In this conversation, Kate Murray shares her experiences as an autistic adult and highlights the complexities of navigating identity and advocacy. She argues that the traditional linear spectrum approach to autism is damaging and reinforces ableist beliefs, instead advocating for a neurodiversity perspective that values and embraces diversity. Kate also discusses the inadequate mental health provision for autistic students in schools, leading to higher rates of mental health issues among autistic young people. She invites autistic teenagers in Northern Ireland and the Republic to collaborate in a co-research project to educate schools, the public, and governments about what helps autistic students’ mental health.

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Link to information on research

Transcript of this episode

SUMMARY KEYWORDS

autistic people, autism, mental health, lived experience, neurodiversity and neurodivergence

SPEAKERS

Catherine Murray

Mags:

Welcome to Talking about all things inclusion! A Podcast where I get to meet and learn from people in the field of inclusion – in its broadest sense – that inspire me. I hope they’ll inspire you too!

Today I am talking with Catherine (Kate/Cait) Murray, a PhD student in TCD who has recently became aware of her autism, as an adult and is engaged in autism based research.  In the spirit of multiple means of communication, today’s podcast is taking a different approach. Instead of me asking Kate’s questions I am going to simply introduce Kate  and actively listen while she shares her story. We can learn so much from people’s personal experiences, which is why I am so delighted to be using to space for you talk about your own personal journey and your research in Autism. So whenever you’re ready Kate.

Catherine Murray 

Margaret, and thank you very much for having me on the podcast today. It’s lovely to have a wee space to talk about some things that are important for me, and hopefully it resonates with some of your listeners. So there are three topics that I’d like to discuss today, and they are, firstly, the process of recording this podcast, within that I’ll talk about masking as an autistic adult feeling a bit like fraud and the development of self awareness and feeling a bit more content within my new identity. Secondly, I’ll like to talk about what we now know about autism and what it actually means to be autistic. I’ll discuss, from my own perspective, what it’s like to live as an autistic person, and how being autistic makes my life experience different from those who are neurodivergent in another way, or those who are neurotypical. And lastly, I would like to discuss my forthcoming publications, including blog, which you might want to keep a wee eye out for. And I’ll finish up by discussing my own research, and I’m going to do something really cheeky and do a little bit of recruiting for that.

So by way of a quick introduction or explanation of who I am, my name is Catherine Murray. Though I prefer Kate/Cait, Catherine’s always been really formal. And growing up, I was only ever called my full name when I was in trouble. So I was a primary school teacher in Northern Ireland, England and Denmark, and I’ve recently entered the world of PhD life as a researcher at Trinity College Dublin, and it was actually through my research that I put the dots together and came to the realization that I’m autistic. So as you can probably imagine, the last year has been really quite the journey.

As hinted upon the podcast recording could have been a little bit more straightforward, but you don’t learn anything if things are too easy. So this is actually the second attempt, and we did record last year. You sent me the recording which I listened to, and in really good autistic fashion, I became anxious and really overthought. And that’s definitely one of my strengths, to overthink to the nth degree. So I simply asked you if you would mind if we recorded and you were really, really supportive and understanding of that. So thank you for letting me have another take, and hopefully this one’s a little bit better. So you may wonder why I pulled the plug the first time around. I’ve been reflecting on that, and I’ve a good idea why.

So very simply, I tend to shift myself and fit to overthink and logically decide that an opportunity isn’t for me. And to further explain by two examples, I refused to submit my work as a teenager, whilst undertaking my GCSE art, I feared that the examiner would conclude that my art, which was an extension of me, was a failure, but it wasn’t good enough, and so I prefer to feel based on not submitting than by someone else actually saying you’re not good enough or your work isn’t good enough. A more recent example is that while completing job applications, I would decide not to apply if I don’t meet every criteria based on the thought that someone else who does meet all the requirements would be the best candidate. So evidently, this autistic person has meager your self worth and lacks a bit of self confidence. But this time, it went a little bit deeper than that, and as mentioned, I recently learned about my autistic brain in 2022 which came with a real mix of emotions. Firstly, there was relief that I understood why life had been a bit more challenging than for other people. I had a sense of understanding myself, as well as a feeling of belonging, that I fitted in somewhere, and I was now part of this vast community or family of real weirdos like myself, and additionally, though it did come with grief and sadness, of the missed opportunities, of the life that I could have had, and of the pain that could have been avoided had my brain been recognized and actually supported so in truly autistic fashion, I’m asked, I completed the recording. I followed suit, following the footsteps of the likes of Pete Warbury, Ellie Middleton, Chris Spinello, and I took on opportunities where I could speak about my lived experience, and I thought that it might add to the conversation and help other people. So I observed that they were advocating, and I said all the right things to make me feel that I was an authentic autistic person that I waranted at a place in the Autistic community. Now, upon our retrospection, I wasn’t ready all to expose myself and put myself in that really vulnerable place with my new identity, certainly not to put it into the public arena. And so I recorded that podcast, and I really felt like a fraud. I questioned whether I understood enough about Autism, about myself and whether or not I could possibly help other people. So I really wasn’t confident in myself, and so that first recording was shelved. And I wanted to mention all this because as autism is becoming more understood and people are learning about themselves, there is an overwhelming urge to do what everyone else does to feel like you belong. It’s certainly something I’ve done throughout my life. I hope it’s not too much of a generalization to say that most autistic individuals may find themselves in a similar situation, masking jumping at the chance to finally belong and feel accepted. So if there’s anyone listening in who has recently thought that they might be autistic or maybe a loved one of someone who’s going through the early days of self identification or formal assessment. Please, just don’t rush your journey to try and fit in. You’re part of the neurodivergent community, regardless of whether you put yourself into the public arena or not, it’s not obligatory to advocate or to speak out about your experience, and what’s really more important is to learn about yourself, to experience the waves and emotions that you’re undoubtedly going through, and settle into the contentment of understanding your needs, to be able to live the life that you thought you’ve always wanted. 

So now I will talk a little bit about autism and neurodiversity. So I’ll briefly explain how the understanding of autism has evolved, and then I’ll explain what I regard it to be, and I’ll shed some light on what it means for me to live as an autistic adult. So over the years, autism has been shrouded in pathology. Prevailing standards of normativity molded society’s perceptions and distinguished artistic characteristics as abnormal. And in addition to that, people were further segregated based on what was regarded as having low intellect or normal or high intellect. And thus the term Asperger’s was coined to refer to an autistic person who was also highly intellectual. So an approach was taken to segregate those individuals deemed as being incapable of being educated. Later it would be recognized that regard as a so called low normal or high intellect. The differences in language, social interactions and stereotype behavior were apparent with many individuals, and some people remember those characteristics used to be called the triad of impairments. So the intended use of the term Asperger’s, which distinguish people based on having or not having functional speech and being a little bit socially aloof was for them to gain self understanding and support. However, the inclusion of the segregation within the DSM five, which is the assessment tool for autism, created the unintended division between autistic individuals with and without intellectual disabilities and speaking communication skills. The understanding of autism became this linear spectrum where individuals were classified as low or high functioning. We have, however, recently acknowledged the richly varied nature of autism and the co-occurrences which people may also have. And it’s really essential to recognize that these functioning labels, low or high exist as a as really essential as terms based on how productive someone is deemed based, you know, regarding their contribution to society. And this perception led to the mischaracterization of people who were considered as high functioning and as needing little support, while those who were deemed as low functioning, who were maybe non speaking, required higher support. And these labels really reinforced the ableist beliefs tarnishing those people as incompetent and really unreliable narrators of their own experiences. In 2000 this really rigid and damaging approach within the DSM five to separate autism and Asperger’s was recognized, and the term Asperger’s then collapsed back into autism. So since then, there has been a growing understanding that spoken language is not necessarily an indicator of support required, nor is it an indicator of intellect or capacity. Nevertheless, the linear spectrum still persists within society. And I’m sure lots of you have maybe been said, Oh, you’re high functioning autistic, or they’re low functioning, you know, and there’s this societal misunderstanding of what autism is currently, though, we are on the precipice of a shift in autism knowledge, which has come about through tremendous autistic and disability advocacy efforts that have fought for the recognition of autism  of autistic lived experiences to actually define what it is like to be autistic. And for example, and this is known as the neurodiversity movement, so the neurodiversity lens provides a value neutral understanding of neurodivergence, which means to be divergent or different from the assumed normal standards known as neurotypical. But there is contention between those who argue that the neurodiversity approach erases the experiences of those labeled as severely autistic. However, those who favor the neurodiversity approach, including many autistic researchers, including myself, highlight that there’s a real dehumanizing nature to declass, to classifying diversity as inherently flawed, wrong against the like assumed ideal. So I argue that diversity is an integral part of society. A great way to think about it is if you’re stuck on an island, maybe with 10 neurotypical people, 10 very similar ideas will be made about how to survive. However, if you have 10 neurodivergent minds, you have 10 different opinions and ideas, and surely you’ll agree, the odds have greatly improved regarding whether or not you’re going to thrive on said island. So hopefully that tells you a little bit about the history of autism. 

So what actually is autism? Well, from my perspective, as an autistic adult, it’s simply a difference in how you communicate with others, in how you interact with the world, relating to your senses. So you may seek out more sensory stimuli, or try your best to reduce the noises, textures, smells, lights, around around you and actually within you. So as well as that, autistic people have what’s known as a monographic attentional style, where you focus intently on one thing, and that means that stopping it or changing it to do something else can be really distressing, or at least it can be a bit tricky. So some of you may be familiar with individuals who find transitions really challenging, and typically it can trigger it can be a trigger point for maybe yourself or individuals to have a meltdown. 

So what’s it actually like to be an autistic female adult, well, without going into too much detail and without talking for Ireland, and also without being retrospective about my childhood and growing up too much in terms of my senses. Being autistic now means that I’m really, really sensitive to noise, and I prefer to live entirely in silence, in the peace and quiet. So you can imagine like going into a city or getting on public transport, or going out to a pub or a club, just really are very uncomfortable situations for me to be in when I’ve been in those situations in the past, I will most likely shut down. I won’t be able to talk. I’ll hide in the bathroom. I’ll cry. I’ll not be able to breathe because I’m just completely overwhelmed. The flip side, of course, of living in silence is that I wake up in peace. I can appreciate a good piece of music if I choose to listen to it. I hear the birds and it’s just tranquil in terms of my senses as well. I also dress impeccably, or so I think I love the material, of course, dungarees, and I dress entirely in one color. So more often than not, I’ll wear that same outfit for a good week or two before change into a different color. So therefore, if I’m, you know, required to go to somewhere where maybe dungarees or chords aren’t socially appropriate, I’m really thrown off.

The negative side of kind of living in silence is that I can’t enjoy things that others deem to be fun, so like music festivals or Christmas markets, I also sensory seek a lot through stimming, and when I mask or prevent myself from stimming, the need builds up and comes up in a really negative way, where I give myself friction burns, or I twiddle my hair and I have to rip it out because my fingers are stuck. And one of the other difficulties I face as an autistic person is understanding what my body is telling me, and this is known as interoception, I may be pronounced that wrong. So a good example is me not understanding that my body is thirsty. So I do a lot of hiking. I was actually in Nepal last year, and it’s recommended that when you’re up at high altitudes, exerting energy in the heat, drink between two and three liters per day. So over the two weeks that I was hiking, I barely drank three liters at all, simply because I didn’t feel thirsty. I was hiking roughly half marathons every day, so that can obviously have consequences, and that’s a really good example of me needing to have supportive people or apps, or maybe we alarms to prompt me to drink and actually look after myself. Regarding my communication. Stereotypically, I am a literal thinker, though I do appreciate a really good sarcy comment, but quite often I realized afterwards that something wasn’t meant literally. So I actually remember growing up I was studying history in school, the teacher had mentioned she would like us to create Roman temples. So a few weeks later, I realized I was the only one to bring in paper mache temple. I was clearly the really cool, cool kid in school. And I also, in terms of communication, I much prefer, like a proper conversation, getting to know someone, or maybe a topic in great detail, rather than, you know, pissy fitting about with small talk, I can script. I mask through scripting small talk, I can do that with no problem. But as soon as the script ends and there’s no kind of exciting topic conversation. I’m completely snookered, and I’ll make it make a beeline for the lose or food.  Outside of communication and senses. I really like structure and order. So another read, another reason that clubbing is really not my cup of tea. All that like uncoordinated and frantic dancing is just a terrifying prospect to be part of. But on the flip side, my home is spotless and organized. Everything has a place, and when I focus, I can get huge amount of work done. Every dot is dotted and all the T’s are crossed, so there’s no shortcuts taken. I also prefer to maintain one or two really close relationships, whether that’s platonic or romantic. And simply because I put so much effort and time into being a really good friend or romantic partner and I just can’t juggle anymore, I give everything to you, that person or persons. Additionally, I’m absolutely a stickler for justice, and I have very black and white thinking, which I’ve learned isn’t really a sought after truth. Generally, people like to break the rules and then justify them, but I and that’s one reason I really enjoy working from home, because I can have a cup of tea whenever I want, and I don’t feel like I’m breaking the rules. You know, having a cup of tea before lunchtime. 

Lastly, I would like to put myself out into the public space and tell you about my ongoing work to keep a wee eye out for as well as my research. So I’m actually currently working on writing blogs for the British Educational Research Association known as beera, which will also be available on my website, which I am working on, and the first blog is titled, The Accidental advantage of being autistic, which I hope to publish quite soon. I’ll also talk about mental health education and the dilemmas faced by autistic adults, such as employment and communicating to have your needs met, as well as masking and diverse and divergent language, the difficulties around maybe misunderstandings, most important, importantly, you’ll read or hear a message of hope within all of my work. Dr Vivian Rath, he’s a famous disability rights advocate, very well known in Ireland, mentioned that change happened very quickly during covid 19, when people believed it had to happen. And that fills me with a lot of hope that things actually can and will change for the better. We’ve already made so much progress from the days when if you were disabled, you weren’t eligible to attend school. Not too long ago, Dr Patricia McCarthy was the first blind student in Ireland to complete her GCSEs, and we all know that she’s a complete power horse who’s gone on to become one of, you know, a piece of furniture and a very established researcher in Trinity College Dublin, and she’s a incredible disabilities rights advocate as well. So though there’s a lot of work that needs to be done, we are making strides towards a more equal, diverse and inclusive society, not just for autistic people, but for everyone.

As mentioned at the start of the podcast, I am a PhD researcher at Trinity College Dublin. I’m exploring the mental health trajectories of autistic young people after they have left school, and this includes students who attended all types of schools. So you may be a parent or a family member or an autistic student leaving school in 2025 between the ages of 16 and 20, either in the Republic of Ireland or Northern Ireland. And I’m really, really interested in learning about what you feel as you approach the end of school, and what your mental health experience is for the year after you’ve left. So why is this important? Well, as my research has found so far during school. Depending on the postcode lottery, students are provided with really a pick and mix of mental health supports which aren’t necessarily appropriate for neurodivergent minds. Additionally, there’s a growing recognition of the mental health crisis affecting autistic young people of all ages, and in my view, schools have an excellent opportunity to harness that crucial time and ensure that autistic students actually understand their own mental health needs to be able to maintain their own positive wellbeing and mental health in adulthood. So more and more autistic adults who missed out on the current mental health provision within schools in terms of their teaching and supports are coming forward and detailing their experiences of loneliness, anxiety, depression, self harm, maybe eating disorders and living with suicide ideation. We know that suicide rates of autistic people are the highest globally compared to all other disabled and non disabled people, but this doesn’t have to be and as an autistic researcher, I would love to invite and use this opportunity of this podcast to invite autistic teenagers in Northern Ireland and the Republic to work with me to tell your story, to educate schools and the public and our governments about what could help autistic students mental health. And by doing so together, we can make changes that benefit artistic comrades, helping and helping them actually to live the lives that they want to live. So you will also gain the experience of being a co researcher. You’ll learn how to collect data, analyze and disseminate it in a meaningful way that reaches the hearts and minds of other people. So there are three opportunities to be involved in if you so wish. Um, you can be part of one, two or all three, if, if you would like to. So firstly, you could be a member of the advisory board. So that’s the very first step in any inclusive research. You could be part of the pilot study, which is a vital stage, which ensures that the materials are accessible and I’m asking the right questions. And thirdly, you could opt to be a co researcher for 15 months, telling your story through diary entries, art, poetry, photography, audio recordings, or whichever method you wish. I am really, really looking forward to handing the research reins to you, to autistic young people so you become co researchers with me at Trinity College Dublin, to tell your story. Because, believe it or not, it’s really, really worth telling. So if you know an autistic person who’s leaving school in 2025 or interested yourself, please do get in touch. I’d really, really love to tell you more about the research and work with you. Thank you very much. Margaret.