The Middletown Centre for Autism Podcast
The Middletown Podcast features interviews with leading thinkers and practitioners across the autistic and autism community. Conversations are autism-affirming and neurodiversity-informed with a focus on the lived experience and knowledge of our community. Episodes highlight issues impacting autistic people and we share ideas for family members and school staff who are providing support.
The Middletown Centre for Autism Podcast
Navigating Cancer Treatment as an Autistic Woman
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In the latest episode we chat to poet, researcher and advocate, Kayren Hayes. Kayren has been diagnosed with stage 4 cancer. She was very keen to share her journey as an autistic person, navigating a very serious health condition and navigating the healthcare system.
Kayren is very honest about her experiences in cancer treatment, so if you feel like you can't hear about cancer and the challenges it poses, then it might be no harm to skip this episode for today.
Kayren shares two stunning poems in the episode and, as ever, she is insightful and compassionate.
Welcome And Content Warning
SPEAKER_00Welcome to the Middletown Podcast. I'm Kat Hughes, I'm a researcher at Middletown, and I'm also autistic. In this episode, I chatted the wonderful advocate, researcher, poet, and all-round lovely human Karen Hayes. Karen has previously been on the podcast to talk about her research on late diagnosed women and disclosure. In this episode, we're chatting for a different reason. Karen's been diagnosed with stage four cancer. She was very keen to share her journey as an autistic person navigating a very serious health condition and navigating the healthcare system. True to form, Karen is very honest about her experiences. So if you feel like you can't hear about cancer and the challenges it poses, then it might be no harm to skip this episode for today. Karen shares wonderful insight for anyone navigating cancer care, especially women and healthcare providers. I'm also really honoured to be able to share a couple of amazing poems that Karen has written. As I say, I always love talking to Karen and I felt so lucky that she was willing to share these very personal but very important experiences. I hope you enjoy our chat.
Karen’s Diagnosis And Why Share
SPEAKER_00Karen, it's really lovely to chat to you. It's always a joy to be able to chat to you. And I know you wanted to record the podcast for a very specific reason. So I suppose we'll we start by you telling us a little bit about your health condition at the minute.
SPEAKER_01Okay, it's lovely to see you again, Ket, albeit on Zoom. But anyhow, I suppose I approached you about this podcast because I'd previously done a podcast with you about late-diagnosed autistic women, of which I'm one. And I just felt there was a bit of information about that out there, not enough. But what I wanted to speak to you about today, I could find no information about, so I said I want to talk to you about it. Um this month last year, I was diagnosed with cancer. Now, what I was diagnosed with is what is called splenic marginal zone lymphoma non-Hodgkins with bone marrow involvement, which essentially means that it's a cancer of the blood. It started in the spleen, which became hugely enlarged, and it went to the bone marrow, and I had 60% lymphoma discovered in my bone marrow via a bone marrow biopsy. So at the stage I was diagnosed, although I didn't realize it, it was incurable. Then you come across all these words like can something be done for it? And yes, something can be done for it. And I would have always thought, kind of going a bit off the point now, but I would have always thought if somebody gave me a serious diagnosis, that my first question would be, How long have I got? But do you know when I heard it? The one question I didn't ask was, How long have I got? Because I suppose number one, people really don't know. They have good ideas, but they don't know. And I would be a woman of faith myself, and I've decided that the only one that can actually know that is the good men above. And I suppose being autistic, I had enough challenges to get me to a doctor to speak to different consultants to get, and this went largely undiagnosed for over nine months, um to try and go and advocate for myself. And with all the things that are so frustrating going through the health system, that to actually get to the stage where I got a diagnosis was extremely difficult, and in ways more difficult than actually hearing the diagnosis itself, which other people might find strange, but I give you an example. If I got an appointment for a consultant, which I did that didn't diagnose my lymphoma, it wasn't their job to, which was just something being checked out along the way, my first thought is I hope that they'll like me. I hope that they will believe me. Can I really explain to this person just the way I'm feeling? And because I have zero scientific knowledge, and I actually think there's a part of my brain that doesn't let any scientific knowledge in, I would be a creative musical person, and no, science isn't my thing. So even if I heard that today, it is gone tomorrow. So just going to the consultant. I'm the whole way up to the city in the car, going through, and probably the night before going through, what they may look like, what the office may look like, how long I may have to wait, how no matter what happens, I'm going to be the most agreeable person they've ever, ever met because I don't want to draw any more attention to my awkwardness than is already there. So it isn't easy for autistic people to access the healthcare service. That's about it. Even with the ideal health service, which we don't have in Ireland, far from it. Understaffed, hugely understaffed, under resourced. Huge amount of expertise leaving the shores every year following qualification, because this the how would we say the conditions for employment in this country are less than appealing. Um so it is difficult, as I say, in the best of times to make head or tail out the health service here, but just accessing it is so so difficult. So as for my condition at the moment, now I'm a year down the line. I've gone for two rounds of targeted therapy, or I suppose it's a form of immunotherapy. And I go for that weekly for four weeks, and then the body needs five months to rest. So I had the first lot August, September last year, the next lot February, March this year. And the good news is that I can go ahead with it August, September this year. Although it isn't exactly a spa day.
SPEAKER_00Well, thank you so much for for even thinking of sharing all of this because I think it is, as you say, it is so important and so relevant to every autistic person trying to access the healthcare system and the the strength that it's taken, and and it just says so much about you as a person that your instinct is to share this with
Delays, Doubt, And Self Advocacy
SPEAKER_00other people.
SPEAKER_01Um you know, Kat, I would actually go and say there are an awful lot of autistic women out there who are afraid to go to the doctor. And when they go, say in my case, I was being diagnosed with UTIs for two years at least beforehand, and they were becoming more frequent. And those were valid diagnoses, but they were the red herring in the whole diagnosis overall. It was that my system couldn't fight infection, and that was my weak spot. But you'd get embarrassed going back again and again and again, and then you some genius that never did science for their juniors are telling you, oh, it's bad to go on too many antibiotics, they won't work when you really need them. And you know that you feel a bit of a hypochondriac and a bit of a fraud. And I suppose I just think being autistic, we are continually making excuses. I am anyway, for my perceived shortcomings, especially socially. So I would just say if there's any woman listening to this podcast anywhere, and you have a gut feeling that there's something not right, talk about it. Because in my case, I had been to two consultants and I had been diagnosed. I was initially diagnosed in September 2024 with this. Um I had been admitted to hospital with vicious pain. They were afraid it might be a heart attack or something. I knew it wasn't. I told him it was non-cardiac chest pain over the phone. They said, How can you know that? I knew it. I just knew it, even though I know nothing. I just knew it was a pain I'd had a few times before and I hadn't had a heart attack those times. But blood test showed out this thing called antifactor 7, stroke 7A antibodies masked by antiphospholipid antibody positivity. And that great multiple, what it essentially means is that a blood test, the normal blood tests, which are short-term blood tests, shows that my blood doesn't cut. Initially, they asked me if I had taken an overdose of blood thinners, which was a valid question for them because three blood tests came back the same that night. And I said, no, I haven't been on blood thinners, and they were saying, well, something isn't right, and they referred me further for that, but it was showing that I had the UTI, which was what I went home with the medication for. But I was very quickly taken up on this and called back, and I was asked, would I be part of a study? Because I was only the second person since April when that hospital had got involved in the study that had presented with this, and would it be part of a study? So being a researcher myself, of course I couldn't say no. And each blood test would take six weeks, maybe, you know, for them to whatever they do in the labs, it wasn't the short-term blood test. And after the first one, we'll just say this. I got that back maybe the beginning of November. Um, the scientist, I'll say the doctor who was more a scientist than a treating doctor, said, Look, we think we have an explanation, but we want to rerun it. And the next time that I went up was actually the day of my 25th wedding anniversary, which was the 14th of January, that's how I remember it. And that day I was told, well, we have found a reason why this is happening. The long-term blood tests are showing up why this is happening to you. But we're going to do more blood tests, which will be shorter. And an appointment was made to speak to me two weeks later, which would have been the 28th of January. And that day I was told I was being discharged from the study and said that they had found an explanation, but essentially what they would describe me as was a laboratory curiosity. Now, that phrase, a laboratory curiosity, has been going around in my head like the sound the hole in the bucket. By the time you've got away from it, you're back to it again. Um, because I wasn't a laboratory curiosity. And it was only after my diagnosis in June when I put all this into Dr. Google and my laptop, one of the things that could show up is lymphoma. Now, was it their job to diagnose me? No, it wasn't. But if they had said to me, well, I suppose they did say to me, we can't diagnose you. And I said, Well, where do I go? And they said, Why did you go to the hospital the first day? And I said, The reason, and they said, You need to see a consultant about that, which I did. I don't know, I bet there are people who relate with this, and this was my only negative experience with a consultant. She spoke over me. She spoke over me the whole time. And I started trying to explain something, and she said, I said, I don't think you're listening. And she shouted, in my opinion, now I don't know, is this my autistic way in hearing her? You're not listening to me. And after that, I said, no more. I shut down. I think it's called autistic shutdown, is it? Okay, student of the terminology better than me.
unknownYeah.
SPEAKER_01I said, no more. Went out, paid my 200 euros, left the practice, cried the whole way from the city back to where I live, and said, hell will freeze over before I'll go back to that consultant.
Shutdown After A Dismissive Appointment
SPEAKER_01And of course, it kept me away from the doctor as well. My the lovely GPs in the local practice that had done nothing at all to me. But I felt I felt embarrassed. And I suppose had another few UTIs after that. And it struck me one day, and I remember it was a beautiful sunny day, and I work as a school placement tutor with Mary Eye, a job I love beyond all knowledge, which I haven't been able to do in the last 12 months, and it's my greatest wish that I will get back to it again. But it means that you'd be off driving out to other schools to observe student teachers. And on two occasions on the way home, not from long distances now, maybe 40 kilometres away, I pulled in because I was tired, but I hadn't a pain nor an ache. But I thought, this is strange.
The GP Who Listens Properly
SPEAKER_01And I made an appointment with my own GP. And you know now I presume that a lot of people would have medical centers and you mightn't get to see what you'd call your own GP that often. And the day I went into him, I said, he said, what can I do for you today? More pleasant individual, never. And I'm going to tell you why he started such a feminist doctor in a minute now for autistic patients. But I said, nobody is listening to me. He said, I'm listening to you. So I started off and I mentioned a few things. He said, if you were to mention one thing, what would it be? I said, the pain behind my left side. He said, I don't see anything about a pain behind the left side in these reports back. But I said, that's where the pain is. And I kind of thought, I had kind of said twas, I hadn't actually said twas behind my side, I had said twas in my side and twas assumed it was in the front. So he examined me and he said, This looks far more like something to do with your spleen than a UTI. He said, I'll get a CAT scan. Now I didn't, can you believe this forgiveness? I didn't know a GP could order a CAT scan. I thought you'd have got a consultant because that used to be the way before. But he ordered the CAT scan, which I had a few days later. He rang me and said, Um, your bladder kidneys are fine, but your spleen is enormous. And he said, We need to do blood tests. And he made an appointment for me the next day to go up for the blood tests. And he said these could take two or three weeks. But a week and a half later he rang me and asked me, Had I had a massive blood loss. And I reminded him about this big long-winded name, I'm not going to say again. Um and he said, No, it would have nothing to do with that. And he said, Look, we'll start you on B12 injections on the Monday, and you'll have five of those in a fortnight. And I went up for the first on the Monday, and by the time I came home, he rang me and he said, Karen, he said, I have the full results back. Will you come up to me? I said, No. He said, Please, I said, no. I'm in the house by myself. I think I know what I'm going to hear. Now I thought Keta was leukemia, right? Which wasn't, it wasn't, right? But um, I said, I need to hear this in the comfort of my own house where I can process it. I didn't want to walk. First of all, park past ten people, two that would say hello to me because I'd know them. Go in, check in, go upstairs, listen to the noise of those bloody air conditioning units that drive me berserk. Um, see, feel awkward, wait to get in, feel awkward. No, I couldn't do it. So he said, look, he said, we need to get you into hospital. I said, well, you can do me one favor. I said. When I was coming down, I said, after getting the injection, I'd heard that there were 362 people on trolleys because of a summer flu. I said, wait till the morning. I said, I've been paying private health insurance for 43 years. Let me use it tomorrow. So that was really what happened. And I want to go back to tell you something about my GP. I disclosed to him about three years ago that I was autistic. He said, and he's a relatively new GP because my previous GP had retired. But he's in the practice a long, long time. And he goes, Would you mind me asking who diagnosed that? I said, Of course I don't mind. And I told him the clinical psychologist, and he said, treated me for whatever I was there. Gone out, he said. I'm not doubting you, he said, but would it be possible I could read your report? He said, I'd just like to see what's on it. And I said, Of course you can. But on one condition, I'll give it to you in hard copy and you shred it then. I don't want it in the system. He said, That's no problem. I know I was also diagnosed with um dysprexia. So I gave him the two reports. I wasn't up to him for a good while, and the next day I went in, he said, now number one, I read them. Number two, I shredded them. And thank you. You've given me a very good understanding that I didn't have previously. That's the kind of GP we need, isn't it?
SPEAKER_00It really is. That the curiosity and taking it, just taking the time to understand. The fact that it's almost like he let you take a breath. You know, you you were up to here and you went into him, and he was like, Okay, what's the the main thing? Let's start with that.
SPEAKER_01Yeah, and he oh yeah, because like I I think I'm the only one in the country that has uh an autism report um which uses the word very near the top that I'm long-winded. So you may need to be cuss cuss cussing the podcast, and that's perfectly fine, Kate.
SPEAKER_00No, but like that's all so incredibly relatable and it's awful, but I think, as I say, very relatable that you you encountered healthcare professionals who didn't take that time and didn't have that curiosity.
Overwhelm, Hospital Systems, And Control
SPEAKER_01Yeah, it's but I just found this when you're diagnosed with cancer, you get first of all, you get a peck. I hate that word that you get a peck. It's like this little envelope contains all the information about all the support organizations, all the different things you'll find, etc. But the word peck, when I was a school principal, I used when I'd enroll the children, I'd give the parents an enrollment pack. And I never realized how irritating the word peck could be, because there within could lie all the things you need to know, but things should be prioritized. You need to know this most and that less most, if you know what I mean, and you need to know the last thing least. So I got this pack and I was overwhelmed. Like I was in hospital for a week at the time I was diagnosed, and um within seconds, like I was, you know, in isolation, and then all my blood tests have come back with below lower panic limits. I think I just think something like penteoseme, oh no, some kind of anemia. I can't remember. I have a hopeless head for these, but white blood cells, red blood cells, the platelets, everything was below lower panic levels. So, you know, and I wouldn't mind cat. I felt okay that day. Just a strange thing. I felt fine. But um the one thing I needed was to be left alone in the hospital. So when I went in, I said to my husband, You have to go to work because they'll probably leave me home this evening and he works in the city. And I said, I'll ring you and he'd be there in 10 minutes. And he goes, Will I go in with you? I said, No, I need to process these things by myself, Kat. And I didn't, I wouldn't have been able to cope with somebody else being emotional about something I was entitled to be emotional about first. But it's like my diagnosis of autism. My overwhelming feeling when I got a diagnosis was relief. Now I'm finally being believed, and there's some treatment. Now I didn't know the extent of what it was, but you know, I I knew all along there was something. Yeah. I know I wasn't imagining it because every time you go to the GP, you're paying, every time I went to consultant, you're paying serious money. And you know, I would avail of other professionals within the health service, be it a psychologist, be it a physiotherapist, like I'd be running up 5,000 a year on my medical expenses because I looked after me, if you know what I mean. Now, most of those weren't to do with the GP or the consultants, should be the other um therapies, etc. But um that day I went in, I got the iron infusion first. And then they wanted to do the CAT scans again that had been done, say a couple of weeks before. Do you know the first thought came in my head? They're trying to make money off the VHI because I had that CAT scan done two weeks ago. But of course, CAT scan done, the next thing they did it with contrast, then they did an MRI, and they did it with contrast, and then a hematologist, oh, she was the loveliest person. Oh my goodness, everyone I met in the hospital was so lovely. But she came to me and you know, she asked me the questions again, and then I gave her, I said, hold on, I said I have two pages for you, and I gave her the one about this autoimmune disorder, and she goes, Oh, that puts a different um not the word perspective, that puts a different slant on things. She said, Thank you for sharing this with me. Can I take a photocopy? She said, I said, you needn't bother because I brought six photocopies with me because I was going to give it to everyone, because I didn't want hospital time wasted, and my own time wasted trying to figure out why my blood was coming up as being thin when it wasn't, if you know what I mean, or not clotting when it was. Um, but then I was admitted and I was in a room, say, for the first day, of course I was in isolation for the first day and a half. And then after the bone marrow biopsy, say um my husband you see used to come in every day before and after work, and I used to be saying, Don't, don't, don't. And then I told the rest of the family I'm not allowed visitors, which I wasn't really because I was in isolation. But when he came up on the the third time he came in, I had been moved, and of course the word oncology was there on the ball. And you know, it isn't easy, like my husband is also on the spectrum. It isn't easy for one autistic person to tell another autistic person that they have. a life limiting condition maybe really especially someone you love but um I suppose it'sn't easy to for anyone to tell anyone you could say that too but um he would be somebody that would express himself he can cry which is a great gift because when I need to cry most I can't cry at all and then if somebody jumps the queue in the supermarket I could start crying you know what I mean and um we still weren't a hundred percent sure of the outcome we just knew this was there my daughter who is not autistic she's actually my daughter's probably one of the most gifted people I know because not only is she right and smart in so many ways but she has incredible emotional intelligence and since she discovered and since I discovered that I'm autistic you know that we had to reframe our relationship in so many ways and things that happened 20 years ago you say ah now I know right but she was very strong of course she was over the phone I was talking to her I've two grandchildren that I adore that I mind be preschool and post-school and they're 11 and 7 and they're the light of our lives and they live near us and my son-in-law would be very measured as well then the big one how do I tell my son who's autistic and would be very self-contained and reserved as he described himself in many few words unlike his long-winded mother and he said oh my god whatever and I asked him about it there when I knew I'd be talking to what exactly were you thinking because she was over the phone he said I was just thinking this is just absolutely awful but I was in hospital say five days came home and I was going to the bone marrow biopsy was going to take a couple of weeks for the result of it to come so I was at home and I was going to be going for different injections and vaccinations whatever and I was as weak as water at the stage I came home and then I couldn't eat and then the weight was falling off me something I shouldn't complain about because since the last out of treatment I'm like the Mitchell and men sister. But anyhow um my son just had that ability to be the Cam in the storm he's always been very good with old people and with young children. And I remember one day when it was just the two of us in the house and I was in bed because I was feeling miserable and he came in and he says how are you? It was in the morning my husband got off to work and I started crying and he just sat down can I do anything I said no he said anything I said hold my hand so he held my hand and I cried for an hour. And then I said I'm finished crying now he said that's good. That was it like you know there's no huge drama about it that was it and I would say this was the year we all grew up at home because we all had to come to a new place a place of understanding and of course I didn't think I was going to live long because when I went along for the first going to fast forward to two months before I started treatment at the pre-assessment big mouth here who hadn't done I have this thing that I don't try to Google illnesses until it's you know until I have found out already right I said to the registrar I said do you know he said I'm just thinking I don't really want to go and have this treatment I said um why haven't I been offered palliative care?
Stage Four And The Word Palliative
SPEAKER_01And he looked at me and he said the oncologist isn't here he'll be here later I said what are you not telling me because I'd seen the oncologist they'd been referred from the hematologist when I got my I mean she got the results to an oncologist and he had explained everything and written it down and given us a page and we'd signed and my husband was with me. But um we had missed the little box which said that I was getting treatment for curative effects intent, right? That wasn't ticked and we'd missed that. He said um I said what stage cancer have I got and again there was humming and howing I said look for goodness sake will you tell me I found out it was stage four and it was palliative care. So of course for two days anyway I had myself killed off I nearly came home by the undertakers right and then I was trying to be humorous about it trying to think of these really funny epitaphs you know um and when I went up the first day and got the treatment in the chemo ward right this older doctor he seems to be there going around to people oh he's so lovely just such a gent I kind of he said to me now how are you getting on now because it was a bit awkward at the beginning I said you know I said I'm okay like I was about four hours into this I said but I never realized I was only getting palliative care and I did have such ah he said stop stop stop he said palliative has a new meaning now when my father was diagnosed with non Hodgkin's lymphoma from the day he was diagnosed he died was six weeks that's 29 years ago and the man was in the full of his health to all intents and purposes when he got that diagnosis. Now he was a bit older than me but he was still in the audience in his 70s but I said well when my dad I told him that and he said palliative has a new meaning now palliative means we can't cure it but we can treat what you're thinking of he said is before palliative was used as end of life care. So this is where I come back to is it me being autistic or is it me just being human? Why isn't there a little page where somebody's going for treatment and say if you find out that you have stage four cancer and that you're getting palliative treatment this does not mean that you were dying imminently yeah because we're treating you but we can't cure you.
SPEAKER_00Yeah I'm um because I'm sure that reaction and that understanding is so common because that's what I would have assumed as well. Yeah you know because it's it's historically how we've understood that word and and what it's meant for the people that we love absolutely and I suppose my friend you know I had a really good friend growing up and they left me you know the town I live in when I was 10 and then she came back when she was 15 and then when we grew up we kind of drifted but kind of kept in touch but she's back living in Ireland now with the last four since COVID.
SPEAKER_01And she started coming to visit me quite regularly and it was fabulous because we both had the exact same childhood memories. Very few people remember childhood with the clarity I do but she does but um she was just we were talking nonsense because we didn't want to talk about the elephant in the room and um she was telling me that she had there was some beautiful souvenir shops. She lives in a tourist area right and there's some lovely souvenir shops and she'd been into them and she was about to buy a few things she said and then she said no she said I have a relative and if they go in do you know the way we buy these things we don't want right and she said she calls things like that a fake right so I said that's brilliant I said I'm going to steal that now that's what I'm now going to call cancer lymphoma from now on I'm going to call it fake and I'm no longer going to call it stage four I'm going to call it chronic so I have largely referred to my condition as chronic fake since which sounds like a far more reasonable kind of a condition to be um lended with doesn't it and yeah if anyone wants to look at my LinkedIn page I have a couple of things written about chronic fake if I no I have a LinkedIn page just because I had a LinkedIn page not because I'm looking for employment or I'm offering employment but it is a good place to share poetry with other LinkedIn members that may be autistic or that may have cancer.
Sensory Survival In The Treatment Ward
SPEAKER_00And did you find from a a sensory perspective that sort of being in and out of wards and and oh my God.
SPEAKER_01Whatever it would be how is that oh my god like I think of like Dr Mary Doherty I must name the two greatest advocates for women who have been late diagnosed autistic Dr. Mary Doherty and Elaine McGoljack they're just incredible women and I've met both of them a number of times and they've been very good to me when I have contacted them during this journey and but Mary Doherty would describe about how as a doctor the extraneous noise gets to her. Where I'd be concerned the one accommodation I asked for because when I told my oncologist you know when I was going through all the things that were wrong I said by the way I'm autistic and he goes oh um what do we need to do for that I said probably nothing but I said can I talk to the oncology liaison team before I start treatment and he said absolutely so I did and if you see the hospital I mean now there could be say 14 seats that there could be 50 people getting treatment in any at any one time maybe I think but say there could be 14 places going down alongside a window and next to it then another 14 places. So I just asked could I sit alongside a window because if I was on the outside everyone up and down the corridor I would be thinking why are they going up why are they going down actually wrote a poem about that but just even when you're there like you know you pull I get in I'm always in very early and I've asked that too but um pull the curtain across I do not want to hear anyone else's story that may make make me sound a very hard person I'm not a hard person but they have to find somebody else to talk about their grief to about their cancer while I'm getting treatment. I'll talk to them any other time but not while I'm getting treatment they mean that but the first thing that gets you now I I wonder is this just being autistic or not you might hear two nurses laughing and you wonder what are they laughing at? And then you realize for flip's sake when I was teaching did I not laugh in the course of the day with my colleagues? Of course I did and my goodness you have to be very special to nursing an oncology board and I presume that the only way you can get through this is maybe have some little bit of levity in the course of the day. I would hear them having conversations with the person at next to me. And then of course you'd have the two things first of all sometimes I'd know the person next to me might be somebody young and I'd feel guilty that I would be taking up a space getting treatment when there was somebody young who needed it worse. One young mother I have no idea who they were but they were just saying they'd two preschool children they needed to get back to work they couldn't keep their mortgage going otherwise and I was feeling oh my God and here I am feeling sorry for myself how dare I another man one day and I was going out he said how are you he said you're the curtain drawn I love all people straight to the point I said ahead I said I'm not a very sociable person. He said I was Grant he said the missus was in with me for a while he said I'm 90 this week he said and they're treating me now why would they be treating the man of 90 and I just thought oh goodness now isn't he just such a wonderful perspective to get in a lovely lovely person. But inside the the hardest part for me isn't getting the treatment at all the hardest part for me is getting out of the car going up the lift going in and they put very special people working in these places checking in I don't know how that receptionist knows because it isn't chemo I get it's rituxab which is a kind of immunotherapy target therapy she goes you're the ritux lady how are you doing how are they all she knows everybody I don't know you you just find she can't be more reassuring and then you sit down and then you're called over and they get blood from you which goes down to the lab because it's a bespoke treatment you get everything. It always amuses me that they take my weight and height every week now my weight can change but my height should be fairly standard but they send all this information down and then you go in and while you're waiting to start that treatment you get in they put on the cannula and you're getting infusions of I think to antihistamine or something beforehand. But to the wreck it in the world there seems to be something going somewhere then the machine I have do you do how that's an awful way to describe it. If ever you were on a drip when the drip is over it goes beep beep beep right to tell you it's over right so the way you get it is you get the first lot slowly the next was a little bit more quickly and they increase the amount you get each time and there's a bell you can ring. Now I wouldn't ring the bell I'd say I'd die in the chair before I ring the bell that is the truth because it'd hate to be annoying them and I'd say probably annoying them anyway but like I'd hate to be annoying them on purpose. But one day I was inside this could be my third time in there and there was a different nursing and she said oh you're finished she said um do you know you should ring the bell when it beeps I said I didn't so that would explain why the previous weeks the nurse come like oh you're finished and you know like again why isn't there simple instruction if this goes beep beep beep the current dose is finished please ring the bell then one day it was day two actually I got a notion that I wanted a printout of my blood test results because I hadn't seen an oncologist that day.
Blood Results And Literal Interpretation
SPEAKER_01And there was humming and howing about getting it but I got it anyway and I asked the nurse how she said all is going well. Stop worrying now all is going well. So I came home anyway and you know if you have ever read blood results like one of them could say the normal range says between seven and nine and I could have seen it out 5.5 and I could see there was loads of things when I was below so I ran the oncology liaison nurse the next day and I just said I was very upset and I was and I said look I said there's no point keeping things from me. She said we're not and I said look the blood test yesterday I was told they were fine and they weren't fine. She said me pull them up here on the screen again they put very special people in this job because they're probably listening to people like me the whole time and I said look if I said the first one it should be between seven and nine and it's 5.5 and she said oh I see what has happened. These blood test results have to be interpreted in the context of a cancer patient receiving cancer treatment. And in that context you're doing really well. No why wasn't there a page in the front of the blood tests? Do not interpret these literally which is of course what a lot of autistic people do. These have to be interpreted in the context of a cancer patient getting cancer treatment. And it would also explain why they didn't want to give them to me the first day so I didn't ask for blood test results again. But it's just it's the obvious things that are the difficult thing.
SPEAKER_00Yeah and they're they're not they're not big things that it's always the case it's little tweaks. And it's a sentence here and a sentence there just to clarify things, isn't it?
SPEAKER_01And just being alongside the window when I can draw the curtain it means there's nobody alongside me. We're only in pairs it's like an airplane if you know what I mean. Right? If I was on the outside I think I would crack up just from watching people up and down the corridor but one day one person did say to me when I said you know just reminding you ever windows eat because I'm autistic and have a lot of anxiety around and she this particular person said to me everyone coming in here has a lot of anxiety about coming in here which was a fair comment but Kat I'm a very accommodating person. This was one thing it was the only way I could get through it. If I was in a bus and somebody came in I give them my seat I'm not a person who's mean and who's self-centered but I really felt my only way of getting through this is to be near the window and I kind of felt a real self-centered individual then. But that was one person who said one thing and you've also to remember like that on any given day there are people in that ward that are there for their last infusion. They may not be alive a week later they certainly may not be alive when they'd be due for the next one in a month's time a lot of these are younger people that have their whole lives ahead of them and it must be heartbreaking for staff to be dealing with that than having this woman of 64 coming in saying I need to sit downside a window you know and no I I I think it's it's far from an unreasonable request. You know and I think as I say it has it has been accommodated but like yeah as as I say you know it can be tricky you know it can be tricky.
SPEAKER_00And I do think and it's something because you know I I spend a chunk of my life at hospitals as well and I think we as an autistic person your instinct is almost to sort of make yourself spoiler and be because you're used to sort of getting things wrong and and not understanding what's happening and you know so you you try and be as accommodating as possible. So when you do have to and you do have to ask for something to make yourself comfortable because otherwise it's a nightmare if you don't but it feels like a huge request because your instinct is to make yourself tiny.
SPEAKER_01It is to make yourself invisible actually sometimes when I'd be sitting down because the noise was driving me mad the first day and I came home and my sisters I have two older sisters they're both a good bit older than me and very protective of me I said the noise was driving me mad. And my sister got on to my son the guy who knows everything about anything to do with IT and said you have earphones and like Orna go around and he wouldn't answer anyone because he's these earphones and he's ear than noise cancelling earphones. She said can you tell me how I can get him from Amazon or someplace I want to have him and a couple of days later she said you've these now for the next day which was great until I didn't hear the nurse coming in or the doctor coming in and nearly jumped out of my skin so amusing getting great value at home but I'd rather be listening to the noise and hear the footsteps than be prepared.
Support Gaps And Autism Stigma
SPEAKER_01Yeah um I suppose that's it and in terms of support groups for cancer patients I know there is a support group I try Texas it a couple of times and now this will tell you how bad I am um I had a lovely chat on the phone but I went to the place twice and I was out of office at the moment and called back in an hour and there wasn't somebody there in an hour. There could have been somebody there in an hour and a minute I went home then the next time I tried Texas them they weren't there so then I decided that's it. It's a stupid thing now I feel embarrassed even saying that but um I don't you know it I'm going to go for broken out say it I don't know that I'd fit in because I'm different and that's why there should be some kind of a support group for autistic women who are going through cancer treatment. Yeah my health I'd be delighted to found it and organize it. But it is different and I know that because I've worked as a facilitator but as I am with the over 50 women's group and it's like coming home when we chat because we've already made friends and we have WhatsApps and whatever but it's like coming home somebody said this might sound stupid but something and it doesn't sound stupid to any one of us which would sound stupid to somebody else and I really feel that there needs like even like Mary Dharty has done this incredible work about space for hospitals the healthcare settings I should say and I wondered why the hospital I was in wasn't utilizing it because there's a poster on every wall about something or other clean hands save lies you know if you have a cough wear a mask whatever you know why isn't space up there and it hasn't been implemented in Irish hospitals yet like you have the greatest genius on the planet when it comes to treating autistic patients and also trying to find a safe workplace for autistic doctors, autistic healthcare workers, nurses and it's not in operation. So I kind of thought look I'll buy the pack and bring it up but it isn't even printed. Now I'm in the process before my next treatment of getting in touch with the hospital I would gladly fund to have these printed and put in the relevant places and Mary would be happy to provide training for the hospital because I got in touch with her. But really and truly I think two things happen when people hear I'm autistic some of them speak very slowly to me because they think I'm stupid and I'm not and others then she doesn't look autistic is they I I wonder do they think I'm making it up like why would you make it up?
SPEAKER_00Yeah why would you make it up yeah yeah I've I've absolutely had that where suddenly the tone changes and the they stop speaking to you like a a a grown adult that you might understand what you're talking about or they it's like they kind of go but you're not a small boy you can't be autistic so yeah yeah and um and two things I've had experience where they've asked me to bring my husband or to bring somebody along with me you see and I felt they were talking to my husband more than me and he was embarrassed about it too.
unknownWow
SPEAKER_01I don't know, is it a perception of mine? But I told him the last time I was going, I said, Look, will you sit outside? He said, I will. And then when I was going in, he looked, I said, Do you want to come in? He goes, Yeah. And that day it didn't happen. We were both spoken to. But it also wasn't the day we were getting the news. And I do know the oncologist made a very good point. One of the reasons he asks a second person to come in is that two pairs of ears will hear more than one. Um, I was going to ask you, could I could I do something and put this out if you want, but I I'm I'm taken to writing bits of poetry. I've always been somebody said when did you start doing it all my life? But I just wanted I suppose to explain. I got my autism diagnosis at 60. I got my lymphoma diagnosis at 63. And if I was to compare how I experienced Botadell's diagnosis, it was very different. And which one was the more difficult? Would you like to hear a poem? Yes, please.
Poem One The Choice
SPEAKER_01I wrote this, it's called The Choice, and it's for autistic LinkedIn members living with cancer. If I could choose, knowing the eventual outcome, hindsight being 2020, would I make the choices I have made? Or would I have rambled down that alternative route, meandering aimlessly on the road signposted in a foreign tongue to unknown destinations? Or would I do it all over again? Disclose my autism nervously, with apology and shame, and weep at the stigma I was visiting on my loved ones. Lymphoma, which is a sort of a posh word for cancer, reminds me of Esperger syndrome, which sounds like a snobby word for autism. I have both both diagnosed in my 60s. The autism diagnosis paralyzed me with an innate fear, and I neither disclosed my decision to seek the assessment or share the outcome for quite a while. I felt shame, guilt, inadequacy simultaneously, with relief acceptance and an unburdening of six stressful decades of confusion, which suddenly made sense. The awkward silences. Some totally ignored my confession, whereas many minimalized it with comments such as, share it all a little bit autistic, or every second one wants to be on the spectrum nowadays. They don't. There were also lovely experiences of a tight hug and you're the same person I've always loved, and warm, fuzzy feelings of it being totally okay to be different. An old family friend reminded me of how I spent an hour a day standing on my head after school from about age six to eleven, and a long-forgotten memory emerged of loving the clean ceiling devoid of furniture and clutter that calmed my brain. But there was pity, sadness from me and others, that my new reality was the old life viewed through a different lens. Now lymphoma. When it was diagnosed, I was devastated. I tried all night and awoke still crying the next day, then decided I wasn't crying anymore about it, so I stopped. The response from people who learned of this diagnosis could not have been more different. Buckets of sympathy, cards, blessings, kind, lovely messages, flowers, chocolates, texts, visits, such loveliness. I was glad I lived to see how much I meant to so many. My black humour and scathing honesty about the potential outcome frightened a few, but you're the use to me by now. So the choice. My cancer would have become obvious. The treatment and isolation and never-ending appointments would mean I'd get found out eventually. Disclosure was a no-brainer. I could have hidden the other diagnosis, though. And I wonder if I should have shot my jib jab and just remained the adorable annoying oddball I've always been. Deal or no deal, I'll never know.
SPEAKER_00That's amazing. That's really, really powerful, Karen.
SPEAKER_01You would find it a lot easier to disclose a cancer diagnosis. And this sounds absolutely awful, but I found my cancer diagnosis a lot easier to process than my autism one.
unknownYeah.
SPEAKER_01It was a huge relief to find out that I genuinely was autistic because I wouldn't have gone for an assessment. That was my choice. Nobody said you should, you shouldn't, or anything. There was something I chose, and especially during those long times during COVID, I had plenty of time to ruminate in it, right? So that was all my own doing. So my goodness, even it was only after the first podcast I did with you that it became known to any extent. Because there was probably a dozen people new until then, and I went for broke that day. And I thought that night, would I text her tomorrow and ask her to withdraw it? And then I said no, it needed to be said, and the relief was overwhelming. But honestly, the shame and stigma attached to being autistic is huge. You never feel ashamed of having cancer, especially like my cancer wasn't caused by smoking or drinking or doing anything that you know those things we're not supposed to do to stay healthy, and it's one of those, it's less than one percent of cancers, are the one I have. So it is one of these random things that you get lobbed with. You know, people are very sympathetic, affirming, what would I say, reassuring, upset for you? So doesn't that sound mad?
SPEAKER_00It's a very strange one, isn't it? Because do you think is it the unknown that people don't have a frame of reference for autism?
SPEAKER_01That is exactly what it is. The ignorance about autism is absolutely it is frightening, and that's not just ignorance with the wider community, but you even have a situation, and it's one thing I'd be campaigning for, is this GKES, that's the Graduate Certificate in Autism Studies, which Middletown have written and Mary, I delivered that collaboration has been going on for 10 years. Anyone that ever walks into an autism class should have the benefit of having that qualification. It should be a core part of initial teacher training. And for those who didn't have it in initial teacher training, it should be given to them before they're asked to teach in an autism class, even if it meant taking a few months off teaching and being paid to become familiar with this. But like I there are, you know, not everyone that is autistic dresses in black, wears black glasses, wears a baseball cap backwards, or maybe has a t-shirt with something about dungeons and dragons in it. I'll just describe my son. Um not everyone who is autistic presents the same. And I know that one of the things that annoys me is people say when you know one autistic person, you know one autistic person. You could say that if you know one human being, you know one human being. I kind of have six or seven categories in my own head, but definitely a little bit of empathy, which of course the double empathy problem is the big issue, but if you could experience empathy from people when you're in a crisis, it would be just so helpful.
SPEAKER_00It makes all the difference, doesn't it? It does. It does. Um and I know you mentioned that you had another poem, if you were willing to. I would love to hear it.
Poem Two Apologies Withdrawn
SPEAKER_01I haven't made two seconds now because it says, yeah, this poem I read in Mary Eye. My son gave a talk at the 10th anniversary of the collaboration between Mary Eye and Middletown Centre for Autism in Mary Eye two weeks ago. And being a man of few words, that wasn't easy, but they wanted the authentic autistic voice. And when he was asked, he was more than I suppose he felt that he wouldn't be asked if they didn't think it'd something to offer, and he offered it, and I co-presented that day with him. It was just a unique opportunity, it was fabulous. I think we'll do it again. I really think we'll do it again. But um New Year's Eve dawn there last year. This isn't the poem though, this is just me ruminating, and I was thinking this was a New Year's Eve, it was the first New Year's Eve I'd ever given serious thought that I mightn't actually make. I was feeling quite well on New Year's Eve, like April quite well. Often felt a lot worse. And I was saying, if I was to do one thing different in my life, do you know what the way you were thinking back? I shouldn't have done this, I shouldn't have done that. Is there anything that I would like to say? And I just thought, I'd like to apologize to Orn. Now, Orn is the one person in the world that never wants an apology from me. But I'm going to read this poem, and it's really it's a resolution of an autistic mother, and I think autistic parents might identify with this. So it's called Apologies Withdrawn. As the new year approaches and the draws and clutter of the year just lived or existed within are analyzed, I make a big decision. For the last two and a half decades, I wish to withdraw the apologies I made, too numerous to mention. I no longer feel guilty for the difficult pregnancy I endured in the year 2000. All the times I apologize because I was sorry to be making a big deal about a process others undertook with furless supports, often on an annual basis. The sensory overload and overwhelming magnitude of my pregnancy, albeit over joy bringing new life, was incredibly difficult for me to process as an autistic woman. So if I apologized for appearing to exaggerate for this natural process, I want to withdraw that apology for being so hard on my 37-year-old self. Thank you. I forgive me. Those years my baby struggled to drink, eat, sleep, and I was delirious with anxiety and exhaustion, as was his lovely dad. I remember explaining fearfully, with a blanket of insecurity, drowned in inadequacy, for not being able to get him into a routine, introduce different foods, love him enough to enable him to sleep soundly each night. I did nothing wrong. To those who judged me negatively, any apologies or explanations condemning my inadequacies are fully withdrawn. Thank you for lifting that burden from me. You're welcome self. For the years he didn't speak and was a flight risk. I felt a less than competent parent. I withdraw any single explanation or apology I made. Wow, that's a huge relief. You're welcome self. For not being able to replicate the childhood his peers apparently enjoyed. All those times I urged him to be like all the other boys, give his best effort, try something different. Oh my son, I am so sorry, forgive me. When left to your own devices, you wrote wonderful tales of places unknown, unique characters, scenes of unimaginable wonder. You played your flute, your cornet, your piano, such incredible talent. I was so proud, and I regret my lack of appreciation. I'm sorry. Don't be daft. I was happy. Alone is a lovely place for many of us, having to explain it isn't, he tells me. He has forgiven me. To those who suggested that there might be something going on that merited further investigation, I detested but acknowledged you grudgingly. I am really sorry I wasn't able to embrace your guidance easier. Please forgive me. To the wonderful talented young man who communicates speaking many languages, including music, poetry, song, galga, English, expression, including the occasional dirty look mind. I'm sorry if you ever felt I apologized for your perceived shortcomings, just as you've had to navigate life with an autistic mother. Please forgive me. For what? You say. So are you, my son. All apologies withdrawn. Because we had nothing to be sorry for, and so much for eternal gratitude.
Closing Notes And Where To Find Us
SPEAKER_00Thanks so much for listening to the podcast. This is a conversation-based interview designed to stimulate thinking and hopefully support the development of practice. It's not intended to be medical or psychological advice. The views expressed in these chats may not always be the view of Middletown Center. If you'd like to know more about Middletown, you can find us on Facebook and Instagram at Middletown Center for Autism. Go easy until next time.