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Changes: Katherine May

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Annie [00:00:03] Hello and welcome to Changes. It is Annie Macmanus here. So my guest today is a international bestselling author. Her name is Katherine May. You may have heard of Katherine's book, Wintering: The Power of Rest and Retreat in Difficult Times. It was massive. It became a New York Times, Sunday Times and DER SPIEGEL bestseller and was shortlisted for loads of literary prizes as well. It's her more recent book that we are talking about today, which is called The Electricity of Every Living Thing, and that is a memoir of a period in Katherine's life where she undertook a big physical challenge. She went on a huge walking challenge and in that physical journey discovered something huge about herself that meant she had to change the entire way she looked at her life that had come before and herself as a person. Katherine discovered that she is autistic. Now it's all written down in this book, as I said, The Electricity of Every Living Thing. And it's also just been adapted into an immersive, sensory, 3D, exclusive Audible original drama. So you can go and get that on there. It's available now. Katherine was only diagnosed with autism in 2016. Statistically, so many women who are autistic just aren't diagnosed until later on in life, as you will hear in this episode. It is relentlessly misdiagnosed and also misunderstood. So, so many people who are autistic just don't even know they are autistic. There's so little awareness, especially among women, adult women, that they could be autistic and the ways that they could be autistic. They mask it really, really well, as you will hear. It's a fascinating episode this. I learnt so much from Katherine and I'm really grateful to her for sharing her stories and being so generous and open about her own experiences. I think it's going to help and touch a lot of people who are listening. So without further ado, please welcome to the podcast, Katherine May... Katherine May, welcome to Changes. 

Katherine [00:02:06] Hello. Thank you for having me. 

Annie [00:02:07] It's an absolute pleasure. So much to discuss, but first of all I just want to say how jealous I am of where you live *Katherine laughs* as someone who just adores swimming in the sea. I'm looking at your videos and your reels and I'm just- it's quite immersive, like the way that you film. Do you bring your phone into the water? That you did a- 

Katherine [00:02:27] I sometimes do. I have got a GoPro as well though, but I do do stupid, risky things with my iPhone because I just get like, ahh it's so beautiful, I've just got to show everyone what it's like! *Laughs*. 

Annie [00:02:37] Yeah. So you live in Whitstable, right? Still?

Katherine [00:02:39] I live in Whitstable, yeah. And I'm about 5 minutes walk from the sea, so it makes it lovely on a day like this. The tide was up at six this morning, so I was just like straight down there as soon as the sun came up, it was lovely. 

Annie [00:02:53] How often do you swim in a summer, say? 

Katherine [00:02:56] I reckon two or three times a week. We have very complicated tides. It's only like an hour a day when you can swim, and that travels across the day. So there's whole weeks when you just can't get in. But yeah, it's good. I will not complain about it at all. It's lovely. 

Annie [00:03:10] And we must mention that Kathryn and I are talking on the hottest day of the year. It is just bizzerk hot, scary hot a little bit. I wanted to know, as someone who writes about and clearly gets so much joy out of the natural world, how you feel about this extreme weather at the moment? 

Katherine [00:03:30] I just think it's, I think it's absolutely terrifying, honestly. And I, I think it's terrifying for a whole load of reasons. I mean, you know, we're beginning to talk a lot about the environmental disaster that we've got coming. But there's also, I think there's a huge cultural change we're going to have to make as our country warms in the UK, like it's going to change how we do stuff in a really fundamental way and it's just massive. Days like this, I am obsessing about the temperature all day. I can't stop looking at it because I, I find it so frightening. Like, I feel like I've got to witness this in real time. 

Annie [00:04:08] Yeah, it is. It is really scary, isn't it? Well, listen, one of the reasons we have you on here today is because of the book that you wrote, of which you've written many brilliant books, Wintering. The first time I actually heard of you was when you were on Krista Tippett's podcast, On Being, talking about Wintering and I bought the book off the back of that. But this book that we're talking about, The Electricity of Every Living Thing which is out now in paperback and has just been adapted into this original drama on Audible, there's a line at the start of it which says, 'I wrote Electricity in the white heat of transformation, flooded with new self-knowledge. Now, as this podcast is about change *Katherine laughs*, I thought that was a nice place to start. And you could tell me maybe like a few of your motivations for writing this book. Why did you want to write it? 

Katherine [00:04:58] Well, the funny thing about Electricity is i'd planned to write a book about motherhood and the transformations that bought and halfway through I realised I was autistic. And that is not a simple realisation to make really. It requires the unpicking of your whole life before. And so on one hand, I was like trying to track this process of transformation and using the writing as like a tool to understand it. Because writing it let me just really burrow into loads of research and to obsess over things which I love doing, and I needed to write the book to unpick the whole thing, really. 

Annie [00:05:45] You say at the very end of the book about this word adjustment and it felt like such a real way to to talk about how we deal with change. And especially in your case, I thought the aspect of change was so interesting because as you say in the book, you don't change at all in discovering that you're autistic. It's more you have to reframe how you feel about yourself. Am I right? Would that be the right way of saying it? 

Katherine [00:06:14] Yeah, erm. Yes and no I guess. The fact that I was autistic was continuous throughout my life but I just didn't know. But one of the things that happened after the realisation was that I realised how many of the things that I needed as an autistic person, I'd been squashing. And I'd been ignoring sensory inputs that were like really harmful to me and therefore I was getting incredibly tired all the time. I was not living the life of somebody who needs to take it a little bit easy. And learning that I was autistic meant that all of those problematic bits kind of flooded back in, I started noticing them again. So I started noticing how uncomfortable a lot of my clothes were. I started noticing how hard I found very loud music. My husband is a part time DJ, so he loves his loud music *laughs*. And so actually for a while, and apparently this is like really, really common for late diagnosed people like me, I felt like I was ultra autistic for a while. Like everything was bombarding me again and I had to really work to find the balance. So there was a weird change that I don't think I could possibly have expected, really. 

Annie [00:07:31] Can you talk us through the moment of change, the trigger for you thinking about yourself in that way? 

Katherine [00:07:37] I'd had a really hard time when my son was born. I was pretty sure it wasn't post-natal depression, actually, because it didn't really fit with the symptoms. But I just felt incredibly overwhelmed and I really struggled with like the social aspects that are supposed to make it better, you know? So everyone says, oh, join a mother and baby group. And that would have been my worst nightmare. And I even felt like upset by having to go to the Sure Start temperature for like weight and stuff *laughs*. And I knew I wasn't reacting the same as everyone else and I'd had many points in my life when I knew I wasn't reacting the same as everyone else. And that began like a process of enquiry, I guess you'd say. I tried to talk to GP's and things like that and was just told like I was fine. So then one day I was driving to an opticians appointment and I heard a woman on the radio being interviewed about the fact that she was autistic. And there was this moment of instant recognition, like, I can't even, there wasn't even like a moment when I thought, oh, that's just like me, there was this immediate sense of like, we, me and her, we were like the same thing. And that was it. I mean, after that I did loads of research and things like that but I'd never heard an adult autistic woman speak about her experiences of the world before. And it was like this moment of complete magic. 

Annie [00:09:07] And what were your perceptions of, like, an autistic person before then? 

Katherine [00:09:14] Well, actually, I knew a fair amount about autistic people. Like, part of my degree was in psychology. I had always worked in education, I'd worked with autistic kids. I knew a bit about being autistic, but I only had that very external understanding that you're trained into. So when we present autism in the mainstream, we tend to talk about it as like a set of external symptoms that you can see that person doing. And so autism becomes flapping hands or rocking, for example, it becomes being very fussy with food or overreacting to things, you know. And what I came to realise was that actually those like external appearances, A aren't consistent across all autistic people, like we all do different things, we all express our distress in different ways. But also that they were a response to very strong sensitivities, really. And so for me, it was that moment of realising that my sensory inputs were like, turned up to a million. And that light for me is incredibly intense and makes it hard for me to see, that like noise takes me over and makes me feel sick, you know, that I can't hear one person's voice in a room if they're talking to me and there's other people talking, I can hear every single voice all at once. And then my brain will spend the next 5 hours processing every individual voice I heard. And it was understanding that internal experience that was just totally transformative for me. But I think the interesting thing was that I'd walked quite a long way, as I you know, for my book, I was undertaking this project to walk the South West Coast path. I'd walked quite a long way before I realised and I don't think I would have realised if I hadn't done the walking first. 

Annie [00:11:12] Why not? 

Katherine [00:11:14] I think the walking opened up a space. Like I walked alone mostly and for many, many hours at a time, you know, like for 7, 8 hours. And there's something about the third, fourth, fifth hour of that walk where your mind becomes this blank open space, and I feel like I was more permeable. Like it left me ready for a change. It left me open to just a completely different world view. I think it broke me down. I was exhausted and that helped. 

Annie [00:11:47] Yeah, yeah. I mean, you write so beautifully, you know, and kind of viscerally about the world around you. You really feel like, when you're reading the book that you're with you every step of the way. You're really travelling physically and you're also making this really intense journey in your head. Looking back first at your whole life, and we get a lot of glimpses into times in your life when you suffered, when you're looking back at your life again through this new kind of prism. Talk us through some of the different times, Katherine, if you don't mind, when you asked for help from doctors or therapists. There were many of these times. 

Katherine [00:12:23] There were many. I mean, I first started talking about myself as depressed when I was like eight or nine years old. And at the time, I was just told by everybody that, you know, kids didn't get depressed. I had what was called then ME. I'm not sure if it was the ME that, you know, we know better about now. But I was diagnosed with ME when I was 14, had a year of school. I was just absolutely exhausted. I was in lots of joint pain. I couldn't function. I went back to school, then had a breakdown when I was 17, another year of school *laughs*. 

Annie [00:12:57] God, yeah.

Katherine [00:12:59] And then like massively struggled in my first job, and second job and third job. And then had another bout, which by then was called fibromyalgia because again, they didn't know what to diagnose me with. But like total abject exhaustion, severe episodes of panic, you know, I think my doctors realised in some way that my exhaustion symptoms were psychosomatic, but they couldn't put that in like generous terms. They had to put that in terms of attention seeking, you know. You know, I was told by someone that I was mentally ill and I was faking it for attention. And that's like the worst thing to be told when you're in so much pain and you can't do anything and you just want to, like, go out and see friends. I'd repeatedly asked for help, even down to when the health visitor was sitting in my kitchen when my son was a couple of weeks old, and she got the mental health questionnaire out that everybody's supposed to fill in that's supposed  to diagnose post-natal depression early and she literally hovered it over the table and said, 'I can tell you're fine' and put it back in her bag. 

Annie [00:14:13] Wow. 

Katherine [00:14:13] And what most people don't know about autistic people, particularly women, is that as girls, as teenagers growing up, we learnt to mask our symptoms like so carefully. It just does us huge harm because we mask so hard that we always look okay, like even when we're in the most unbelievable distress. And it's a problem. 

Annie [00:14:37] Yeah, and then is there a point when you mask so hard that sometimes you believe your own mask? 

Katherine [00:14:42] Yeah, I believe my own mask, definitely. Like, I believe that I was an exceptionally, like, competent person. Like, I thought I was exceptionally well organised. I thought I was like, uber sociable. And I'm none of those things, honestly. Like, I really struggle with organisation, I struggle in group situations, but I'd created this vision of myself that I hope to be and I just kind of thought for a while that if I faked it long enough, I could be it. And then after a while it just became this mask that I wore every day and didn't know how to take off. And I couldn't have told you at the time that it was harming me. 

Annie [00:15:22] A very interesting, enlightening example of that in the book is when you talk about when you met your partner H first, and used to go out to the clubs with him and you used to have to get absolutely hammered to be in the room with the music. And then he would have to kind of drive you home between sets because you'd get so drunk. 

Katherine [00:15:44] Because i was asleep. 

Annie [00:15:44] Yeah, and it's so interesting because that's kind of, in Britain, you know, acceptable behaviour that that would happen, but that's you trying to find a way to stay in these social situations and these highly sensory situations. Was you just trying to find your way, so it's really interesting that  side of it I thought.

Katherine [00:16:03] I wouldn't survive in your life would I? *Laughs*.

Annie [00:16:04] Well, no Katherine, no. And I wouldn't want you to even try! Oh my God. But just how you in them scenarios, you know, would mask yourself because you're like, well, I got drunk, you know. 

Katherine [00:16:19] I always believed that it was just then. It's amazing how you can fool yourself. And when I got my diagnosis, one of my friends said to me, erm he said like, that explains why you leave every party. And I was like, what? She was like, you've disappeared from every party I've ever been with you at. And I was like, no I haven't. And then I thought about it and thought, oh yeah, I'm always like hiding in the loos. Like, if it's got a garden, I'm at the bottom of the garden. If I can sense a moment when I can exit, I will exit. 

Annie [00:16:50] But there is a moment, you know, you're talking about that in the book where after you do that kind of zooming out of your life up to date and you kind of accept that, yes, you were the person who kind of found a way to escape from the loud noise and the kind of sensory overload of a social situation. Then it actually happens when you're in the museum with your son and your and your husband or partner, and what was that like that moment I suppose, when you were in it and for the first time, you were really aware of what was going on? 

Katherine [00:17:20] I mean, it was enlightening but it was amazing to me how intense it actually was. Like, we were in that top part of the Science Museum, Wonderlab, and it was so packed and so full of like different experiments making noises and children screaming excitedly. And it was hot and it was dark. And I suddenly realised that I had lost sight of my son and I couldn't spot him. And I was scanning the crowd and I have face blindness as part of my neurodivergent profile, so I can't recognise faces very well, even my son's, which I know people think is terrible but I could sniff him out in a line up so that's fine *both laugh*. But I realised that not only could I not recognise him, but my brain had got so confused that I was seeing myself all over the room, like everything was scrambled and it was like I was in this horrible hall of mirrors and I knew my husband was there, so I knew my son would be fine. So I had to again, like I spend a lot of time hiding in toilets, but I had to go and take myself out and lock the door and just calm down again because I hadn't realised how over- like what that felt like in my brain without me telling myself it wasn't happening. And I know in the past I've pushed through that and I've got like angry with people. I've got upset or, you know, like the emotion has surfaced without the understanding of what's produced the emotion. And I'm learning to catch it earlier, really. 

Annie [00:18:57] Yeah. You talk a lot about a sensation of electricity moving through your body. You describe it like a lightning rod in the book. This kind of hypersensitivity to touch and to people in general. 

Katherine [00:19:11] I mean, to me, if I touch another person. 

Annie [00:19:15] Yeah.

Katherine [00:19:17] It literlly tingles. Like it feels like they're passing on electricity to me. And if, you know, if that's an unwanted or a surprising touch, it's really unpleasant. It feels like a burn. And it will stay on my skin for a few hours afterwards. Like, I can still feel that that sensation of having been touched. And as you can imagine, like that makes a lot of things really hard. It makes crowds impossible because you're constantly being bumped into. But then there's also this sense that people have a kind of forcefield- like, it's hard to talk about it without sounding woo. That's why I'm laughing, because I mean this in like really rational observational terms. Like, I don't think this is like an aura or anything. It's literally that I can feel the hit of people when I'm near them. Like, I can feel their heat and I can- obviously, like my sense of smell is really finally attuned. So if people are wearing perfume or like shower gel or shampoo, like I'm dealing with that, like every single thing about them feels like they've got a forcefield. And it's one of the ways that I used to understand it, before I realised that I was really picking this up I used to watch other people move through rooms and not react and think how numb they looked. Like, why weren't they reacting? Why wasn't this affecting them? Like, why couldn't I see them feeling about this the same way that I did? And now I've realised that that's the reverse. It's like me that's hypersensitive to everything. 

Annie [00:20:54] Yeah. Can I ask about the kind of moment or the period of, I don't know, acceptance isn't the right word but there was, it felt like there was a wrangling with you at the time when you heard the radio show. You know, the idea was in your head. There was this sense of is it worth exploring further? Am I actually, you know, maybe everything is okay as it is. Am I going to rock the boat? Am I going to fuck with my life to the point where this could be frightening, you know? 

Katherine [00:21:24] Yeah, yeah. And I, I think that's partly because, like, autistic women were so invisible. Like, I went on a hunt online to try and find people like me and there was so little out there. There were a few websites that were talking about it and some people that I found on Twitter who are still like my best friends now. But there was no, there was nothing there that could affirm that to me in a positive way. And then there was this other feeling, which I think reminded me of grief, actually, that you wake up every morning and you confront this massive change all over again and it reactivates all the feelings about it. I mean, I had immediate relief because I had grown up literally thinking I was an alien and knowing that I was like a different species to the other girls around me. But, that's, it's that relief, like of finding that is mixed with this fear of what that means for you and the death of the hope that you'll be cured. You know, that there's an easy way out of this because I was a big consumer of self-help books *both laugh*. I thought i'd find the one that sorted me out, you know. 

Annie [00:22:43] Yeah. Yeah. Yeah. There's a line in the book, 'I don't want a cure for being myself'. Because there is this lovely shift then. You really own the whole discovery. You really own it. And I think that might, you can tell me, it might be part of kind of, discovering a community of autistic people that you felt like you could fit into. And, you know, this this idea, you describe the autistic community as a constellation, which I loved as well, this idea of there not being strict rules of how people behave. 

Katherine [00:23:14] Yeah, that's absolutely right. I think that massively helped. But I also think that the more I read about autism, the more I realise that some of the best parts of my life are from my autism as well. Like it was a double edged sword and it still is a double edged sword, you know. So, I can write books because I can fixate intensely on something and get totally wrapped up with it and have like a grand affair with some information, you know, and not be able to let it go. And that's the most pleasurable thing in my life. Like the feedback that I get from Swimming in the Sea is partly an autistic response, and I'm so glad of it. The relationships I have actually are- like my best relationships are with other neurodivergent people, and that's a really different form of conversation, like that directness, that impatience with any flattery or any fluff like, and the urge to get right to the heart of it. You know, an autistic person's going to walk up to you and say, what do you think about death? You know, the first time they meet you, and I love that *both laugh*. 

Annie [00:24:31] Me too!

Katherine [00:24:31] So, yeah, I think I hadn't had the opportunity to understand the great things about being me. And it is me. It's like, knotted into me. And it's totally not something I could ever untangle from myself. 

Annie [00:24:46] Was there any anger when you looked back at your life and kind of all the stress that you'd been through? In terms of, you know, these visits to the doctors and trying to figure out how you worked and being told the incorrect answer every time. 

Katherine [00:25:03] Funnily enough, not. I mean, obviously I still feel that frustration, but I also see very clearly that there is nothing that would ever have let those people see me as autistic. Like the research wasn't there. The knowledge wasn't there. And even now, it's still really hard for autistic women to get diagnosed. You know, like when the book came out my mum, I mean, I'd spoken to her about it before, but she read it and she rang up and said like, I just feel so bad that I didn't sort this out for you. 

Annie [00:25:35] Aww, yeah. 

Katherine [00:25:36] But she couldn't have done. Like she knew all along, she absolutely knew. And she had constantly as a child, like, kept on trying to push for something to help me. And that's interesting because loads of people now say, well, you know like, if you're so autistic then why wasn't it visible when you were a child? Oh, it was. It was. But there was, there was no language for that. People didn't think that girls even could be autistic when I was, you know, because I'm a very old lady of 44 these days. There was, you know, like we were working class. There was no one-we couldn't have like paid to go to a private psychiatrist and got a diagnosis. Like there was no route to that and no route to any help. And so my anger's more focused on now, I think. That's the productive thing to do with it really because we know better now and there are still girls that are only getting their diagnosis when they land in an anorexia ward, for example. It's very common. And that's what we've got to work on, and that's what we should all be quite angry about, actually. 

Annie [00:26:46] Yeah. How would you change that? How would you change the system around that if you could? 

Katherine [00:26:51] Much, much better training. We know so much more about autism now. Teachers are still not routinely being taught about autism and how it might present differently in different children. There are so many psychiatrists and ed psychs who are really out of date on their knowledge. But we also don't have useful interventions for children when they are diagnosed. They're often based on forcing the child to like conform to how we want them to behave rather than therapeutically helping them to feel better in the world. And that's before we start talking about how hideously underfunded child mental health is. It's horrifying. People are waiting three, four, five years for an autism assessment for children now, which is, you know, the difference between being diagnosed when you're 6 and when you're 11. Massive difference. And when people do get those rare diagnoses, they're then just kind of packed off out into the world with a piece of paper that says they're autistic and nothing more than that. And we could definitely do better. 

Annie [00:28:01] Yeah. You mentioned at the start, Katherine, of when you were eight years old of feeling like you had depression. And I wanted to ask about that in terms of an eight year old, how were you aware of something like that and what was going on in your memory of that time to make you feel like that was the case? 

Katherine [00:28:20] I hope this doesn't upset anyone really, but I had a complete and utter sense of worthlessness at that age. Like, I really, I'd already thought about suicide at that age and I carried on seriously contemplating it right up until my teens when I tried. And that was a continuous, unbroken feeling that was based on this strong sense that I could never fit into this world, like that I had no part in it. That I was so different and disgusting that I had no hope in the future. And it was really all pervading. There were times when I fell into, like, deep depressions when I couldn't do anything. In my long list of crises I forgot to mention that I was anorexic when I was like 13 or 14 as well *laughs*. Yeah, I really rolled through every mental health crisis you could based on the fact that the feedback you get from the world is that you are not acceptable. And it just carried on. It carried on and on and on and I never managed to get any effective help from it. I manage really well now, but I've had to do a lot for myself because it hasn't been accessible to me as an autistic person who isn't presenting in the way that's expected. 

Annie [00:29:54] Have you found whilst making friends with other autistic people and kind of getting to know people in the community that that is, and not in any way wanting to diminish your own experiences, but that there's a pattern in that in terms of people feeling-

Katherine [00:30:09] It's absolutely normal for us. It's really, I can't think of a single autistic person, male or female, that I've met that hasn't had severe depression, anxiety, suicidal ideation. Eating disorders are so common in my community. OCD is very common. On top of that, we're often misdiagnosed with bipolar disorder. So, many autistic people spend years taking the wrong medication for bipolar because the diagnosis isn't available to them. I could go on. It's a horrible, horrible picture that we face. But the interesting thing is that most of us experience a massive uplift on learning we're autistic. It just lets us think that we're not wonky neurotypicals but full blooded autistic people. And it lets us make adaptations. Simple, simple adaptations like, you know, wearing earphones in public places, cutting the labels out of our clothes, keeping the temperature nice, which I'm failing to do today but I'm being heroic about it, being able to choose the food we want to choose, that kind of thing. Tiny, tiny changes make a huge difference to us. 

Annie [00:31:36] What has nature done for you and living in it in the way that you do in Whitstable? 

Katherine [00:31:42] It's so vitally important to me. Like the soundscape when I'm outdoors is so soothing to me. There are just different rhythms. It's more spacious, it's quiet. It invites me to listen closely rather than coming at me. 

Annie [00:32:01] It doesn't attack. Like dance music could do. 

Katherine [00:32:07] *Laughing* Yeah, yeah. I mean, I. Yeah, I find like, amplified anything quite hard to deal with. But also for me it's like about moving through it. You know, autistic people generally need to stim, which is like a sort of soothing, self-soothing movement, which is where you see people flapping their hands or rocking, but loads of us do different things. And for me, walking and swimming just massively help because I need to be in motion. I cannot sit still. I need to like be ticking over. And I use to try and express that in closed rooms and felt like my electricity was building up and it might explode. Going for a walk every day, simple as it sounds just helps me to regulate that need to keep moving. 

Annie [00:32:58] Katherine, how has life changed for you in the process of this discovery? You know, you talk about the small adjustments but kind of zooming out, are you more content now that you know? 

Katherine [00:33:11] Yeah, oh God yeah *laughing*. 

Annie [00:33:12] I don't want to presume! I get the impression that you are with the book, but. 

Katherine [00:33:17] Yeah, no, definitely. And I mean, I'm still making adjustments now and I'm still noticing things. 

Annie [00:33:22] Yeah. 

Katherine [00:33:23] But I immediately began to start making more space in my calendar, saying no to things that I knew were going to make me uncomfortable. Not having two nights in a row out, things like that are really big for me. I eventually gave up my job like I, I was diagnosed just before I took up a busy full time job running a university department. And the day that I said yes to the job offer, I had this gnawing doubt that it was the wrong thing. And it was, it really, really wore me out again, hence the beginning of Wintering. But I quit that eventually. I have changed the way I work completely. I've changed everything, honestly. And life is just so much easier now. But what I've been working on more recently is being honest about saying no to things rather than making an excuse. So now if you invite me to a party, I will say thank you very much, I love being invited, but I won't come because I don't enjoy parties. 

Annie [00:34:31] Oh, the power and the liberation is just *Katherine laughs*. I think anyone listening wishes they were able to do that. I mean, it's a wonderful thing to be able to do that. 

Katherine [00:34:42] I've only just written down a list of my needs for when I'm doing interviews and public events. I've still struggled through that and masked really heavily because I haven't wanted anyone to like, reject me or to think worse of me. And only a few weeks ago did I finally write down my list of how I would really like to be treated, if possible please, because it will just help me to cope better. And that was really liberating. You have to make these changes slowly. It's scary. It's scary as hell. And people don't always react well to it. So you have to go out, retreat back to a place of safety, go out a bit further. It will be a life's work, yeah. 

Annie [00:35:28] Yeah, well, as someone on the other side of that who was given that to read, I was only grateful. 

Katherine [00:35:34] You're my first recipient. You're my first recipient. 

Annie [00:35:37] Oh great. I feel honoured. I mean, I was so grateful because it's such a sensitive world. And the last thing you want to do as an interviewer is say something in the wrong way that will just put you off kilter. You know, like, obviously, the first and foremost is you don't want to offend, but like also it's just really, like you say it yourself in the book, you say 'language matters, careful words foster change'. And if you don't know the language, if you're not fluent in it, you need to get all the help you can, so yeah. 

Katherine [00:36:08] Yeah, absolutely. And I, I think I've realised really how anxious it makes people meeting me sometimes. I mean I've really noticed the difference that when I go somewhere to talk about Wintering, I get treated really differently to when I go to speak about Electricity of Every Living Thing. And I think that's because there's this anxiety that people don't know what sort of a human being they're about to meet. And then they're often turned over by the fact that I seem like quite a normal human being. And so then they'll blurt out things like, 'well, you seem okay'. And it's like, aaaah!, it's horrible, erm and we all get upset about it. So yeah, it just makes it much easier to, I think, go out and say, right, this is how I refer to myself. I am an autistic person. I'm not a person with autism. That won't necessarily be true of other autistic people, but that's my choice of language. Please don't, you know, ask me questions about, you know, weird things like, have I got a superpower? And it actually helps because when we feel awkward, we don't know what to say. And we often do worse than if we were just, you know, informed, I think is the word. 

Annie [00:37:26] Yeah. Okay. Last question and I'm so grateful to you for this, and again it might be ridiculous and I'm not asking this in any way to assume that you are qualified or a medical professional. However, if someone's listening to this and they relate to what you say in the way that you related to the woman on the radio, what would your advice be to them in terms of what to do next? 

Katherine [00:37:51] It's a complicated question actually, because I think diagnosis, like formal diagnosis isn't necessarily the right thing for everyone. I think a lot of us just need to know and understand so that we can make those adjustments we need to. So I have actually written a guide on my website if anyone wants to go there and take a look.

Annie [00:38:15] Wow that's incredible. Okay, we'll link to that in the show notes. 

Katherine [00:38:17] Well, I mean, the list of women who've realised they're autistic after reading Electricity is becoming legion now. And I'm so, I am so glad to be able to put like my case study out there, if you like, so that people can recognise themselves. And honestly, I just think the best thing people can do is go and witness the voices of other autistic women, like read my book, Joan Lindbergh books, Sara Gibbs book. You know, whoever's book you want to read because we're all slightly different as well. There are great Instagram channels, there are great YouTube channels, there are autistic podcasts. Like, spend some time immersing in that world and that will teach you as much as any diagnostic procedure, which at the moment, unfortunately, were mostly developed for eight year old boys and they do not fit us very well at all and they might not be appropriate. But equally it might be the most useful thing you ever did. 

Annie [00:39:21] So we will link to that on the show notes. The book is out now and just such a- I mean, we haven't even mentioned just how beautifully you write as well like it's just such a gorgeous read, The Electricity of Every Living Thing. And of course, the immersive 3D original drama is on Audible now as well. So as we speak, you can go and get that. Katherine, I'm so grateful. I wish I could jump in the sea right now *Katherine laughs* and please can you do it for me? 

Katherine [00:39:50] I absolutely will. 

Annie [00:39:51] Stay safe and don't get too hot.

Katherine [00:39:53] *Laughing* I'll have a little splash for you as a tribute. Thank you, it's been so lovely to talk to you. 

Annie [00:39:58] And you. Thank you. 

[00:40:05] *Outro music*. 

Annie [00:40:05] Thank you so much to Katherine May for that hugely insightful conversation. What a journey. And to have finally been diagnosed as an autistic person after years and years of being mistreated and misunderstood, to now being such a successful author is so impressive and I wish her the absolute best. And she's got another book dropping next year, by the way, which you're going to want to know about too. But for now, go and listen to her immersive adaptation of The Electricity of Every Living Thing. It's an Audible original drama. You can listen now for free with your 30 day trial at From £7.99 a month after 30 days, renewed automatically. See for eligibility. Thank you so much. Speak to you next week.