The Power and Struggles of Late Autism Diagnosis in Women: Insights from Karen Hayes

Ever been fascinated by the realm of autism, particularly in women diagnosed late in life? Strap in for an insightful journey, as we joined by Karen Hayes - a researcher with a freshly minted Master's in Autism Studies who has devoted her time to understanding these unique narratives. Karen unravels captivating stories of 14 participants, sharing their struggles, their reasons for seeking diagnosis, and how they navigated the world while hiding in plain sight.

Our conversation meanders through the labyrinth of experiences these women have faced. We explore the stigma and shame, and how it often becomes a hurdle. Interestingly, we also discuss the powerful effects of public figures coming out as autistic, and the inspiration it brings for others in the community. Using her research as a platform, Karen magnifies the voices of these women, sharing their experiences, their resilience, and their need for understanding communities and role models.

We also dive into the challenges these women face in accessing autism diagnosis, with Karen sharing heartrending narratives of women denied treatment post-diagnosis. We further delve into the factors influencing women who received a late autism diagnosis and their choices to disclose their condition. Wrapping up, we leave no stone unturned in addressing the trials of conducting research on autism, with Karen serving up some priceless advice for fellow researchers. Tune in for an episode filled with fascinating insights, compassionate understanding, and a journey into the world of late-diagnosed autistic women.

To find out more about our graduate courses visit: https://www.mic.ul.ie/faculty-of-education/programme/graduate-certificate-diploma-ma-autism-studies?index=0

Transcript

Catherine Hughes: 0:11

Welcome to the Middletown podcast. I'm Cath Hughes and I'm a research doctor at Middletown and I'm also Autistic. In this episode I talked to Karen Hayes, a researcher who just completed a master's in Autism Studies that was being run by Mary Immaculate College in collaboration with us at Middletown. Karen's topic is very close to my heart. She looked at the experiences of late diagnosed autistic women. She explored their feelings about diagnosis and disclosure and the support that they found helpful. I think it's so important that we understand the experiences of autistic adults across the country. I was delighted to chat to Karen. I should mention that there are a couple of brief references to suicide and self-harm in this episode, just in case that's something that you don't want to hear about today. Thank you so much for joining us on the podcast. I want to start by asking you to tell us a little bit about your area of research.

Kayren Hayes: 0:57

Well, essentially, my research is about Irish women who received a formal diagnosis of autism as an adult. I discovered it was an area where there seemed to be very little information and, in terms of trying to see where the real stories were, I said I'm going to look at people who had a formal diagnosis as opposed to those who were self identifying, so there could be no dispute about the authenticity of the research I'd received. Initially, I had hoped that I might get to speak to six women, but I found that it was very difficult to find people who were willing to participate. And this came back to my initial study, which is about the experiences of Irish women who have formal diagnosis of autism and adulthood, and it comes to the question of do they come out, do they hide in plain sight? And they were hiding in plain sight because I had only received one participant and that was true.

Kayren Hayes: 2:01

Somebody would put this lady in touch with me and thank you to you for your suggestion of putting up a call for research participants on a closed Facebook page for autistic people. That I got participants to engage in the process and then it snowballed from there and, as I say, initially I'd hoped to get six participants and I wound up getting 10 and then, having my 10 finished, one of them came back and said that she access to support centre had been chatting about it and the ladies in that centre, the older women there, would very much like to participate, but only in person. And I went to college, the ethics board reviewed it and allowed me go to that centre and I interviewed four of those women face to face. So I wound up with 14 participants in the end. So I got a broad, a broad breadth of research participants, age from 21 up to 60.

Catherine Hughes: 3:03

Amazing, and I think it says a lot about people who want to share their experiences. Once they know that they're safe to do it, I think that makes a really big difference.

Kayren Hayes: 3:13

Because when women thought it was somebody who was doing a study about autistic women, they were very slow to come forward. Once they realised it was an autistic woman that was researching autistic women, I got all my participants there and why do you think like diagnosis seems so common for autistic women?

Kayren Hayes: 3:33

Well, I suppose I'm 61 years of age myself and I would say right up to the time I was in my 40s and I was a primary teacher and I was working in a school where there was integrated education but the word autism was rarely mentioned.

Kayren Hayes: 3:47

So I think there's knowledge about autism which have been very sketchy up until relatively recent times, and adults being diagnosed as adults is a new departure, because most autistic adults were people who were diagnosed autistic as children and they grew up in there for their autistic adults. But in terms of adults seeking an autism diagnosis it seems to be a relatively new departure. And I found in my study, which would have aligned with all the studies we're able to do research, that all the parents that I which would have been half my participants that I interviewed sought a diagnosis subsequent to a child or family member being diagnosed autistic, and another four of the participants sought a diagnosis after a family member was diagnosed autistic, generally somebody much younger. So I think it was maybe even the filling out of the forums for their child that raised a lot of questions within, and then they started querying us and ruminating about us and that would have been what led them towards that journey.

Catherine Hughes: 5:08

I think a lot of people will relate to that. Definitely, I think it's a very common route to diagnosis and identification, isn't it? What was it that made you sort of specifically focus on the experiences of late diagnosed autistic women?

Kayren Hayes: 5:25

Well, I suppose if you're going to do any research, the better research will be done in a narrow topic.

Kayren Hayes: 5:32

And I would have done research before. I would have completed a Masters back in 2008 and I would have done bits of research along the way, and one of the things that would have put me astray in previous things was looking at something that was too broad. So I said, instead of looking at autistic adults or instead of looking at autistic women, I said let's put it down to Irish women who have got a formal diagnosis, and that is a very specific group and I had to limit it. It is only a Masters, it was a one-year Masters, so, like there was an enormous amount of research to be done in a relatively short period. So I wanted to have it very specific. But that didn't mean that the people that I interviewed were similar, because they came from all different walks of life and the age profile, as I say, varied. I had said over 21, from 21 to 60. Nobody had got their diagnosis more than five years ago and the majority had got their diagnosis in the previous two years.

Catherine Hughes: 6:36

Like obviously I'm somewhat biased, but I think it's such an important area for us to look at because there is such an amount of women getting a diagnosis in adulthood and we know that there's been a massive increase, but it's still a group that we don't know much about at all, and in Ireland we know next to nothing. So, yeah, I'm delighted that you've done this face to face.

Kayren Hayes: 6:59

Well, I think as well. One of the things that I noticed when I was reading up on this whole subject is about the female autism phenotype and how women mask their autism. And, to be honest, even though I thought it looked quite a bit about autism, I hadn't come across this whole concept of camouflaging until over a year ago and women camouflaging and masking their autism. That's why I call my study autism unmasked, because it was specifically to do with women and how they present. But even looking at the research there, like we would hear that there are four boys to every girl identified and there was, I suppose, a fairly broad belief that boys were more susceptible to autism than girls. But like two reasons like emerged for that, one would have been the testing that would have existed towards young boys would have been more suited towards what boys would have been studying in school and their particular interests. But the other thing would be it is when people established that they're not coping someplace that they are generally identified as needing further examination. And boys were more likely to kick off, be disruptive, if they couldn't cope with inside the classroom situation where girls would mask, they would be quiet, they would definitely try not to draw attention to themselves.

Kayren Hayes: 8:30

And then, of course, an awful lot of artistic people would be very academic and would cope very well. They would be getting a stain of seven or eight or nine, retaining the standardized assessments. Their homework would be done meticulously and methodically, so they would literally just go unnoticed for being on the spectrum throughout the school. And it would be subsequent to leaving school and, in particular, with the younger people I interviewed they would have been a couple of them would have remarked about the fact. They would be quite angry that they would have gone through second level school at a stage there were supports in place in schools and went unnoticed, and that their autism was generally misunderstood as mental health issues, un misunderstood as them being demanding, being lazy, being demotivated, that they should go exercise, that they should go out for a walk, that they should stop being so self-pitying and, like a number of people would have, in particular, younger people would have wound up on medication for mental health issues that they now would consider were totally false, that it was undiagnosed autism was the cause very powerful, isn't it?

Catherine Hughes: 9:54

It's something for us all to think about, I think, and what were you kind of hoping to uncover in your search when you were starting it?

Kayren Hayes: 10:03

Well, I suppose the first thing I wanted to see was were there Irish women who were diagnosed as adults? Were they really out there? Because until I went to Mary I for the first day of this master's you know, it was the first day of the study, which would have been in September 2022. That was the first time I met two women who spoke to us about being diagnosed as autistic as adults, and they were just such phenomenal, they were brilliant, they just made it all so. They normalized autism. For me. Really, it was the first time, I think I was in a room with two people, or even one person, who told me that they were autistic, that they were a woman, they were autistic and they had been diagnosed as an adult. And I suppose, from my own point of view, I had received a diagnosis of autism just around the time.

Kayren Hayes: 11:02

I was my 60th birthday early last year, which I didn't intend speaking about in this podcast, but I said I'd leave the podcast, take me where it takes me, and I wondered, like I said, I can't be the only one in Ireland. That would have been the first thought I had. And then, you know, there's this kind of like. Some people talk about the tragedy narrative, but I would speak about the glamour narrative, like you know, oh, do you know who has come out as being autistic? Oh, wow, this is just so amazing. And like, oh, do you know Anne Hagerty on the chase. You know she's autistic and you know this one is autistic and that one is autistic and she's nearly like a bad givana. Let's get some notice, let's become autistic. And that's really cheesed me off, because I was really as well struggling and wondering will I tell anyone about this? And I haven't told most people about this and this podcast is probably going to tell a lot of people that I hadn't intend to tell about my own autism because I wasn't that comfortable with sharing it.

Kayren Hayes: 11:56

But I suppose it comes to a stage and you realise I've lived the best life I can. I have done my best in life. I always worked, I went to college, I got a qualification, I worked all my life. I've been a mother, I've been a wife, I've been a sister, I've been a daughter, I've been a neighbour, I've been a friend. I've done my best. Why the hell should I be ashamed to admit that I am autistic, like you know? And okay, I've hidden and played side long enough.

Kayren Hayes: 12:27

And, you know, you just kind of get angry with yourself for having such an inferiority complex to feel. This is another place now where I'm less than but really and truly it isn't a badge of dishonour, but by the same token I get furious with the way people are trying to make it, you know, nearly a celebrity status symbol. Oh, you know who's autistic. You know the soccer player who's autistic. You know the television presenter who's autistic? You know, and we just kind of feel like autism sucks a lot of the time. It really does suck a lot of the time. And do I say that I'm thrilled to be autistic? No, I don't.

Kayren Hayes: 13:07

And I just wondered how other women felt about it. And I went out there and I said I'm going to investigate this and I was empowered and I was so enthusiastic and I was so privileged that women shared their stories with me. And most of the women that shared their stories with me I would say all except one had shared with very few people and one lady I was only the second person she ever spoke about it like that is a privilege and they begged me. Now I have researched things for different, not not at master's level, but, you know, done different investigations along the way and I know that I've been interviewed a lot of time when I was school principal by different people doing projects and they'd say would you like to hear the results? And you could likely say, oh yes, email and you have no interest whatsoever.

Kayren Hayes: 13:51

But this time there was a sea change. It was please do something with what we've told you. We want a better world out there for our daughters. We want a better world out there for other women that need to live with autism and need to live with dignity and support and respect with autism in the country. And please, please, do something with us and please let us know how you got on. And I have emailed most of them since and I said I will send you on the thesis once it's corrected and I hope to write a paper now for Midlothon as well.

Catherine Hughes: 14:23

Yeah, I think it's incredibly powerful to sort of feel recognized. So I think I do feel like there's some benefit to those sort of celebrities and that coming out and saying that they're autistic, because I think if I was an autistic child and I suddenly saw these people on TV that I recognize and sort of represented what I was going through, I'd feel really heartened by that.

Kayren Hayes: 14:47

But I agree that yeah, and I agree too that it's important that we do have role models, absolutely. But I suppose it's the response and this would have been right across the board with the people I interviewed is, when people disclose their autism, which is generally not an easy thing for them to do, they get the kind of response but oh should. Everyone's a little bit autistic, everyone's under spectrum nowadays and that is disrespectful. I don't think anybody says that. And the other one is you'd never know to look at you.

Kayren Hayes: 15:28

That's another one I've got like and I know not a lot of the women got that as well and and I don't know nearly like I know especially some of the younger participants would have told me that they felt that it was an attention seeking, another attention seeking and I don't know the right word for it now activity that they engaged in that especially where people would have dealt with the mental health services and would have been struggling and you know, I suppose dealing with autistic burnout and, despite being very clever and in school, not being able to go to school or, if they're in school, not being able to complete activities and not feeling able to complete maybe the conventional leaving sort of are getting to college and not being able to submit assignments in time and that it would be linked to, I suppose, being half-hearted about what they were doing, where it was anything but yeah, absolutely, and I think, as you say, the sort of feeling scene like you saying, like it was a married artie and Elaine McGoldrick, where the two speakers that you were talking about are fantastic.

Catherine Hughes: 16:45

But for myself, I remember the first autistic woman that I met after I got my diagnosis and I know her now still and it was so important to me to meet another autistic woman and to know that someone understood my perspective a bit even, and for me because I then she didn't live in Dublin and I lived in Dublin at the time and I set up a support group in Dublin to be able to meet and get to know and sort of hear these other perspectives that were similar to mine and then not like most of the other people that I knew who weren't autistic.

Kayren Hayes: 17:19

So I think it's so, so important and that's why I love the research that you've done, because it shares that perspective and it's so rare that we get to hear and I actually I thank you, Kat, and I actually met Elaine McGoldrick and Mary Doherty this September when I went down to Mary I and to talk about what I had done to the incoming students and I just said to them you don't realize, but the day I met you last year really was the first day of the rest of my life.

Kayren Hayes: 17:49

Wow, Because it was beginning of me letting go of the shame. I suppose that I felt I felt I was leaving people down by being autistic and like I come from a lovely neurodivergent family and my own son was diagnosed autistic at 16 and I said to him last night that I was doing this podcast. I said can I mention that? He says go for it. He said why not? I thought isn't this just so brilliant? This is one of my success stories that, even though he's a very shy, reserved person and then a few words, as he'd say himself he was totally comfortable enough for me to share that. That's gorgeous, it was beautiful.

Catherine Hughes: 18:30

Beautiful. That really is, that's gorgeous. So what did you find in your research?

Kayren Hayes: 18:37

I suppose the first thing I found is that, if I was to look at this from kind of just go through three different areas here the experiences Irish women encountered when trying to access the diagnostic services Well, the first thing is that information was virtually unattainable everywhere and they really really struggled trying to find a place where they could get an adult assessment, and many of them eventually got their assessment through an online service that provided adult autistic assessments. A few of them found clinical psychologists that worked with them, but it was a real challenge. And another huge challenge and it definitely is a limitation in my study is only people who could afford to get an access, an assessment, were included in my study because I had gone down the route. People were formally diagnosed. There is no public assessments available. Now, in theory, there's this tiny little cohort that may be considered was essentially, unless you're on suicide watch, you're not going to get a free assessment as an adult at this stage. So to be gary is, first of all, there was accessing finding somebody and the internet was the main source of information for people to find somebody. And the second thing was the cost, and I'm just going to include one finding, because one thing that a lady said to me really resonated with me, and one lady who was accessing the support service.

Kayren Hayes: 20:17

She was in her late twenties and she had struggled with her mental health for a long time and she said she had spent times as an inpatient and the next thing, during one of her visits with a psychiatrist, the psychiatrist suggested that she may be autistic to be worth finding out. And she said where? And she found she'd have to go and find out. You know personally, trust her job. They weren't going to leave her there. And when she accessed the support center she discovered she was eligible to apply for disability allowance and at that stage she wasn't well enough to work. She said when she got the disability allowance, which is a broad figure of about 200 euros a week, she said she got the big, huge chunk of money. She said she got over four weeks back money and she spoke to her dad and he said this is your opportunity. You can get a diagnosis. We can get it done for 800. And she said four weeks money for what was two hours of my time. But she did it and it was important to her and went back to her next appointment to the psychiatrist who said, oh, we can't deal with you anymore. We can't deal with you anymore. She said what do you mean? We don't deal with those type of brains. You'll have to come off our list and you'll have to go to the very end. But she said I'm not cured, I'm not better. Well, I'm sorry now for autistic, we can't deal with you.

Kayren Hayes: 21:44

And I thought that that was just one of the most harrowing stories and just another snapshot of how another lady who was well off financially who went down this route. She described it as being similar to IVF. It was a service women could access, providing the other funds, and both of those really resonated with me. But getting an assessment is not easy. So, also with the diagnostic services, there was one service that ladies used and they had a follow on counseling session, you know, maybe a couple of weeks later, but an awful lot of the women got their diagnosis and a few go. That was it. Yeah, no supports, no interventions.

Kayren Hayes: 22:37

And the next factor I was looking at was what factors influenced women who got a diagnosis of autism as an adult, and so whether or not they would share this information. And I suppose there's three different things that came to the fore there Women who were in employment, which was most women, were not happy to share it in the workplace because of the perceived stigma. I was trying to see did people feel it would affect their employment trajectory? I didn't get very far with that because the women I was speaking to hadn't disclosed it in the workplace. So you know, one woman had disclosed it in the workplace, alright, and had got a very positive reception, which she did say I was very well established in that job.

Kayren Hayes: 23:30

I was there a long time and a lot of people were just very reluctant to share it there. The next place the people might share it is with friends and family. And if you look at family, like the big worry of sharing it with a family is that you're letting them down, because generally if you're an older adult, you will be the elder lemon and it will be younger people. Are you letting them down by sharing this information? And people receive different, like there were very different receptions because some people were totally dismissed by family members when they shared it. Others were hugely supported and then sharing it with friends. I suppose sometimes they say it's the times of need you find out who your friends are and that would definitely have been a finding, but in general, that wasn't a huge sharing of this information.

Kayren Hayes: 24:29

And the final thing is what interventions could support Irish women as they come to terms with their diagnosis? Well, the first one that came up would have been counseling Post diagnosis counseling was huge. It wasn't there and those women who did have the resources to put it in place found it enormously beneficial. In fact, there were a couple of women that had counseling pre-diagnosis and one lady spoke about her life coach literally held her hand throughout the process and that was hugely beneficial. The next thing OT could be very, very useful and, like I would just say, like I know in my son's situation he was 16 when he got his diagnosis His OT has been pivotal positive influence in his life through the last seven years and OT is something that a number of people would have identified as being very supportive.

Kayren Hayes: 25:28

Speech therapy could be relevant to some people, but there were a lot of services that would have been very beneficial. But the area for women found more support was true support groups and that would be and this would align with the research. The online community has been a great support for most of the women that I spoke with and I suppose it's a safe space, people can access it, and things that people identified as being really helpful about the online community is, first of all, if you don't feel like it, you don't need to turn on your camera. If it is a face-to-face meeting, if it's on Facebook, you don't even have to have your photo showing. You can actually access the Facebook pages and say absolutely nothing, but just read for how other people's days are going and that can be supportive of you, and then people can put up a question and get other responses from other autistic people in the same situation, and it has really been a game changer for a lot of people.

Catherine Hughes: 26:35

Yeah, I've seen myself included, absolutely Like I've found probably more than anything I've found knowing other autistic people, either in real life, sort of face-to-face, or whether it's online, and I absolutely would have started it online meeting people, and I think it's just so important to meet people who have that similar experience and worldview and even ways of sensing the world, I think.

Kayren Hayes: 27:05

It's even the kind of issues like they've come up, that somebody might like their own space and sometimes, being autistic, you might need a full day of your own space and that's okay. Okay, well, you know, know your typical people could say what's up with you, you will come out. Why aren't you trying me for a cup of tea and this kind of thing? But sometimes you just need space, and really just space. It isn't that anybody has done anything adverse to you, that nobody has been anything less than wonderful to you, but you just kind of need to retreat and that's OK that.

Kayren Hayes: 27:43

This was one of the things that I just know something I saw online the other night with somebody that was going on a journey and two people wanted to share the lift with her and she'd rather go by herself. No, it wasn't how. They had their own means of transport and they thought she was unreasonable. And I can totally get the fact that sometimes, if you're going someplace, you want to go on your own steam. You want your own headspace going there. You may not want to make conversation in the car, you may not want to have music on in the car, or you may want to have music on in the car, and that's OK too, and that can enable somebody to go to arrive someplace in a good headspace, literally a good headspace. That's it yeah.

Catherine Hughes: 28:21

Yeah, and it's I find from from sharing experiences with other autistic people. They're almost like initially you're sort of you almost need permission to be yourself, and when you read these other people having those experiences, it sort of gives you that permission to kind of go OK, no, I can take this little bit of space for myself and I can treat myself in a way that makes me comfortable, and it sort of allows you to learn that it's OK and then learn the language of advocacy in terms of how you might share that with other people who don't necessarily understand your experience. So I think it's absolutely vital and I'd love to hear a follow up on those women's experiences.

Kayren Hayes: 29:02

So like everybody that I interviewed, everybody said please do something with this.

Catherine Hughes: 29:09

Yeah.

Kayren Hayes: 29:10

So, you know, the stories were shared conditionally, conditional to me using it to make the world of the people who were autistic and diagnosed as adults a little bit better and to make the world an easier place for somebody to come out. Because this whole thing, whether to come out or hide in plain sight like this, isn't something I would be hooting about. That I'm delighted about, because am I delighted and pleased that I am autistic? I don't know, the jury is out on that one. But I'm certainly incredibly relieved which would have been an overwhelming response from everybody is the relief. But then the subsequent emotion. They varied from absolute joy subsequent diagnosis, to a little bit of sadness, angry that life needed to be so hard.

Kayren Hayes: 30:00

And the oldest participant, who was the same age as myself, said do you know, girl? She said we've been trailblazers. Look how far we came, despite any supports, and that lady actually had been assessed by three different psychologists before she finally accepted the diagnosis. She was the only person who had gone and gone and gone. She wanted to be sure of it. And she said, like we've been trailblazers, and you know, I suppose that's what we're looking at it.

Catherine Hughes: 30:31

Definitely, and I know like for myself I probably would have had a similar trajectory to a lot of the women that East folks were. Initially I had that massive relief and suddenly I could look back and everything made sense and, like all of the struggles that I've had, so I understood where they came from. But so I was on sort of almost a high, but then there was just this massive dip because it's like, well, I'm still in the same place, you know, I'm still struggling, and then where do I go from here? So I think then that was where the sort of the work and the learning really started for me.

Catherine Hughes: 31:10

So I think it can be a really sort of a very positive thing to get your diagnosis and have that formal diagnosis. But then without the supports it can be really challenging because you don't know where to go or what to do and it can be a long process then to sort of self-acceptance and understanding what works for you that might not work for anyone else, so you have to. Really it's all sort of trial and error.

Kayren Hayes: 31:35

It is a very personal journey and, like one of the areas I looked at and was retrospective analysis of self and, as people look back, the sadness, the acceptance, the explanations, like that was a huge area and the study and one part I really need to address here is the what we'd say the lack of connection between the mental health services and autism specific services. Now the joint or optus committee and autism, like has suggest, which was published there in June of this year, has come up with a lot of very positive proposals and very well thought out proposals and this kind of a one stop shop is what they're recommending. But there has to be a connection. Like to have mental health services saying we don't, and like it wasn't just one person came up with this but we don't deal with those type of brains, and like there's a huge question of one was to examine it and maybe the medical profession might enter the appetite to examine this. But how many women were considered to be? Or there was puberty, there was postnatal depression, there was the menopause, there was all these reasons that were put on antidepressants and that were treated with medication by the professionals for so long, without ever even examining autism as a potential player in what they may be experiencing.

Kayren Hayes: 33:09

And I know that there was one of my participants was very angry that she felt that she had taken medication for a number of years and when she eventually came up with the thought perhaps I am autistic that she was totally dismissed by the medical professionals. And I think a lot of this comes from a lack of knowledge and understanding by the medical professionals. Not that they're bad people, because I haven't come across medical professionals that haven't been as professional as they can be and they're wonderful, wonderful people but they are totally at sea when it comes to the whole area of knowledge about autism. And Dr Mary Daherty is doing phenomenal work in getting this out there, yeah, and it's just so empowering to see what she is doing.

Kayren Hayes: 33:54

But, like even the joint eruptors committee, like would have come up with the amount of medical professionals that would have said that they had no training in autism, no knowledge of it, and you could have somebody coming in and you might say you know there's absolutely nothing wrong with you at all.

Kayren Hayes: 34:10

You just need to see somebody that might investigate this autism, maybe your reality, and if it is, and you have an understanding of that, maybe there are ways that you will find strategies that will cope with absolutely everything in a different way, rather than being, you know, zunked out with a lot of medication, which has been the reality of a lot of women and women, I believe, and it was another reason I studied women. Women are dismissed in an awful lot when they go with mental health issues. You know, and it is very easy to, you know, prescribe whatever the name of the medication is, and the length of time that you're going to get with your GP or your specialist is going to be minimal anyway, because of just because of the nature of the job, for maybe what people need is a couple of hours talking to somebody that say, you know, maybe there are other things going on.

Catherine Hughes: 35:07

Absolutely. Yeah, there's so much there that we still need to look at and to understand. And obviously I get very excited when someone like yourself has this sort of very empathetic, real world understanding of the research that you're doing and gets involved in research, because I think that's where real change comes from, because it's sort of a genuine understanding of people's lived experience. But I also know that it's really hard for myself. There are times when I will read a paper and I will close my laptop. There are times when I'll read a piece of research and I will just have to stop work for the day and I will have to go take myself for a walk, because I've read something that describes autistic experience, either in such a negative, awful way, or it's just someone's experience that's so painful to hear. So how did you kind of find that balance and how did you look after yourself over the process, because it can be really tricky.

Kayren Hayes: 36:11

Well, I won't lie to you. It was difficult and, in particular, say I completed 14 interviews in a space of four weeks. There were different delays about safeguarding and ethics and whatever, which meant that I didn't get permission to start my interviews in the March and I had them completed by the end of April. Now, after the first interview, which I did online, I didn't leave the house for a day and it was the most lovely interview and there was nothing that came from that interview that was frightening or whatever. It was a very positive interview, but I was speechless. I was literally speechless and, as you can hear, I'm a talker. The second interview yeah, it was tough. After that, I just seemed to have a resilience about doing the interviews. Then the transcription of the interviews. You see, yes, there was a transcription tool, but that doesn't stop it taking three to six hours to transcribe every interview. I had 80,000 words, found, the transcription of the 14 interviews, but that wasn't something I could delegate to anyone because I had made a commitment of confidentiality to every single person that spoke to me. Just like I said, the welch was Teams interviews, which is similar to Zoom. Just like I promised them that they would be deleted after two weeks. They were deleted after two weeks. I suppose this is the autistic brain. If you say two weeks you don't mean 15 days. Integrity would be key in all of this. Then I had all this information and then I used a package called InVivo to code and I knew as much about InVivo as a pig did about going on a holiday. When I started, my son, who's very IT savvy, trained me in InVivo and then I spent another week or a couple of weeks coding this. In the meantime, I'm supposed to be getting a literature review completed, which had been fairly. The literature review had to take a different angle once I had my interviews. In retrospect, I do the literature review after my interviews.

Kayren Hayes: 38:17

If I was to do it again, I had an enormous amount of work to get done in a relatively short space of time, but I would work and work, and work. And then, of course, the other thing is I. There was a lot to be said for the days like my last image. You went to the library and you got out books and you got out journals and you photocopied a few pages, and it was limited. But then you had the worldwide web, so there was 100 articles I wanted to read and then I was trying to narrow down which ones I should read.

Kayren Hayes: 38:47

When I was at these hammer and tongs now I was maybe 14, 16 hours a day, at least for some days, and the next thing I would say suddenly I can't do this tomorrow and I would spend a full day lazing about, fiddling around, looking at Netflix, et cetera. Now I did zero housework for maybe two and a half months. I did zero cooking for about two and a half months and I wasn't available to meet people during those two and a half months. But I am blessed that I have a very supportive family and my husband, my son, my daughter, my son-in-law they just supported me so much because they knew this was important to me and I would say that they supported me in many ways, and my daughter in particular would have been a great person to bounce the ideas around with, because she'd have a very, very good head to see the wood from the trees and say you're gonna have an attendant from back to the point.

Kayren Hayes: 39:43

But sometimes what I read especially when you'd be reading articles about the level of self-harm and suicide and all of these things and think that this could have been avoided with earlier diagnosis and proper intervention and you think that this whole generation of lost girls, lost Irish girls that may have bound up mortally harmed because of the absence of a diagnosis, and like that is heartbreaking. It is heartbreaking. We can't let this happen again. We can't let this happen again, whatever we have to do, and like, as I say, I'm in the awesome of my life but that doesn't mean I can stop doing something.

Catherine Hughes: 40:27

And that's why I think the research that you've done is so important and that's why I wanted to chat to you about it, to be able to share it in this way. But I think being able to publish it and share it in as many ways as possible is really important. So I'm looking forward to all the different ways that it will be shared so that lots of different people can hear it and read it and understand those experiences and how important it is to listen. Is there any advice that you'd give to other students who are starting out on their journey in autism research?

Kayren Hayes: 41:00

It's not easy. No, I suppose the advice would give people. First of all, if you're a neurotypical person that's going researching autistic people or autism in any respect, I think it's very important to be knowledgeable about how autism presents before you start speaking to people and it's very important to be respectful about autism. Respect is one word, but it means such a huge amount. If you're an autistic student, it is going to be different and I know that because all my life I would have thought I was somebody that left everything for the last minute because then I thought I'd do it in a minute and I couldn't.

Kayren Hayes: 41:44

No, just recognise your own limitations and your need. I could work so hard and so far. And some people say wouldn't you do eight hours a day? I could never in my life do eight hours a day for anything. Now, when I had a job that was structured, where I was working, that was fine, but I'd go at it full blast and keep at it and then I'd retreat from it. I would say to any autistic researcher to be kind to yourself and sometimes you're going to find things that will resonate with you and they will take you back and certain things might elicit memories that you've had. And again, just be kind to yourself and love the person you are and accept the person you are. That would be my main advice and the other thing to say it's a really exciting area to research and it's a very under-researched area, so it's actually research where you could find out something new and it's lovely, as a researcher, not to be regurgitating the same old arguments and findings, to feel that you can make a real, real difference.

Catherine Hughes: 42:44

Thanks so much for listening to the podcast. If you want to know more about Middleton Out, you can find us on Twitter at Autism Centre, or on Facebook or Instagram at Middleton Centre for Autism.