is so, so important. While Chloe has the support of her family and husband, she wants the rest of the world to see who she really is, beyond curated social posts. Not being scared to be myself and all aspects of myself, not just the parts that I think are palatable, the parts of myself that are messy and that are behind the scenes and that I don't want people to see. One of the big things that really came up, we wanted to hear from girls and women and gender-liverse people directly, was around the experience of the trauma abuse and sexual violence. When Dr. Grove and her team spoke to women and girls, they heard alarming accounts of sexual violence. Global studies back this up, with more than 70% of autistic women reporting some form of sexual violence or assault in their lifetime. Really understanding that risk and why people continue to be victimized and how we can develop treatments, supports that are all trauma-informed and make that clear when people are supporting autistic women, to identify those people that that's really needed. Do you think things like masking and people placing increased vulnerability to harm and poor health? Yes, definitely. That's a factor. People tend to mask because the world isn't built for autistic people, so that leads to an increasing masking. I think there's also the sense of people placing and being conditioned as a woman, as a girl, to be nice, be polite, all those extra kind of messages that girls are taught. So instead of trusting our gut in some of those situations, we've sort of been taught to do the opposite. So it's really complex, I think, but it's definitely a factor. While gaps in healthcare and support for autistic women and girls stood out to Dr. Grove, so too did their resilience. I mean, the biggest protective factor, I guess, was getting a diagnosis and then being able to look back on your life with that kind of autistic lens and like, oh, some of those things where we possibly did blame ourselves for that and then finding autistic community a sense of identity, someone said, like, "Shed all the layers and be myself." How do poor health outcomes connect back to gaps in research and understanding? There's definitely a big gap in research. It's emerging, but we don't really know a lot about physical health experiences, particularly things around sexual and reproductive health. There's definitely a big need in terms of how to understand autistic women gender diverse peoples or autistic peoples in general differences in their nervous systems, pain experiences. When it comes to representation in research, there's still a long way to go. Autistic people from diverse backgrounds are often missing. So I think that's something that's really important. Future research is how do we make people from those communities feel safe to engage with research and do that in an inclusive and accessible way? While we wait for the research and medical systems to catch up, women's health is still often ignored or autistic or not. Like Anne and Chloe, we become experts in managing our own bodies or spend thousands seeing doctors and specialists only to be dismissed. People just disengaging from healthcare altogether because of those experiences or continually trying to advocate for themselves. Over and over again and just not getting the support that they needed. And even navigating systems, all the different systems are so disconnected. So you might find a great GP, but then what's the specialist going to be like for this and that? So everything is so siloed in mental and physical health. And I think that makes it even more difficult to navigate. I want to know in your view, if we actually listen to autistic women and build research and healthcare around their lived experience, what would better health look like? It would just reduce some of these inequities that are happening. Barry is actually accessing care. It would just mean people were able to kind of flourish, get the support they needed. And it doesn't mean that they don't have challenges, but it's just understanding how to kind of work with those challenges. And also understand strengths. You know, autistic people are amazingly resilient and huge advocates and have the best sense of social justice. Like, we have a lot to offer. I feel like the autism was a version of me that just Kaya sat in the background for a little while and didn't get to be involved enough to rewrite who I could have been. And, our mum of two, got her ADHD and autism diagnoses in 2023 after getting sober the year before. But that was only the beginning. And started to see her life through the lens of autism. She began to question it all, the trauma, the mental health crises, the self-harm, the alcohol abuse. And whether her life might have been different. I spent a lot of time crying and going through everything that had happened, how could it have been avoided, how maybe if I was diagnosed sooner, it could have been avoided because I might have recognized that the way I was being treated was wrong. And to spend years working on herself and still does. She's passionate about helping others and is determined to give her two neurodivergent boys a more supportive childhood than she had. Parenting my kids is parenting my, you know, child. And I am changing what I can to make sure that they don't have to live what I did. I want them to know that it's wrong. And if what I know and I can teach them, they can teach their peers and it kind of just keeps going. And they're actually quite smart little creatures. For years, when I got overwhelmed, when I got overstimulated, or when I had a meltdown in front of Dylan, I would apologise for being a burden. And every single time he would say, "I'm not a burden," you're a privilege. And he would say that so much that I don't feel like a burden anymore. And that's what being unmasked around someone is. And that's what being safe around someone is. And it's to the point now where he will understand my needs and will accept my needs before I do. The fact is, autistic brains and bodies are different, not worse or less, just different. And while the medical community enters towards autistic-centred solutions, we need to be able to lean on the people around us, like Chloe, with her husband. This is the last episode of Autistic AF with Grace Tame. That's me. Thanks for listening. And if you missed any episodes, go back and listen from the start of the series. Oh, and if you like the series, please do us a favour and follow and rate ladies we need to talk. It helps other people find the show. This podcast was made on the lands of the Gadigal and Darwool people. It's mixed by Anne Marie DeBettincourt, produced by Emma Morris, and our executive producers are Tamar Krenswick and Alex Lolldak. The series was created by Emma Morris.