Midlife Trauma Leading to Autism Diagnosis With Cat

Cat is an Australia-based, late-identified autistic individual who suddenly lost the ability to mask following the death of her baby.

Kristen and Cat discuss being autistic while undergoing fertility treatments, trauma in midlife, out-of-order loss and bereavement, polyvagal theory, the ways life crises often precede late identification of autism, and more.

Correction: Cat said "microwave" when she meant to say "oven", in reference to her grandmother.

If you'd like to know more about topics discussed in this episode, check out:

Strong Female Character by Fern Brady

"Intracytoplasmic Sperm Injection (ICSI)" —Cleveland Clinic

The Book of Woe: The DSM and the Unmaking of Psychiatry by Gary Greenberg

"In Vitro Fertilization (IVF)" —Mayo Clinic

"The Polyvagal Theory: New Insights Into Adaptive Reactions of the Autonomic Nervous System" by Stephen W. Porges

Episode intro and outro music: "Adamant" by Christoffer Moe Ditlevsen, Anna Dager, and Hanna Ekström 

All episodes written and produced by Kristen Hovet.

Send in your questions to otherautism@gmail.com

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The views, opinions, and experiences shared by guests on this podcast are their own and do not necessarily reflect those of the host or production team. The content is intended for informational purposes only and should not be taken as medical or professional advice. Please consult with a qualified healthcare provider before making any decisions related to your health, fitness, or wellness. 

Transcript

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Kristen Hovet  
Today I'm speaking with Cat, a late identified autistic individual from Australia. Before we get started a warning that this episode gets a little bit heavy right out of the gate. We discuss medical trauma, cancer, infertility, IVF, stillbirth, and some toxic relationship dynamics. So please take care. Please say hello to my guest for today, Cat. 

Cat  
My name is Cat, I live in Melbourne, and I kind of live between Melbourne and the country. And I have a beagle. And I've recently become semi retired, I left my occupation in allied health, which I'd been in for about 30 years after realizing that just really wasn't the right job for me, which I knew all along. But it's really difficult to change occupations once you're in an occupation. And then COVID came along, and we just were able to make the choices that we wanted to make to get out of that profession. So I've dealt with a lot of people. And it's had kind of a physical impact on me over time, where I probably should have been in a job where I wasn't dealing with so many people, just because of, you know, recent realizations about, you know, likely kind of autism one diagnosis, which I became more aware of after a personal crisis. I love music, I love good comedies, good shows, netball, I'm learning to draw, I love baking bread. Yeah, just have like, you know, lots of diverse interests. But sometimes I get into an interest, like watching Bake Off, and it's intense.

Kristen Hovet  
When you emailed me initially, so I'm just going to jump right into this question, you said that you resonated with my own story of being diagnosed following a life crisis. In my case, it was cancer and all the fallout after that, and one of the effects for me was that I was suddenly unable to mask in certain situations. It was like the cancer itself and all the treatments just exhausted my mind and body to the point where I just, I just couldn't do it, even if I wanted to. Eventually, I was able to again, but it was definitely an interesting experience. I remember being frustrated with myself, so much of the time. Of course, I didn't know that term masking then. And I didn't know I was autistic then. So I only have this awareness in retrospect. Are you comfortable talking about the lead up to your own identification of yourself as autistic? And how this relates to masking?

Cat  
Working with people, I think you tend to mask a lot. But you think, okay, you're doing your job, right? When I was 35, I'd been trying to conceive for about two years with that current partner, and discovered that in a four hour surgery that I had only half a uterus, and basically had no functioning ovary. And so it meant that I had to do IVF. And I, at the time, left my partner, met a new amazing partner, and I was really lucky to meet him. And we just plummeted into love and had a really amazing beginning to our relationship. And it's continued for 16 years now, which is amazing. So I was really lucky there, however, we did IVF and had a failed cycle. And then we did a so called successful cycle where we got pregnant. And I had a really, really nervous pregnancy, I felt really different to everybody. And everybody I knew was pregnant. Everybody I knew was fertile. They got pregnant, all of my friends were pregnant at that time. They all have 15 year old children now and I got to 35 weeks and um, and her heart stopped. Now when I um, I'd been counting all the statistics, right? I was really, really, you know, careful. I thought, okay, I've got a half uterus, I'll treat it as a twin birth. I was saying I'm high risk, I'm high risk to doctors. And I think I was treated as medium risk or, you know, normal. And so when her heart stopped, we went to the hospital and I didn't know it had stopped. I just couldn't feel her movement. We went in there and the nurse couldn't find the heartbeat, and then the doctor came in, checked again, and just swung it around and said, ah, the heart's open, you can see the four chambers are open. And we were, like, what? And it was just such a shock. And at the time I just remember making these noises like, like a hurt animal. And it was just so shocking. So then I had the following day where we gave birth to my baby a whole day and then a two hour surgery afterwards to remove the placenta, all those very complicated, awful things. And then we spent two days with my baby, which was just lovely that we got to spend that time with her. She was a two kilogram baby, beautiful blue eyes, black hair. 

Cat  
And so after that, we got out of hospital, and we just thought everything was grief, just normal standard grief, and that I couldn't emote. I couldn't perceive safety in anyone, I only wanted to hug my partner and one of my brothers. And I just started losing that ability to speak to people, I didn't want to be around people, I had no prosody. I stopped being able to swallow properly, like just my whole body shut down. And these things, I was just thinking, okay, this is normal, because we were concurrently directly afterwards doing IVF. So I'd spent the next year, you know, we were doing IVF, we were traveling between Victoria and Perth, which is a really long way because we had embryos over there, and we'd moved into state. So we had no people, we were selling a house, on the list of, like, really stressful kind of things, we were ticking most of the boxes. And so I just thought it was normal. And then it just kept on continuing for years afterwards, I just couldn't, I just didn't know how to be around people anymore. And so it took years for me to work out that something else, you know, I knew something else was there. And I'd speak to my counselor and I'd go, I feel autistic. Like I actually said that to them. And then after a while I just kind of, you know, went via PTSD, I was really angry. You were kind of saying, you know what's wrong with me? And I was, like, what's wrong with everybody else? So I was really angry. And so I kind of learned to mask again in a work setting because I had to pay for IVF. And we continued doing that. But once we ceased doing that, so we had another miscarriage at 12 weeks, one year after our baby was born. And then we just kind of had successive failures after that. So I did 11 cycles, six stimulated, and five frozen defrost cycles. And so you're just, like, doing that. And so 10 years of my life was really focused on this thing. That means I'm already different to other people who have just had children and just been, you know, looking after kids. So afterwards, it was just, like, learning to be around people again was really hard. And eventually I realized that there was something else there that was making my heart, I was getting heart palpitations, I got POTS, like you've spoken about. And also just lots of physical things that seemed a little bit disproportionate almost even though I don't think it really is. So then I looked at autism and the female phenotype finally, kind of the information came out about the female phenotype. And that kind of really resonated with me.

Kristen Hovet  
I don't want to turn the attention to my own story at all, so. 

Cat  
Oh, no, please do! 

Kristen Hovet  
Unless it makes sense. Okay. 

Cat  
Just do it! It makes sense!

Kristen Hovet  
It was interesting because you were sharing more of your story when we were emailing back and forth. And I remember reading about the IVF experiences, and it was hard for me, I think it took a while to get back to you. Because for me, that's a particularly triggering topic, um. So to share my, a little bit of my story, if it helps at all. So after I had my first treatment for cancer, which was major surgery, so it was radical hysterectomy, I was informed that my margins were not clear enough. I would have to have chemo and radiation as well. So because we weren't thinking that I needed to have radiation, they didn't move my ovaries out of the way. Usually they would, so that they wouldn't get so called fried by radiation. That meant I only had a small, small window of time when my, when I would still have basically eggs available. I wasn't, like, at that time, like I have a son from a previous relationship. So I was just kind of like, okay, but my partner, his wheels were apparently turning, my partner at the time, who's no longer my partner. He came to me one day, and I was of course at that point, I had been in the hospital with sepsis after the surgery, so I was just like... 

Cat  
Wow!

Kristen Hovet  
My body was just, like, over it, right. And I was hopped up on all kinds of meds and antibiotics. I was doing blood thinner injections twice a day. And my partner was just, like, yeah, so I think we should try to have a baby. And I was, like, you know, you know I can't do that, right?

Cat  
I mean yeah! 

Kristen Hovet  
And he was, like, well, I've been reading that we could, you know, try to get the eggs and I'm just, like, wait, I'm supposed to start radiation, I think it was literally a couple of weeks away at that point. And so I was, like, if this is really important to you, I, I'll do it. But I was trusting him that he had my best interests in mind. And he was really thinking about our future, right? And at the time looking back, and again, I was totally drugged out. But, like, I recall feeling that his emotions were odd, like it felt a bit like a performance. And I know now that, you know, he's potentially, I'm not going to name names, but I believe there's some narcissistic personality disorder going on or something like that. So it was really like a weird effect, just emotion wise. And I just remember thinking, it gave me chills, like the whole, you know, the whole conversation just kind of gave me chills. But I was, like... 

Cat  
Yeah! 

Kristen Hovet  
...still thinking of things from my own heart and, like, if this guy really wants kids, and he wants kids with me, like, okay, and maybe he's just acting weird because this is all so much for him. And that was, like, the extent of my thought process, really, I couldn't go very deep with it. And I was just, like, okay, I guess let's talk to the doctors about it. And we went and the doctor said, you know, this is not normal, but we have been able to do this successfully with a surrogate. But you'll have to delay your cancer treatments. And that could put your life at risk. So I was, like, okay, I think we're good with that. I guess we can do that. So that's my emotional...

Cat  
Why wasn't he considering, okay, you're the priority?!

Kristen Hovet  
Yeah. I mean, that's what I would have loved to, like, looking back, obviously. But yeah, I wish I had chosen differently, you know, I feel like I could have and I put my own health and, obviously, life on the line to try to give this to him. And, you know, the IVF itself was hard because, physically, like, I was very swollen in that area. And I still had stitches and the ovaries swell up to like that [makes a fist], like, you know, and it was pushing on everything. So I was just in tremendous pain that whole time. It was just like a month of just agony, even with the painkillers and stuff like that. So we ended up getting, like, seven or eight eggs, and then they did ICSI [intracytoplasmic sperm injection], which is, like, they do the sperm injection right directly into the egg. And so we got two embryos from that. And ended up not doing anything with them, of course, because I ended up leaving him. So yeah, anyway, that's, that's my story. And I haven't shared it very often, I think, like a few people know. Now I'm sharing it.

Cat  
Yeah. Amazing. It's awful. It's such a horrible thing to have gone through.

Kristen Hovet  
I know the physical effects of the medication, of IVF. So, I mean, even that is a whole thing in itself. 

Cat  
Oh, yeah. Uh huh. Because they make you feel worse. And you're in a situation where you're considering maybe you're going to die, or in my case, my baby had died. And then you're actually taking a drug, not an antidepressant, something that will make you feel worse and more stressed. And it's really hard to um, to explain to people that level of stress, just kind of building and building, you know, during a cycle...

Kristen Hovet  
Yeah, totally.

Cat  
Like how it does, you know.

Kristen Hovet  
I'm so sorry that you went through that. That's just... 

Cat  
Thanks. 

Kristen Hovet  
I mean, just thinking back, like, I know, that must have been just one thing after another, and I'm just so sorry that you had to go through that. 

Cat  
Aww, thank you. Yeah, it's um, and it's that crisis where, you know, you're trying to understand it and I was reading everything about grief at the time and going, ah, it just seems like I'm in the complicated grief or, you know, it's going on forever. But I'm also kind of, you know, you're simultaneously grieving a bunch of things, you know, like you were, and then also your relationship, which is just, you know, another complicating factor that would have been awful. And in my case, it was becoming, it's kind of like this existential thing. I gave birth to a dead baby. So was she ever alive? Did I give birth? I did give birth and I am a mother, but people don't really perceive me as such. And so from then on, because I'm a bereaved parent of a baby who, you know, died or was stillborn, I'm not really perceived in a normal way. So that's why, for me, it's become very hard to mask because there's always this situation, quite regularly, where people will say, do you have kids? And for me, it's like hugely triggering, or when someone's having a baby. It's just, like, no, those memories for me are not good. And so it's, it's hard because what I would normally do is mask, and I can do that, but in this case, it's very difficult because it's such a triggering and awful situation that I've been through. And the same for you. And that loss has really, kind of, that's where I'm, like, okay, well, this is why this other diagnosis is also useful for me because I realized I have to find a different way around that. But being less around people is actually just one of the easiest things for me to do.

Cat  
Yeah, for sure, for sure. And I had some people, I don't know if this is the case for you, but after going through those things, you know, and trying to figure out what the problem was, like, some people suggested that it was depression. And I said um, yeah, of course I'm depressed. 

Cat  
Yeah ha!

Kristen Hovet  
But I've been depressed before, and this is not happened quite like this. Like I've experienced the numbing out, you know, the sort of dead inside feeling, but this is something completely different. Like where all of my faculties are just, like, shut down. And I don't have a willful power over it at all.

Cat  
Yeah, and it's really hard if your face stops emoting and you're, you know, you're dealing with other things, it's very hard to kind of work out, how do you do that now? Like, you have to kind of relearn, it's like if someone's injured and they have to learn to walk again. You have to learn to do these things that you've learned to do since you were a little kid and now your body's just going, ah, I'm not going to do that anymore. I had to learn to chew food properly, like I kept on choking. And I ended up going to a specialist and they said I had Schatzki ring, which is a physical stricture in your gut. And then after a while, when I started just being really careful with my eating again, it went and then the next gastroenterologist said, no, you don't have that. So there were weird, actual physical things that happened. And I had problems breathing, speaking. And also my blood pressure started to go up really badly when I was around people working. And so, to the extent that doctors did, like, multiple tests on me, you know, thyroid disease, all of those things. And then eventually, I just went, oh, okay, well, I'm taking Inderal and that, I think, ended up with like a paradoxical increase in my blood pressure. So I stopped taking that and just started being a bit more, you know, I just had to take those steps to, you know, self care, and that really improved things. And being around people less, for me, is just easier. Physically, I don't get high blood pressure. There are physical, actual physical ramifications for me where I can measure it, and then I can kind of alleviate it, and change it and improve it, which I think, you know, for kids who have, you know, the more severe autism, it's really hard for them to explain to people, you know, what they're suffering through. I feel a little bit, you know, I feel such an empathy for kids who have those terrible versions of autism where they can't explain that to people and where their carers can't, you know, it's really hard for them to elicit that information, where in our situation, we had physical symptoms, we could go, I'm experiencing this and this and this, what could it be? I can read about it and work out what it is and chat about it to a psychologist. I think it's useful for us to say these things because this might be what someone with less ability to communicate it might be experiencing,

Kristen Hovet  
You said that you identified yourself with being autistic, so what was the lead up to that? Did you find something online? Or a book that really stood out? And what was it?

Cat  
I think it was just articles about females. And, like, I feel like I was almost like an episodic, you know, like, it comes on in waves. And then I'll have periods of my life where it's like, you know, there's nothing wrong. I know that I'm a bit different or quirky. And a lot of people, I think, are like that. But then you have a crisis and it kind of brings it on. So it's like autism one I guess kind of fits in for me. I found an article and I just kind of read it and went, oh, okay, yeah, I have that. But a lot of the things hadn't resonated for me previously, which is why I hadn't really thought about it. So a lot of the sensitivities I don't necessarily experience.

Kristen Hovet  
I know, for me, I have something similar. And I think it's just, I would describe it as, you know, times when I have a lot of ability to mask. And so the times when I don't have that same ability is, I guess, kind of marked by burnout, autistic burnout. So maybe that's kind of something similar. 

Cat  
Yeah. Yeah. 

Kristen Hovet  
How did you initially feel about your identification of your being autistic and have your feelings changed at all?

Cat  
I felt relieved to understand because, as a child, I was more inclined to have one friend, I was really, really shy kid in preschool. We lived a year in England, and I didn't mix with any child. I cried every single day because they played All Things Bright and Beautiful. And I had this sequence of songs that used to make me weep. And that was one of them. And Mum was just, like, can they just not play that song one day?! But they played it every single day when we arrived and so I would start weeping and then I would not stop crying, but no one went, ah, yeah, that's kind of a bit weird. Back then, it was just, like, yeah, she'll get over it. And I didn't. I spent a whole year crying and that was, I stopped crying for my photo. And my little cheeks are kind of tear-streaked, but that's the only time I stopped crying in a year of playgroup. And so I was just a really, really shy kid. And so there were all these things, little things that kind of added up for me, which is why I really like you talking about the social model because it's not necessarily a pathology. It's just something that just needs to be accommodated and empathized with or understood. But I could have gone my life without really knowing or really kind of diagnosing myself except that I had the crisis and stopped being able to do the masking that I was doing.

Kristen Hovet  
And how has your life changed for you after recognizing you're autistic? I know you mentioned some changes with work, but what was that process like?

Cat  
Quite liberating, really, just knowing that I like time by myself, I like doing the things that I want to do, if I want to watch a program repeatedly, I will. And just enjoying the time with my dogs, getting out of the work that I was doing, which COVID actually enabled me to do, because we had major lockdowns here. So my husband and I got out of our allied health job and just moved into other roles. And just knowing that, okay, that was, you know, I did it. I went to uni and did all of those things. And it was fine. But I just couldn't, I just couldn't do it anymore. And I'd run out of, I'd really hit burnout again. So it was just, it was liberating. I don't know that I wanted a diagnosis earlier, though, because maybe I wouldn't have done the things that I've done and the travel and I don't know where it's a useful thing. It would have been useful when I was doing IVF. And it would have been useful after my baby died. But in my general life, I don't know when it would have been useful. And it's really hard to kind of tease it all apart when you're 50 when you get a diagnosis. What's your family upbringing and what's your condition? Because my family is kind of unusual anyway.

Kristen Hovet  
Has your self concept changed at all?

Cat  
Yeah, I think I kind of look at it and just think, okay, well, there are things about me, I'm quite blunt. My tendency after our baby died was anger. I don't know where that fits in. Have you heard of that in autism much? I don't know whether that's just my family or what it is?

Kristen Hovet  
Yeah, I mean, I've had times when I've had I would say rage, haha.

Cat  
I love the way you say rage there, so gently and delicately.

Kristen Hovet  
Just a little bit of rage. 

Cat  
Yeah. 

Kristen Hovet  
I think it's just, you know, when a bunch of emotions just kind of build up and then that's the most accessible one for me sometimes, when it's like a muddle like that. So I've definitely experienced that, or kind of oscillating, like, rage, sadness, rage...

Cat  
Yeah, yeah. I don't know whether you speak about having cancer to people that you meet very often. I guess it's a subject that you can kind of avoid. But with children, it just comes up. And so I had to kind of go through getting over people's responses to that because people don't mask like people who are autistic. And you can have really awful experiences when people ask whether you have children, and your answer isn't the right answer. Or if someone says, ah, such and such is pregnant, and your answer isn't the right answer. And you don't have the facility to mask at that point, you're seen, you know, it's just, like, you're not acceptable to society if you're not a parent at the moment of a living child. And so I had to kind of learn to mask to deal with that, or be prepared for it, but, you know, you can just be out at dinner, or I really don't like meeting new people now because I have to deal with that quite regularly. You know, I want to meet new people, but it's quite, sometimes when you get asked that question, and someone's answer is a good one, you'll really like them and that's really exciting. But that's not the most common experience that I've had.

Cat  
What are some of the better responses? Or what response kind of helps you feel better in that moment?

Cat  
Even if people say, oh, my gosh, I don't know what to say. Like, if they say, look, I'm at a loss. But a lot of people will go, ah, you know, I guess you're livin' the dream now. You know, no, no children. It's just, like, yeah, that one's a good one. Or, you can have mine! I really hate that one. I've had people just walk away from me and go, that's horrible. And just walk away. There's many responses, but the good ones are one person said, you can have mine. And they actually meant it. And they made us, like, the guardians of their children. And that was lovely because we became really good friends with him because he went, you can have mine and I went, look, I just really don't have a sense of humor about it. I'm really sorry. And he said it again. And I was like, look, I really don't have a sense of humor about this. I'm so sorry. And I was trying to be, you know, calm and then it turns out they were lovely and we became really good friends. That was a funny one because I wasn't anticipating. But I've also met friends who have, you know, had tragedies in their own life. So you can kind of talk to them about it on a different level where they've lost children or, you know, people who have experienced grief in a really severe and, you know, early out of order loss because that's, you know, your baby dying is out of order loss. People who have experienced that are more likely to kind of have some sort of concept because if your child dies or your partner dies particularly, you know, someone's young and they have a partner death, they've had that kind of early loss where all of a sudden you kind of you're isolated, you're different to everybody else. So, you know, a lot of people will have their parents die. And that's awful for them, in a lot of cases, but it's different to out of order loss. And it's like you experiencing concern about your, you know, potentially dying, which would be awful, really young. So it's a kind of a similar thing, but just more on a kind of existential level for you.

Kristen Hovet  
Yeah, I have that definite, like experience of trying to explain myself and no one really getting it. And the only ones who really get it are people who've lived through like a similar, you know, medical trauma, basically in midlife. So I definitely identify.

Cat  
Did you do like a group or anything? 

Kristen Hovet  
Yeah, that's an interesting question, actually. Because I, the only group I was involved with was a research project or study that was going on, that I enrolled in, that my doctors asked me if I was interested in. So it was like an online support group. And that actually was helpful. And it also showed me how I was experiencing things differently to other people. And perseverating on uncertain symptoms I was having and the existential part of like, I could die, and how, because of my, I guess, autistic brain and the propensity of, like, analyzing everything I was so just kind of churn these over and over. But also, I mean, I did have the option of support groups at BC Cancer, where I went for treatment. But I remember wanting to just physically leave as soon as I could, and other people would just stay around and go to counseling after and I was just like, I can't, you know, like, even during follow up, like, I would have to go back every three months for a checkup. And it was physical, and it hurt. It was a very invasive, physical checkup, and then they would have this iPad that they would give me and, like, it would be all these questions on psychological questions, like, you know, are you experiencing this, they're checking, obviously, for PTSD, anxiety, depression, and I would lie, because I knew if, I knew if I tell the truth on this thing, they will keep me later. And I just want to get out because I'm physically, like, ill. I'm feeling nauseous because this is where I had my radiation, my surgery, my chemo, you know, like, I just want to leave. So I don't know how they could've changed that to, you know, accommodate an autistic brain. 

Cat  
Yeah, have it off campus! 

Kristen Hovet  
Yeah. Or something! Like maybe have questions that kind of trick me. 

Cat  
Yeah, yeah!

Kristen Hovet  
Because, yeah, I played that one. So that was my experience with that. In terms of telling people, you know, like family members about being autistic, or friends, like, have you at all?

Cat  
Only my partner and a couple of friends, I wouldn't tell my family. I feel like it could be used as a weapon against me. There's a bit of scapegoating and all sorts of unusual behavior that I wouldn't find that helpful. I left and moved kind of interstate when I was 22. So I really haven't been, you know, I see them. But I haven't really had a support kind of network from my family, really, in that way that other people have around them. So, no, I wouldn't tell them. They're just not interested in psychology. So lack of interest, or lack of insight into their own kind of issues as well. So it's not really something I'd discuss. But the friends that I've told have kind of gone, ah, yeah, I guess so, ah maybe, you know. Or, you're too normal! Or, oh, yeah. Because they don't really know, they haven't really read the articles or the books or anything that kind of, like, makes sense to me. I don't know, I haven't really talked to many people about it. I don't really see a huge benefit now because they already know me for all of these years, it doesn't really change who I am. It just means I understand, okay, oh, this is why I was really awful. And one of my friends I was really awful to after my baby died. And she was so incredibly empathetic and kind and lovely, even though I was angry with her. She was great. And so she's kind of been through all of that and been really generous. And so it doesn't really make any difference, but she kind of gets it, but she was already an accommodating, nice person because she'd just go, oh, she's just being, you know, awful because of this event. I think they already know that I'm, you know, have different behaviors anyway.

Kristen Hovet  
And looking back at your, I don't want to talk about it if it's triggering at all, but just out of curiosity, can you see a lot of neurodivergent traits in your family? 

Cat  
Yeah, well, there's a lot of non kind of community, you know, kind of part of a community, but not really into it. So not participators, you know, so they kind of want family to be together, but then there's, I believe, there's a bit of kind of narcissism or those traits anyway. And also, kind of some weird, it's hard because my parents were kind of brought up in the war, so there's, you know, family who had been to war, and then they come back. And I think my grandmother was a bit strange, too. She used to try and scare my siblings when she was babysitting them and say, ah yeah, once the babysitter put the children in the microwave and killed them all. This is what she'd say when she was babysitting them. This is my father's mother. And then my dad was kind of, I think, at heart a nice person, but also was not present for me in any way. So I don't really think that I had a father who, you know, was there and also physically absent from when I was about nine. I went from a family of six people to just me and my mum living in a small town where we had no family support. And, you know, she was busy teaching, so I was very kind of isolated for a very long time there. And I thought that that was the thing that made me less inclined to be around people. But I think also some of the things that I was seeing at home were, you know, there was lots of arguments. There was alcohol. And there was not that kind of, I just wasn't read to, like, there weren't those warm things that, you know, a kid who maybe is neurodivergent needs to have some accommodations. And I kind of had the opposite of that. So I can see those behaviors. And they weren't necessarily, ah they loved me, but it was an unusual, you know, there were unusual ways of showing it.

Kristen Hovet  
I remember because a lot of autistic folks seem to have, ah, they come from families where there's lots of dysfunction, not all of them, but definitely, it seems like more so more than neurotypicals, I would say, and I'm not sure exactly why that is. There's probably, you know, history of undiagnosed autism, ADHD, various things. So that could be part of it, and different, you know, poor coping mechanisms that come up and lead to, you know, parenting issues and things like that. And I remember, for the longest time, I thought these things I'm identifying myself as different than everyone else could be just trauma, PTSD, but then I would meet all these other folks who had even more trauma than myself, I would say, and they didn't have sensory issues, they didn't have the same issues with being burnt out, or socializing, or things like that.

Cat  
Yeah, absolutely. You can kind of go, okay, there are people who had, you know, significant major trauma, like, you know, abuse, you know, physical or sexual, and I had kind of emotional abuse that was, you know, like, my father used to come and stand in my room when he was really drunk and just kind of menace me, and it was a really weird thing to do to, you know, an 11 year old kid. And I'd scream at him to get out, he never did anything. I was, you know, aggressive in my own way to try and get him out, which might be one of the reasons why I'm more inclined towards that kind of anger. You know, my mum wouldn't come in and say, you know, what are you doing, and this happened repeatedly, when he was drunk, you know, we had those things, but it wasn't like I was being beaten up. And I, you know, feel sorry for those people who have dealt with those type of traumas when they're a kid, but emotional abuse, and that weird family set up, it makes it really hard to make decisions later in life because you're being taught how to behave in your home setting. And I was taught that being an academic meant that you were superior. I was just taught some really strange ways of dealing with people. And also that conversation is a competition. So I wasn't taught to converse, you know, okay, you speak, I speak. Our family would speak over one another. And that was something I had to learn when I left home with some very patient friends.

Kristen Hovet  
I know you mentioned some traits that you had like sensitivity and being shy and things like that. But what are some other traits that you had as a child that you know now to be related to autism?

Cat  
I remember masking when I was really little. So I have three older siblings, and they're, you know, quite a bit older than me. And I remember, you know, when they're fooling around, I would laugh, even though I didn't really understand what was going on. I remember one of my brothers because they used to tease me a lot. They were nice in lots of ways and then they were teasing in lots of ways. One of my brothers would say to me, oh, that's a fake laugh. That's a fake laugh. And so then I'd laugh and I, I stopped knowing what my own laugh was when I was a five year old. And I'd laugh and he'd, and then he'd just say it was a fake laugh anyway. And that really kind of messed with me. So I remember kind of being aware that I was having these kind of little dilemmas and going, what, who am I? What? How do I laugh? How do I do things? Really early, and having to kind of fake it in a school setting when I then was around lots of little girls who played in a different way because I was at home, you know, arranging stones in lines and lollies in lines or in colors, or and my dolls would be arranged in order. But I wouldn't do those imaginative play games that little girls did. And when I'd get to the, you know, their houses and go, What are you doing? I wouldn't really kind of understand it. But I had a really, you know, strong imagination and did imagine things in my own mind. They were just different things. So I was, you know, very much into the Beatles and very much into watching, you know, British comedy and, yeah, there was just lots of things that I was really intensely into. I had food, you know, things where I'd just eat the same thing for five years or, you know.

Kristen Hovet  
I guess that could be considered a sensory thing because of the reason behind it. 

Cat  
Yeah. Oh, I did have a sensory thing with my feet. You know, when you're a kid and you jump off, you know, you're sitting on something or you're sitting up high and you jump down onto the ground? That used to be excruciatingly painful for me. Did you ever remember that?

Kristen Hovet  
I had something where I can't, I still can't put, like, my bare feet flat on the ground. Like it doesn't, I don't like that feeling. So I kind of...

Cat  
Wow!

Kristen Hovet  
...walk on the edges of my feet if I have no socks or shoes on. 

Cat  
Really?! 

Kristen Hovet  
Yeah. It's very odd to see.

Cat  
Love it. What do you do at the beach?

Kristen Hovet  
Well, I wear flip flops. I can actually, like, walk like that, but I don't like it. So like, I'll, if I'm not conscious, I'll start doing that. I'm like, oh, crap, I'm doing it in public because it's...

Cat  
That's awesome.  

Kristen Hovet  
..around the house, I'm just, eee, yeah. 

Cat  
I did used to hate walking. Like, I just felt like my feet were too, too bony or something, like, and I felt them really, you know, I have quite skinny feet anyway, they didn't feel good. And loud noises. I don't like loud electrical noises. But one of my brothers, there's this symphony called the Surprise Symphony, which has this big bang in it. And one of my brothers used to set it up on our stereo, on full volume, so that when I came into the lounge room, he'd turn it on. And so it'd be this kind of, BOOM, and, like, for years, I would open the door and push it with my foot with my hand over my ears.

Kristen Hovet  
With all of those sensitivities and differences, I guess, what was school like for you? 

Cat  
School was okay. I was kind of a good girl. I didn't really understand people getting in trouble. You know, I was just, like, when kids misbehaved, I just didn't really get it. I was just like, well, we don't have any power, like, why would you try and get in trouble? And it really upset me to get into trouble. But I was quite good, but a bit kind of self righteous and black and white. And so I'd be more inclined to kind of argue, and I had various specific things that I liked. And I liked having, you know, one friend, not necessarily a group of friends. There were periods where everybody left my home, like everyone went to uni, that year, I think I had pretty much a, you know, like some sort of meltdown and didn't go to school pretty much for the whole of year five, I didn't go in because I was just so, I just couldn't be around people. And I'd just fake illness. So I pretty well, like, missed a year. And then I started to feel a bit better and I met some really nice girls and then high school was okay, and I wasn't bullied. I think I was kind of too aggressive to get bullied. So I would, if some kid, you know, acted in that way, I was used to dealing with that in my home setting. I didn't have to deal with it in a school setting. And we had a pretty nice little school, in reality, it was fairly friendly.

Kristen Hovet  
I'm starting to think that, like, I've spoken to quite a few people now for the podcast, and then just, you know, just chatting with people in the community who are autistic. And there's quite a few late diagnosed females specifically who, they've felt different their whole lives, they're kind of struggling through school in some ways, but then they never got bullied because one of the things that we read about is, like, if you're autistic, you get bullied. That's like almost all the time, but I don't remember, I think there was one period where I was briefly [bullied] and then I moved to Canada. So it kind of saved me. But I don't know, it's just because I think, as females, being quiet and not saying much is kind of in line with femininity, in some ways.

Cat  
Oh, but I wasn't like that. I was like, really, really loud.

Kristen Hovet  
So that protected you in a different way, I guess.

Cat  
Yeah. And it was kind of like a mask. I was being taught at home that, you know, I was kind of being scapegoated at the same time as being told, you know, we're really smart. We know what's right. And without actually ever reading anything or knowing anything, just, like, yeah, I know what's right. You know, you have this kind of self righteousness when you think something, you have this kind of huge surge of adrenaline and so I was like a debater, but it was not healthy. Because it was like, well, I should be being taught how to have a conversation, how to interact with people in a healthy manner, where you don't need to be aggressive to actually, you know, that was my mask, I guess. I was being taught that that was the way to be with people. And I remember, like, having, in year four, the other time I remember kind of being aware of masking, my dad kind of used to look a bit like Donald Trump in his angry ways. Like, you know how he has that kind of that expression. And I used to do that in year four because I thought, ah, yeah, yeah, you know, I'll look like I know what I'm doing or there was just a kind of conscious decision and then later going, that's a pretty ugly look. Yeah, so I wasn't quiet. I was kind of the opposite, but not realizing that that's not really the way you are in society. So it's that societal view of the social model, rather than the medical model. At that point, I think, you know, you're kind of naive, you don't really know, oh, there's a reason why people listen to other people.

Kristen Hovet  
What types of supports do you wish you had growing up?

Cat  
I wish I had been read to, I wish someone had just sat down and been able to calm me down with things that were child friendly. I wasn't taken to, like, children's movies. After the age of eight, I was taken to adult stuff, everyone was older. And the 70s was a bit like that anyway, you know, we just kind of got given a whole bunch of adult information and programming and books. And I think it just would have been really nice to have a bit more time where I was just allowed to be a kid, and really kind of closeted to some degree, but I wasn't. There was just, like, stuff where our house was kind of open, and my dad didn't kind of make it so that it was child friendly. So it's like only warm in one room, and it was quite cold where I grew up. We didn't have screens on the window, and we had spiders all the time, and I'm terrified of spiders. If we just had screens on the door or screens on the windows, then we wouldn't have been bitten by mosquitoes. But my dad's kind of a bit, he doesn't get eaten, he actually doesn't get mosquito bites. So he didn't bother looking after us so that we didn't get them. Yeah, there's just lots of little kind of nice things that I think maybe I would have liked. But as a fourth child, it happens, you know, in lots of families that, you know, everyone's busy. Everyone's doing something, they don't have time for you.

Kristen Hovet  
And I know we've spoken about a lot of the sort of more negative side, I guess, or challenging side of being autistic. But what are your top three autistic traits that you love the most?

Cat  
I love how much enjoyment I got out of music, and have always got out of music. But as, like, a five year old, we bought the Beatles collection. And I used to just sit and listen to it over and over. And I was, it was amazing. Like, it was just incredible. I just loved music, it really set things off in my mind, and I could kind of escape into this imaginary world. I really enjoyed music.

Kristen Hovet  
Is that something you go to today still?

Cat  
I always have music on. 

Kristen Hovet  
Yeah, yeah. Same. 

Cat  
And you like lots of bands as well?

Kristen Hovet  
Oh it's so varied. Yeah. You know, I have Spotify on all the time. And, you know, at the end of the year, they give you that list of things, like, genres you've you've listened to, and your top songs and it's always like, wow, like, you listened to all the genres! 

Cat  
That's awesome. 

Kristen Hovet  
Yeah, but I love having music on. And then, you know, my headphones are always, like, the batteries are running out. So I always have to like, recharge, you know. 

Cat  
Yeah, yeah. 

Kristen Hovet  
But I find it very regulating.

Cat  
Oh, totally, yeah. I like that I've kind of been able to work out the things that do regulate me. And also, I really enjoy a fascination with kind of reading articles and reading science. And I really like that there's this kind of movement of autistic people to create their own understanding of autism, like yourself, like, you know, it's awesome what you're doing. I like that, that I'm kind of interested and when I get onto a topic I get really involved in or when I get into a book, like I read War and Peace the other year, and I was just, like, I'm living it when I'm reading it. I'm not just reading it. Yeah. Which is kind of, you know, sometimes my effusion is, you know, a little bit much for other people because, you know, I get really, really into it. But I like that, you know, it's a great feeling when you get that engagement. 

Kristen Hovet  
It's kind of like a blissful feeling. 

Cat  
It is. And I think that's where, you know, with kids who have autism, it's lovely if families can kind of find, okay, what's the thing that regulates? It might be different to other kids, but that's okay.

Kristen Hovet  
You sent me an email on poly- is it -vagal? I'd love for you to speak about that.

Cat  
I had this podcast with Dr. Drew and Stephen Porges podcast and it was years ago. This was kind of on my meanderings to try and find what I felt was the ultimate kind of issue with me. And so they talked about basically autonomic functioning because at this point, I got that, like, I had this feeling in my solar plexus that was really black, and that's where your, the vagal plexus is, or something. And so I'm, I am not a biologist. And this is my understanding of the way they explained it. But a lot of the time when they talk about, you know, fear based reactions, they say it's fight flight. And that's the sympathetic response. But it's kind of, the way Stephen Porges talks about it, it's like a hierarchy. And so you go through a few different steps before you hit that fight flight where your cortisol is pumping. And I was really noticing that I felt like I was just in that kind of initial phase all the time. Not necessarily, I had phases where I had the cortisol and I was just like, you know, insane with it, with the stress while I was doing IVF. And then later, it was just, like, I'd feel my heart just kind of flick a little bit too quickly if I met someone who made me feel uncomfortable, or if I was in a situation where I didn't feel safe. And so the way they talk about it, it's basically, you have your normal regulation where your parasympathetic is operating, and you're kind of in your flow state. But the first thing that happens in this theory is that the vagal brake flips, and that's the heart where you kind of go, umph, okay, wait a second, should I notice this? Should I be fearful? And that's a parasympathetic function, not sympathetic. So then you get to your sympathetic functioning, if you know, okay, yep, there is a bear, I'm going to have to run and then that kind of kicks in properly. But that lasts for a while, like, you don't just kind of suddenly run away from a bear and go, okay, I'm okay. Where if you hit the parasympathetic and you can kind of go, oh, no, it's okay. It was just a tree, I, you know, I didn't recognize it, then you can kind of calm down more quickly. And then if you are really scared, and you get really, really scared, so like lizards will just kind of drop dead. That's where your parasympathetic actually kills you, or you, I think you'll lose, like bowel function and all of those things on the way. So it's like there's some levels. But understanding those levels and understanding that autonomic regulation was really important to getting into a situation where you can digest your food easily, and do all the things that you need to do for healthy autonomic functioning and regulation is really important to try and calm yourself. So, for me that really helped hearing that because they talked about, you know, how they get people with PTSD and none of these things are working. But it's not necessarily just that fight flight response. It's not kind of a binary setting. It's something where there's kind of subtle things that happen along the way, where you can notice it and go, oh, okay, I'm not regulating. So what they found, phylogenetically, was the different paths of the vagus. There's like these two parts, there's the old path and there's the newer path. Yeah, it's worth reading about, it's worth listening to that podcast to understand it more fully. But it just meant that there's this kind of historic usefulness of certain fear levels. And now, we've evolved to have these other ones, but these old ones are still there, and they can have an impact on you. So understanding those levels of fear, for me, were actually really useful in trying to lower my blood pressure.

Kristen Hovet  
I think a lot of autistic people, especially late diagnosed or late identified, is that, you know, we don't really recognize that those sorts of physical or physiological responses, they're not normal, and they're not good for us. And we don't realize that other people don't necessarily have those things going on. So it's really, like you said, it's really good to be aware of it because we need to take clear steps to reduce that and make sure we're not in that state all the time.

Cat  
Absolutely. And I think the Fern Brady book that I mentioned to you that I read, which I love, she's on Taskmaster. She's hilarious, she's a comedian, but she's written a really, really good book. And she talks about alexithymia, where you don't recognize physical symptoms. And so I had panic attacks for 30 years. And I didn't really recognize them as a panic attack because I didn't feel like I was dying. And I didn't drop like Tony Soprano did, I wouldn't get to that, but I wouldn't be able to breathe properly, and I wouldn't be able to speak properly, and I wouldn't be able to swallow properly. So I'd have these things where I'd have this major physical sensations without being able to put the two together and I'd go to doctors, and they'd go, are you stressed? And I'd go, yeah. But we would never kind of go, oh, okay, well this might be a panic attack. When I realized that, it was just, like, oh, okay, that that was kind of where it was really helpful for me to find this diagnosis, or identification. It just kind of made it all make sense. And it made me realize that as soon as I started working full time, I had those symptoms. So as a 23 year old, and it took me 30 years to go, oh right, it's not me, it's not my fault. You know?

Kristen Hovet  
Right. What is a myth or stereotype about autism or autistic people that bothers you the most?

Cat  
I hate the vaccine one. Because that's had such terrible consequences. I also am annoyed, like, I'm kind of curious where the diagnosis of autism is going to kind of change in the future. Because it's, like, it's a very big area, for one word to be ascribed to it. And I feel to some extent that it's a slap in the face to the people who have, like, really severe symptoms, and, you know, high support needs and their family, like, that they have to experience and that their family has to, you know, support. It doesn't seem fair to be kind of almost saying, oh, yeah, I've got the same thing, even though I've been able to, you know, look after myself. It's just, like, I want there to be a diagnosis that everybody's happy with. And I want it to be, you know, genetically tested and biologically tested. I don't want it to just be I've got this thing. I can explain it. But I'd love for it to have, oh yeah, I did the blood test and I have this and so it's gonna lead to these physical symptoms in me. So the myth that it's kind of, it is this thing where it's actually fairly arbitrary. Have you read The Book of Woe? 

Kristen Hovet  
No, I haven't. 

Cat  
It's the book about the DSM. 

Kristen Hovet  
Oh, okay. 

Cat  
And the history of it. 

Kristen Hovet  
Oh, interesting. 

Cat  
Yeah, you should read that. You know, people who had the Asperger's diagnosis, even though that has negative links, why they were upset. It's just like, well, we're, you know, we're this thing. And now you've gone, oh, we're this other thing. But it's all fairly arbitrary. Do you have any issues with that?

Kristen Hovet  
The science part of me doesn't like that it's so, like, you know, based on a questionnaire or something like that, and it bothers me that I could go to a different practitioner, and be told no, that it takes specialized knowledge of, you know, female autism phenotype. And that bothers me a bit. At the same time, I know that there are people doing research to, you know, figure out the genes behind the different presentations, and that's probably going to take a while because there's so many different presentations of autism. It worries me only because I feel like people might use that to be, like, well, now we know this gene, we can probably cure it, or just give you some, you know, like CRISPR-Cas9, and we'll just kind of zap it out of you kind of thing. Or people testing, you know, they do the pregnancy screening, they do that for Down syndrome, and I can see it being used, you know, for autism as well. And so knowing, like, the strengths that autism brings to society as a whole, and, like, a lot of the people who have discovered really cool things, a lot of scientists, a lot of artists are autistic, it's like, well, you'd be kind of, you know, taking something very valuable out of the world if you were going to use it that way. So that worries me.

Cat  
Yeah, yeah. And I love, you know, when you were talking about the evolutionary aspect. You have to wonder, who was the first person who made friends with a wolf, you know, the person who didn't want to be with the group, the one who kind of loves animals because there does seem to be a very strong tendency towards friendships with animals, you know, in autism, like, it just seems to kind of go hand in hand.

Kristen Hovet  
When you were speaking about the evolutionary thing I remember reading, they compared, you know, the early cave paintings where, you know, they're very overlapped with the horses and the different animals, like, kind of very closely overlapped, almost like it's one line connecting all of them. And they've compared it to very young, autistic prodigies, savants. And how the artistry is very similar. So they, like, some people think, you know, with good reason, that the first painters, the artists, were autistic, or otherwise neurodivergent. So I can see that as well. 

Cat  
Wow. Yeah. 

Kristen Hovet  
Do you have a message for adults just starting out on their autism discovery journey? I know you don't like the word journey, so we can remove that, too. 

Cat  
Yeah. Just don't put it on the bit about IVF. And I just hate that word so much. I hate the word healing, too, they're buzzwords and they just kind of, you know, it's okay if you have a minor issue, but for major issues, you know, it's just, like, yeah, I'm probably just going to have to assimilate this. I won't ever heal from it, it wasn't a journey, I'm just going to assimilate, I'm going to get used to it. And other people will have to kind of accommodate it. Basically, I just say, look, do things that work for you, you know, if you mask, just start noticing when you do it. But, you know, you might feel that you have to continue doing it because of the type of work that you do. But just be aware, it's using up your emotions, and it's using up your energy. And then later on, you might have a meltdown. You have to kind of start to just be aware, okay, what are the things that are gonna set me off and maybe lead to some sort of a meltdown? And anything that's using up that energy, if you have to do a work where you have to deal with people, make sure you have a rest later on. Give yourself time and give yourself space to take and do the things that regulate you, which might be different to other people's. I love that woman that you spoke to who has all of the snakes and lizards at home and all the things that she loves. She's just such, so beautiful to listen to. And then I was just, like, oh my God, you have spiders. It freaked me out. But it's great, because she's found the things that really work for her. And she has this house where you know, she's got all these animals that she loves. But that's great. She's found the things that kind of work for her. And I think that's what anyone who's looking at this diagnosis, just go okay, well, society tells me that I must do this, but society isn't always correct. And you can just do the things you need to do. As long as it doesn't hurt anyone or any animals, then, you know, do what you need to do

Kristen Hovet  
Is there anything that I haven't asked you about that you'd like to discuss? Feel like we could just keep talking.

Cat  
I know, I know! This has been great. It's been so lovely chatting with you. 

Kristen Hovet  
Yeah, same. 

Cat  
Is there anything else that you wanted to say about your history? Because it's really amazing what you've dealt with.

Kristen Hovet  
I guess I could probably add things, like, I feel like, too, that more things will come up and some things I feel like I've kind of blocked and, you know, the podcast has been interesting because it's kind of drawn out parts of my own story that I wasn't feeling like I was ready to talk about. And then I did in the moment, and it was good. And so yeah, but one thing that you mentioned that you've been in this lovely relationship for 16 years. So one question that came up is, your partner, what sorts of things does he do that help you?

Cat  
He really likes doing things in our home environment. And, you know, he loves walking with our beagle. And he loves music. And we connected so much over music and programs and being able to talk about just lots of things that we're really connected on. And like really, really kind of esoteric things. And we love reading, and he likes to kind of find new stuff all the time. So it's very kind of stimulating, because he's always, you know, reading something new or listening to something new. My sympathies go out to everyone who had a terrible period during COVID. We loved lockdown. And we just kind of every time there was like a lockdown coming up, we were like, come on, come on, come on, we loved it. And we had one of the longest lockdowns in the world apart from the awful ones in China. Yeah, we really, we changed jobs, we just spent time at home. And that was never a problem, we didn't get bored with that, when there's so many things we can do in our home. We like to go out and be with people, a small kind of circle of friends, rather than a massive one. But he's just really generous in understanding, you know, where I have kind of had to go through this process. He's been really generous with kind of understanding me, and also telling me when I wasn't okay, you know, going through all that grief together, you'll eventually kind of be dealing with grief differently. And also, he had to deal with a different scenario than I do as a female. So and we know that, you know, I'm more likely to be asked regularly, or it's assumed that I have children alive. And so he's aware and kind of really empathetic about that. He understands that yeah, you know, mine is kind of more continuing because people don't really ask man as much. Yeah, he's just a wonderful person. He's really lovely. And yeah, I was really lucky, you know, to meet him, but we've had some really difficult things to have to go through. So if I was going to go through it with anyone, it would be him. Yeah, I had a fall. I didn't mention this, it's just, like, there were too many things. Just the year before I started doing IVF, just after I'd met my current partner, and we were in a shop and they had like a trapdoor open, and I fell down a whole floor.

Kristen Hovet  
Oh, no. Oh, wow.

Cat  
I know. But here's the weird thing, right? This is I'm kind of curious whether this is an autistic thing, because when I fell, because I always have this thing where I laugh when people injure themselves. But when it happened to me, I was hysterical. I couldn't stop laughing, even though I'd broken my... hurt my elbow. And, and I'd hit my head. Unfortunately, I'd landed on a ladder, and I just kind of whacked, you know, all these different levels of myself. And I never got any compensation or anything. It was awful. And so I chipped my hip. And so I've had to have hip surgery following that, but it was really weird, at the time, my first response was hysterical laughter because I was imagining myself going down this, um, like, just kind of, you know, like a cartoon character, kind of, because I actually almost like stepped across, was in, like, air for a second, and apparently, my partner just kind of heard me go, oh! And then I fell down a whole floor! I thought they were going to think I was insane, but we walked out, we should have called the ambulance and then we went to the hospital. But yeah, it was a weird response. It was very strange.

Kristen Hovet  
I can definitely relate. So it must be...

Cat  
Yeah?

Kristen Hovet  
Yeah, yeah. I feel like I laugh at times where I definitely should not be laughing. I think it scares other people a little bit, but...

Cat  
Yeah, I know! I've had to, like, really tamp it down because it really irritated my partner. Yeah. I was glad that at least I did it for me as well. It wasn't just other people injuring themselves. 

Kristen Hovet  
Yeah.

Kristen Hovet  
A huge thank you to Cat for being my guest on The Other Autism podcast. That's all I have for you today. Thank you so much for being here.

Kristen Hovet  
Until next time, bye.