EP39: The Story Behind the Self-Advocacy Guide for Cancer Patients on the Autism Spectrum

If you're autistic and you're diagnosed with cancer, will your care be impacted by your unconscious wish to be the perfect patient? Or will it be impacted by an abusive spouse or partner, the kind so many of us on the spectrum find ourselves with? We explore these questions and much more.

In this episode, we honour the life and legacy of Lindsey Carla Holmes, a late-diagnosed autistic woman, who passed away from metastatic ovarian cancer earlier this year.

Joining me is Dr. Paula Holmes-Rodman — Lindsey's sister, caregiver, and collaborator — to discuss aspects of Lindsey's life and the sisters' co-development of the Self-Advocacy Guide for Cancer Patients on the Autism Spectrum.

We explore Lindsey's journey of self-discovery, her resilience and sunshiny disposition, advance care planning, and some of the issues that may leave many autistic folks vulnerable to abusive relationships.

Dr. Holmes-Rodman shares stories from The Lindsey Interview Project, the cat- and snack-filled Sunday afternoon chats that sparked the development of the Self-Advocacy Guide for Cancer Patients on the Autism Spectrum — a Guide uniquely positioned to help autistic cancer patients everywhere.

This episode celebrates Lindsey's hopes for the autistic community, the continued importance of self-advocacy, and the ways listeners can help support Lindsey's vision for a better future.

Watch this episode on YouTube.

Find the Self-Advocacy Guide for Cancer Patients on the Autism Spectrum on Autism Canada.

Watch The Lindsey Interview Project. 

Theme music: "Everything Feels New" by Evgeny Bardyuzha.

All episodes written and produced by Kristen Hovet.

Send in your questions or thoughts via audio or video recording for a chance to be featured on the show! Email your audio or video clips to otherautism@gmail.com through WeTransfer.

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

Transcript

Kristen Hovet
Hey everyone, welcome back to The Other Autism podcast. I have a bit of a cold today, but I wanted to make sure to get this out as I'll be away next month. Today I'm speaking with Dr. Paula Holmes-Rodman, an anthropologist, consultant, writer, and practitioner of narrative-based medicine, based in British Columbia, Canada. But before I share our conversation, I'd like to say a huge thank you to Pam and Sanna for each buying me three coffees through the Buy Me a Coffee link. Thank you both so, so much. If you would also like to buy me a coffee, please check out the link in the show notes that says, buy me a coffee. And with that, please say hello to my guest for today, Dr. Paula Holmes-Rodman. 

Paula Holmes-Rodman
I'm really excited to be here, honored. I know that you usually interview only people who identify as autistic, so I'm not. I know that we use the word neurotypical. I'm Paula, I'm Paula Holmes-Rodman. But the word neurotypical means that there's sort of an atypical. So let's just call me not autistic. I am an anthropologist, I'm an ethnographer, I'm a caregiver. I was a caregiver and I am a caregiver still. And I'm a practitioner of narrative medicine and I'm a writer as well. And I'm an advocate for people who experience barriers to really equitable cancer care. And that includes autistic people as well.

And I work in the oncology space for a lot of equity and advocacy work right now. So it's kind of a second career, although my first career was in New Mexico and Arizona, working with Indigenous women and looking at post-colonial Indigenous identities, medical narratives, and really complex and competing ideas of the miraculous. So this is a bit of a second career for me and working in the cancer world.

Kristen Hovet
Thank you. And for people who don't know, could you explain more about narrative based medicine? What does that entail? 

Paula Holmes-Rodman
Oh gosh, yeah, we need a whole hour for that. Narrative medicine is really just the understanding that we are storied creatures, all of us. So that whatever medical or end of life illness experience that we have, there is usually more, always more. There's more. There's the rest of the story, right?

So there's whatever the healthcare providers understand and is recorded in our medical charts, but then there's the fully human experience of it. So how do we communicate about our healthcare? How do we represent it? What does it mean to pay attention to a storied understanding of healthcare? And it has a lot to do with expressive writing, with paying attention to text as well, and understanding the illness experience also as a text. I'm doing it for the University of Toronto. And I'm interested primarily in cancer narratives and end of life narratives as well. 

Kristen Hovet
Awesome. Thank you. And could you explain how and when your connection with autism began? 

Paula Holmes-Rodman
Yeah, you know, it's interesting when I saw this question, it's like, well, I'm sure I've always known autistic people, but obviously, it began with my sister, Lindsey. Lindsey was four and a half years older than me, but we didn't grow up knowing she was autistic. Obviously, she always was autistic. She wasn't diagnosed until 49. So I didn't grow up going to school with, I think there was probably a special needs class and those kids were ghettoed, corralled as different. But the word of like, there's some autistic people among our midst and they might need some accommodations and their brains work differently and might have some sensory issues. That's not how I grew up. And really my understanding of autism started with my sister, with Lindsey, and she sought her own diagnosis. She received that at 49 and that was basically because she wanted it for herself. So it was really understanding Lindsey's understanding and her unique experience of autism that, which of course, as she used to say, you've met one autistic person, you've met one autistic person, right? As we all know. 

Understanding autism through her lens and through her experience encouraged me to say, well, what else does this look like? What else does this feel like? So that sort of was the beginning of it. But obviously we've all known people who are autistic all throughout our lives. And I'm sure I went to school with them and there's probably some even in my own family, but really, via Lindsey is the primary answer to that one. 

Kristen Hovet
And how did that change things for her, if at all? 

Paula Holmes-Rodman
The diagnosis? 

Kristen Hovet
Yeah, like her understanding of herself or any challenges she was having. 

Paula Holmes-Rodman
For Lindsey, sort of one of the things is that there was a siren call of normal. OK, so normal, she really wanted to be normal. And I think looking at the way that she was raised is that our mother was very young when she had her. She was 21 in Missouri in the sixties. And she knew something was different. Something was unusual about her daughter and kept taking her to doctors saying basically, fix my child. And the doctors were like, well, it's fine. It's fine. You know, it's probably, you are the problem. You are the mother as the problem. And she's perfectly nice. There's nothing wrong with your child. 

Of course, I wasn't privy to that as the younger child. I wasn't involved in the conversation. But I think that the things that my mom did to support my sister growing up were things to make her more normal. And my mother has since passed away and I wish I could talk to her about this more. But not out of cruelty, not out of, I don't like you, so I want to change you. But more that she saw the struggling and she saw the bullying and she saw, she didn't want that. You don't want that for your child. So, you know, can you act more normal so that people aren't mean to you? You are accepted. You have employment and love and all of the things that we want for our children. 

So I think that Lindsey always knew there was something different about her. And I don't know exactly what it was that started that searching for diagnosis process. But when she received it, she sought it out from a, I believe he was a psychologist who was also himself autistic. And for her, I think it was more of like a lovely homecoming. Like, ah, that makes sense. But it wasn't, what she didn't do was then turn around and seek community, turn around and look for other autistic people and say, okay, you are my people, right? And how can we form a community? 

So I think for her, it was sort of more like, okay I'm not crazy, I'm not broken. I am autistic. So I think there was more of a homecoming, a retrospective homecoming is the way that I would describe it. But she still wanted all of the same things that... she wanted to work and she wanted ultimately love and good health and all of the things that we all want. And she felt that, like all of us, that we deserve those things. And that her very strong work ethic and force of will could achieve those things for her. 

And she used to speak about her autism parts. She says, my autism parts, my autism is showing, my autism parts. And I never really thought about how funny that was because I wanted to say, honey, all of your parts are autism parts. They all are, right? But for her that, now upon reflection, tells me that there was a little bit of disjuncture, disjointing, I guess is the word, dissonance between those things that she perceived to be as her autism parts, as her autism being showing, which is an interesting way of saying that. And one of the things, the times I really remember her saying that was the last time she saw our mother, which was clearly the last time she was going to see her alive prior to her death. And she was really struggling. And she kept saying, my autism is showing. 

And I said, it's okay. You know, it's okay. Yeah, this is tough. Of course it's tough. This stuff sucks. There's no way around it. And you can struggle and blank out and melt down and shut down and do all of the things because this is, we're in it. Like we are in this emotional kind of space. But the bottom line is, is I think that she always felt, again, that siren call of normal and a little bit of disjuncture from some other part of her that was sort of deemed to be autistic. And she did struggle with that, I believe all of her life, although that was more integrated towards the end of her life. 

Kristen Hovet
It makes me think of that concept of masking. I know that's a relatively new one in the autistic community. So maybe she... I don't know how much she thought of that for herself, because it sounds like what she's saying is like, my mask is coming off here. 

Paula Holmes-Rodman
Yes. Yeah. The language of masking and unmasking was the language that we used in the last, about the last year of her life, I would say. So she died in April of this year, 2024. So the last year of her life, she would say, yeah, why should I mask? Why should I have to? And that actually came up with, she lost her job prior to, we're kind of skipping ahead a little bit, prior to recurrence, coming back. So for her, looking for employment and that masking/unmasking, disclosing/not disclosing discussion, I think was part of that identity work that was happening prior to her cancer recurrence. So that was part of her language, I think, towards the end as well. 

Kristen Hovet
I know Lindsey was diagnosed with cancer and that included an initial diagnosis of ovarian cancer. Is that okay to say? I think you've- 

Paula Holmes-Rodman
Oh absolutely, yeah, no problem. 

Kristen Hovet
And a recurrence in the form of brain cancer. So early on in this journey, you set out to record your conversations with Lindsey and that turned into the Lindsey Interview Project, which folks can watch on YouTube. You then found yourself using the content of those conversations to form what became the Self Advocacy Guide for Cancer Patients on the Autism Spectrum.

And I know I've been a cancer patient. I would have loved to have that at that time. I'd love to hear more about the process of creating that and where the guide is at now. 

Paula Holmes-Rodman
Well, we ended up creating the thing that we wish we had had. So I mean, I think that's the short version of it, too. Lindsey was diagnosed with ovarian cancer in 2019. And one thing that's interesting, just to back up a little bit, speaking of stories that go around in circles, is that she, that I think that's interesting to say that if you have people who are late diagnosed, self-diagnosed, self-realized with their autism, and then you have a cancer diagnosis that kind of comes to town within a couple of years. So you've got somebody who has cancer in often, the kind of people who are young that have cancer diagnoses, but often they tend to be sort of late, you know, later in life.

If you've got all these people wandering around in their 40s, 50s, 60s, and 70s, and they're like, hey, I just realized I'm autistic, and wait, now I have cancer. So these are people who have not grown up, they're not diagnosed at three or four, they haven't received support and accommodations, and they don't have that language of masking and unmasking, and these are my needs. They haven't grown up in that system. And then suddenly they're thrust into this incredibly fully foreign world of the cancer care system, which is foreign for anybody, even if you're not autistic. And so suddenly you're supposed to be, wait, I'm supposed to be able to articulate about my sensory needs and the way that I communicate and I process, but I just learned that language or I'm learning that language and I'm learning who I am and the way my brain works and wait, now I have this biomedical crisis of cancer. It's all happening at the same time.

So I think that was the sort of come to Jesus moment, as they call it, for me, that's like, wait a minute, this must be happening for more than one person in the world. How can I use my ethnographic powers for good? So that was part of it. Part of it was I wanted to give Lindsey the opportunity, someone who really, you know, they never really asked her opinion. Never really thought she had much to say about the world. And I remember when I started the interview, my husband said, you're going to get two words out of her. And I said, well, we'll see.

Well, we got two hours that first time. I mean, I love these interviews. They are a mess. They're a hot mess. They were never meant to be anything but transcribed. And they've got, they were sort of meant to be like our Sunday hangout phone calls. So we have snacks and cats walking through and bad lighting and words to our imaginary sponsors, and so much laughter and love and tears and like there's just everything in them. And yeah, we talk about autism and cancer. 

They were started to be a legacy project, in part, but they also started, I wanted to know what she thought could be better, how the process could have been better for her because we did our best. And when you're thrust, when you have a cancer diagnosis, you don't prepare for it. Suddenly you're like, it's happening. It is happening. So when we were in the big city cancer center, I remember taking the nurse aside, telling the nurse, my sister's autistic, she's going to need a little help. But I didn't know what I was asking. Honestly, I couldn't even articulate as the sister and caregiver what I needed. And I didn't know if that information was ever received, if it was transcribed, translated, what happened to it. I just needed to say something. So in my fantasy land, the next Lindsey and Paula who walk into a cancer center and the next caregiver or support person who takes that nurse aside and says, my person, my loved one, who just had this cancer diagnosis and their world was just rocked and they're autistic, they get the guide and maybe it helps them a little bit, that either they or they and their support people can fill it out, in a quiet moment say, hey, you know, this is the way I process and this is what I need for planning and predictability. And this is what I think about life. And I can go through the 10 P's, bring it back to that healthcare encounter and feel a little bit more empowered, have a little bit more language, a little bit more ability to speak about what it is that their unique version of autism requires to be more fully supported in that cancer experience. 

So that's sort of the fantasy. But how we got there, the interviews were, they started in 2022 and then I did them a year again later, just to check in and say, how's it going? And then the third one was six months after that, after recurrence had happened. She had a very rare brain metastasis, which is a unique expression of ovarian cancer, about one to 2% chance. And so the last one I reported in the hospice, actually. So the interviews sort of go over about a two and a half year period in the middle of a four year cancer experience. Where the guide came from is I was transcribing that first couple of interviews. You know, how do I express pages and pages and pages of a single person's experience, which it is just a single person's experience, into something that could be useful? 

Plus, at the same time, I was starting to do research and there isn't much about autism and cancer, other than the fact that we know that autistic people have the same chance — bad chance — of getting cancer as anybody else in the population, but they tend to have about a two to one poorer outcome. That's not a biology problem. That's a healthcare problem. That's a how are they being cared for and why. So how can we affect change there? The problem is that the burden of self-advocacy in a broken system is a burden. And this is the problem. You've got cancer, here's your homework, right? I don't love that. And I think that ideally, so this is why we need to both give the patient a tool, a useful tool, hopefully it's useful, and their support people. And we also need to be educating the healthcare providers to say, hey, if you have autistic patients, they may need the following things. Things may look different, sound different, feel different, experience differently. So we need both patient facing and provider facing educational opportunities and tools for this to get better for the next rounds of people who experience cancer as autistic people. 

Kristen Hovet
Just curious, too, to go back to, you were talking about the sort of having the autism diagnosis close to the cancer diagnosis. So I've heard that that's the case. That was the case for me, but in a slightly different order. My cancer came first and then autism a couple of years later or a few years later. But they were definitely connected in terms of the cancer journey kind of showing me, wow, I don't have the coping skills I thought I had. And I feel like I'm handling this different than other people I'm meeting. But I've heard that cancer or other medical crises or other life crises kind of happen side by side. So in your eyes, why do you think that happens so often? 

Paula Holmes-Rodman
Yeah, I don't know. Actually, I have heard that, there's a woman I know in the UK and she had a cancer, breast cancer experience. And it was through her experience of breast cancer that she then saw her own autism diagnosis as well. But yeah, it is interesting to think that when you get that biomedical crisis, or maybe it's some other kind of life crisis, a divorce, a death of a loved one or something or other, that, you're right, you think, maybe I'm not coping. Maybe what's wrong, the what's wrong with me question, right? Why am I not doing this the way that I think I should be, so-called, should be doing this? That maybe encourages people to just say, how does the world work for me? How does my brain work? 

So I don't know. I wouldn't like to speak for others in this situation. But it does occur to me that, yeah, you've got all of these people. And I remember, Lindsey and I talked a lot about that. We have two little nieces and we thought, well, if they are so unfortunate, you know, like that they are going to go through an educational system that will support them if they were to have any learning challenges, any sort of, you know, neurological differences. We hope that they will be better supported as children, so that when and if they have any biomedical crises, we hope that that will be more integrated later on. But it isn't right now. It's sort of like you're still treated as, we're interested in your tumors, your little lumps of rogue cells, but I don't really care about the rest of you that it's housed in. And I certainly don't care about how you experience the world. That's sort of the way it is right now. But in fact, it really does matter. It matters everything, everything from the expression of pain to decision making and consent, to compliance with if you are able, willing, able, possible to attend and even just understand what you're being offered in terms of treatments, that sort of thing. So it really does underlie, underscore, hold up everything. And I think that's one of the things is to say that, well, autistic doesn't matter if you've got cancer, it actually matters a lot.

In the same way, it's sort of like a social determinant of health. We start talking a lot about the fact if you don't have stable housing, if you don't have these sorts of things, it matters because it underscores that whole health system, it's how you experience it. And it is also a barrier to appropriate care because you have, for example, for Lindsey's experience, she didn't have a family doctor, so she was going through the walk-in system. So she was diagnosed very late, at a late stage cancer, which is true for many ovarian cancers. But again, she didn't have that, there was that medical mistrust, which is common for many autistic people, that I don't feel like I can show up as my full self. And then cancer comes to town. So you're already kind of behind the times. And then you're supposed to be navigating this whole new foreign world of cancer care. 

Kristen Hovet
Yeah, it's very, very challenging. I know for me with the cancer thing, it seemed like, well, for my whole life, I kind of felt different, but, and I'd had a lot of challenging and traumatic experiences. And so I kind of, my brain would tell stories to myself of like, this is why you're different, because of X, Y, Z. But then when I had cancer and so the physical stuff is happening and you're now like, your normal coping skills are getting bombarded by way too much information and challenges from all different directions. I think that broke down my ability to mask. And so I just felt like, I don't even know how to describe it... raw in a certain way. And then I would lose my ability to respond to the doctors. And I was like, what is that? That's not just past traumas, like there's something else going on here. And it's very scary for all of that to be happening at the same time. And then also, we might get into this later, but having a spouse or a partner that wasn't very helpful for various reasons and you know, their own toxicity and things like that, which doesn't help. 

Paula Holmes-Rodman
Yeah. I agree with that. That really resonates with what I observed in Lindsey. And this is what I call, and what she and I came to call, the yep, yep, yep response. In which, and I think that this is interesting, so Lindsey really wanted to be, again, it's that siren call of normal, to be well [as in healthy], to be the perfect patient. This is like, What happens when you get masking, social camouflaging, enacted wellness, mashing up with cancer? Oh heck no. And guess what? You are the perfect patient.

So if you are the oncology healthcare provider and you are my patient and I'm giving you a whole bunch of information, you're sitting there going, yep, yep, yep, yep, yep. Fantastic, I'm out of the room in five minutes. Great. Now, how much of that information have you taken in? Maybe, you know, not so much. How free do you feel to say, hey, I didn't understand that. You're literally speaking a way that I don't understand. I need to see it verbally. I need to have it orally, I need to see a video, I need you to talk to me more slowly, I need to speak to you twice, I need to have my support person or I don't need to have my support person. How free do you feel to say those things to me as your oncology healthcare provider if you have been trained all of your life, particularly as someone born into a female body, to be the untroubled, perfectly good patient? Not so much.

So part of, again, the self-advocacy guide is to stop that, yep, yep, yep response. And if the answer is, yep, gotcha, fine, great, next. It's great. But sometimes the answer is, I didn't get that, and I actually don't understand, and I have questions, and I don't agree, and we need to give space for all of that as well, and a language for that to happen in. 

Kristen Hovet
For sure. Yeah, it's like the people-pleasing thing that so many of us do.

Paula Holmes-Rodman
Yeah, yeah! 

Kristen Hovet
So it's like, autistic females or people born female, it seems that we have that times 10. I think all women have that to some degree, but for autistic women, it's almost like we have that to a pathological level, I would say. 

Paula Holmes-Rodman
I would agree. 

Kristen Hovet
It's part of the mask. 

Paula Holmes-Rodman
Yeah, and so when you get that in a cancer space, it actually is detrimental to the, actually it can be, detrimental to the outcomes, I think. 

Kristen Hovet
Totally. Yeah. I can see that for sure. I know that people are going to want to know where to get the guide. 

Paula Holmes-Rodman
I'm so excited. I actually feel very emotional about this because Lindsey and I spoke about it on her last night on Earth. She says, I really want the guide to come out. And I said, yeah — I'm not going to cry — I said, it's going to happen. It's going to happen. So I'm very, very grateful that Autism Canada is using its digital wizards to make it happen. And it will be available free of charge on their site. You can download it. There will be a fillable PDF as well, as something you can print out and write in depending on how your brain works, right? Depending on what you need. 

[The guide] has 10 sections with a total of 77 questions, which is a lot of questions. And there's also a resource guide at the end, which hopefully, you know, might be helpful for some people. Everything from lists of things that you could put in a comfort go bag, right? Because if you're spending a lot of time in a hospital, in an emergency room, which is miserable for anybody, you know, if you have a little bit of predictability and planning, it's like, oh yeah, these are the things that I need. And you know you're going back and forth to do chemo or radiation. You're doing a lot of appointments. What can you put in your bag, literally, to make sure that you're more comfortable? 

The guide will be available [around the] 20th this month [November, 2024]. And the other ideas, we're going to have posters in the big city cancer centers with the QR code, and that I also will be working with my contacts through the cancer care world to make sure that if you are, because when you're first diagnosed with cancer it's a cancer, you're not just diagnosed with cancer, it'll be ovarian or breast or something or other. So we want to make sure that if you're accessing a patient support group, if you're accessing Ovarian Cancer Canada or a breast cancer support group that there's something that says, are you autistic and also, you know, as it is cancer, this is for you and that you will be sort of guided that way. But it will be available on Autism Canada's site, free of charge, downloadable, fillable. So I hope that people use it, ask for it, and I hope that it's useful. 

Not every question is going to be useful for every person. I also see it as a living doc. So I've tried to use the most inclusive language possible. We had a number of people through Autism Canada who are autistic themselves give me a lot of feedback and loop back and like, you forgot this part. You forgot, what about this? I'm like, okay, good, tell me everything. I want to know it all. This is just a one person show with, you know, me running it by Lindsey as well. I see it as a living document that is not going to be helpful for everyone, but I hope that some parts are helpful for some people.

And the underlying question is basically, what do you want your healthcare provider to know about you that is not on your medical chart? So it's a kind of parallel chart. And I think particularly for autistic people with that word comorbidity, we don't have comorbidities, we have co-occurring conditions. And just for example, a little science story, when Lindsey had her brain tumor symptoms because she was autistic, it was like, those are panic attacks. That's stress. That's your autism speaking. Like, actually, no, those are brain tumors. And even when she was in hospice for brain tumors and the symptoms started up again, and it was so obvious to me and our family members, like, well, clearly this is what's going on. It's stress. It's panic attacks. She's autistic. Like, well, we are aware of those things, but perhaps it's also the thing that she's actually in hospice for! So this noise of co-occurring conditions is noisy, I guess you can say. 

So part of the purpose of the guide is to say, yeah, I have co-occurring conditions and they are these things. And they may or may not influence what's going on in the cancer space, what's going on with my cancer experience. But let me take a little bit of charge here and say, I'm going to tell you about it, rather than you tell me about it as my healthcare provider. So yeah, I've got some epilepsy or I've got this or I've got that and I have anxiety or I have this or I have that or I don't. And I need you to take me seriously. Ideally empowering, if it works well, that is my hope and my goal. And that it's also an educational tool for healthcare providers because if you are an oncology healthcare provider and your patient walks in with one of these guides, and says, hey, I've filled this thing out. I need you to listen to me in the following ways. Maybe that might ultimately affect some change. And then we're ultimately moving towards that goal of more equitable healthcare, which we all talk a great deal about. But none of us really know how to get there. So again, we can empower the patients and at the same time, we can educate the healthcare providers. So that's the hope of the guide. But primarily I hope that, if you are autistic and you're diagnosed with cancer, it is of use to you. 

Kristen Hovet
I had a look at the draft that you sent, which was, it looked really great. What I liked about it, too, is it was really easy to use. I went through it, kind of imagining myself filling that out as a cancer patient. And what struck me is that it's very comprehensive. It talks about, it goes through all the different things you should be considering. And it would have been so useful to me because I know I had tunnel vision most of the time through that whole experience. So I just want to tell people, if they are interested in looking at it, that's what you're going to see. It's very easy to use, very comprehensive. And also I think it would apply to a lot more than cancer. You can take those questions and use it for a lot of other conditions. 

Paula Holmes-Rodman
Yeah, I think, thank you for that. I'm glad that you found it useful. Thank you. But I also think that, I think one of my hopes is to adapt it for more than cancer. And I have had some feedback on that, that it is a more than cancer helpful situation because really when you're talking about things like predictability, planning, processing, place — it's got the 10 P's just to be kind of catchy and cool — that some of them are specific cancer related. Like when we're talking about pain, maybe you express pain differently, maybe those awful pain scales don't work for you. Maybe those little smiley faces, you know, the frowny faces, oh Lord, that does not work for an autistic person, for some autistic people. But you know, if you have, if you are recovering, if you have MS, if you have any other kind of symptoms or if you have a heart attack or you have any other kind of medical condition, a lot of these issues, if you're marching your way through the healthcare system, they're still relevant. 

Some of them are cancer specific, but not all of the questions are. So yeah, I think that it could be quite easily adapted. It is for adults or I guess, teens and up, but it could be adapted to more healthcare conditions. So if you have a serious medical condition and you're sort of navigating through a complex healthcare situation, look at the guide and see if it might be helpful for you. 

Kristen Hovet
And what can listeners do to support Lindsey's hopes and visions for the guide specifically? 

Paula Holmes-Rodman
Well, use it. I know that she would hope that you don't get cancer. But if you do, use the guide. And I hope that it's useful to you. I really do. And one of the ironic and sort of funny, beautiful, wonderful things is that after she had recurrence, we were still consulting our own guide. We were in the middle of it. You know, there we were in the acute neurosurgery ward and in the hospital, like, wait a minute, what did we say about this? And I mean, it's sort of ironic and funny, but also true. 

So it's something that is kind of a generative, iterative, process. It's like, we have to revisit this. It's like, you think you've got your... I know what I need for planning and predictability. I know how my brain works for processing. But as those challenges come along, as your health either improves or deteriorates, you get other challenges or questions, revisit it, rethink it. Don't see it as a done deal. See it as something that you can also learn from. Because I think that when we had the guide and then we did the guide ourselves, which was created from the interviews, we learned things from doing, answering the questions. I think that it can lead to quite a bit of self-insight, about how you move and work in the world and what you need to be successful in a healthcare setting. And so ask for it, use it, look for it. And I hope that you find it useful.

Kristen Hovet
To kind of change the direction here, I just wanted to know about Lindsey's broader hopes and visions for autistic people. What are some of the main messages she wanted broadcast? 

Paula Holmes-Rodman
Well, Lindsey was a dreamer for sure. She really believed in social justice. She believed that people should be valued and treated and loved for exactly who they were. And she actually just didn't talk the talk, she did it, you know, there was nobody better on your team. If Lindsey was on your team, she was on your team. So if you had a success, you know, like your cat ate the new cat food, she was cheering you on, let alone something like really amazing happened in your life. There was nobody better. So it's the cheering each other on in those really authentic ways. And the same thing is if something bad happened to you, she would be the person, I mean, she would be in hospice asking me how my life is going. I'm like, well, actually, it's okay comparatively. So I love that about her. And I always try to think of that now that she's gone. It's like, how can I embody that spirit? What does it mean to really be on somebody's team, to just show up in that authentic way and to really value the, I mean, this sounds like very Hallmark card, bumper stickers, but to value those little things like, those were amazing waffles or my cats are so cute or there's a beautiful sunrise or I found this amazing thing at the thrift store and actually celebrate those things. Actually celebrate those things for ourselves and for other people. And because a lot of us kind of talk about that a lot, but very few of us actually do that. And Lindsey really did. And that is a beautiful thing. And one of the things I miss the most about her.

And she really believed in the possibility that, but sometimes in a little bit of a naive way, it's like, well, if we all just get along and we all just support each other, and I'm like, it's not always so easy. But, you know, I love that spirit. I love that almost unadulterated belief in the possibility of the goodness of human beings. And so she was disappointed when human beings weren't good. She really thought that they could be better, that they should be better, that we all have the capability to do that. I mean, it sounds a little saccharine, I guess, to say all of this, but that's truly who she was. And I think that that spirit is something that we can embody. 

Kristen Hovet
It sounds like she had a lot of resilience, even though it sounds like things were often very hard for her growing up and not feeling normal. And to have that resilience and that spirit of optimism is very awesome to hear. 

Paula Holmes-Rodman
Yeah. She used to say, I've been hanging in there since 1966. You know, and so I mean, that was sort of her, right? It was just sort of like, watch me, like just watch me. And I mean, she never swore. I have the mouth of a sailor, but you know, she didn't swear, but it was sort of a big, sort of almost like an F you to the world. As in like, I could do this and you can't tell me I can't and there's no reason I can't.

And I mean, that had to do also with beating cancer. So I think part of the problem was, when the cancer came back, she was really disappointed, like almost personally offended that it had come back. Like she had done something wrong. And I'm like, no, no, no, no, no, no, this wasn't a personal failing, but no, she really had a lot of resilience and a lot of, because when you rely on that work ethic that like, I can. Why not? I can, I can totally do this. And so I try to embody a lot of that spirit when I'm feeling a little kind of, nah, I can't. 

Kristen Hovet
Yeah, for sure. For sure. One very challenging aspect of Lindsey's life that you shared in a video post for Advance Care Planning Canada earlier this year, is that Lindsey was married to someone who was emotionally abusive to her. And I think you also mentioned financially abusive. How did you become aware of that abuse and how did it impact Lindsey?

Paula Holmes-Rodman
The video came about, I ran into somebody from Advance Care Planning at a psychosocial oncology conference and they were talking about the equity work they were doing in Advance Care Planning. And I said, do you do anything for autistic people? And they said, no. And I said, well, you know, we need to have a think about this because when we're talking about Advance Care Planning, we're talking about decision-making and consent. We're talking about who has the right as adults to make decisions about their own healthcare and how can we make those decisions known? How can we express them? How can we make sure everybody's listening to our decisions? And that was challenged in Lindsey's cancer situation. The spouse that she was married to, she married late in life after being unmarried all of her life. And I was very happy that she found somebody to love. And I thought he was a little quirky.

But you know, I was sort of the live and let live and they had their routine and they had the things that they liked to do together. And I wanted Lindsey to be happy and he had things that she valued like a home and a car and they got cats together. And I think she also felt very sorry for his story of being a victim for all of his life. And she was very loyal and she wanted and believed in love. And so I think everything, in my opinion — she was also very private — was going along just fine until cancer came to town. And then I lived in a different province and he was there and able to, you know, take her to some appointments. And again, everything was sort of okay until recurrence happened. And when the recurrence happened with the brain tumor, the sort of precipitating incident, what happened in the acute neurosurgery ward. And a nurse said, you know, basically advance care planning, get your affairs in order, even though they had done a craniotomy, they had removed the tumor, they were going to do radiation, you know, we're throwing everything at it. No one's writing off, no one's ending the story now, but statistically, this is probably the beginning of the end. 

And I took that very seriously because I believe very strongly that everybody should have the right to make their own medical decisions. Everybody. And her husband said, I'm the husband and I will make the decisions. And for me, that was a hell no. And I knew that, from his past experience and what he had shared, the medical decisions that he would make would be different from my sister's. And also that Lindsey's would be different from mine and that's okay, mine are irrelevant here, right? Mine are completely off the stage, but so are his. What were important were Lindsey's. So that was my cue to make sure that Lindsey had the legal and the financial right to make her own decisions, which I did lock down for her. And she was able to make all of her own medical decisions. And one of the things I feel proudest of — although that's not quite the right word — and most emotional about is that she was five months in hospice, in part because of the really unstable home environment by then, but that she made her own medical decisions right up until the end and that it was the nurses and the doctors looking at her in the eyes asking what she wanted. And her husband is texting me this crazy garbage. I'm like, yeah, that's not happening because the doctors are talking to her.

And she is saying what she wants. And that is what's going to happen. And that's what happened. And that was a beautiful thing. And I thought that is the final act of protection that I can do. I can't stop the cancer. I can't stop her dying at 57. Those aren't in my power. But what I can do is make sure that the medical professionals will take her seriously and know that she has the complete capacity and ability to say, yeah, if you tell me what's going on in my brain and my body, what my options are, what my choices are, what the consequences are for my choices, you know, if this then that, if this then that, absolutely she can understand. And she made choices and she died in peace and surrounded with me by her side, without him. I was her choice. And we had these beautiful family meetings in the hospice. Things went off the rails. There were violent threats and police called and it was kind of a bit of a rodeo. But we had these family meetings where Lindsey spoke up, spoke her truth in these family meetings with social workers and doctors and everybody there, which of course was met with not a lot of happiness on his part, let's put it mildly, but she was speaking her truth in those last months. It was a beautiful thing. It was a beautiful thing, including just a few days before she died, was the last meeting. 

All of that, I have a great deal of gratitude and grief for, to be honest. I have so much gratitude that that happened and grief that it didn't happen earlier. But it did happen, which tells me it can and should happen. And I hope that for every autistic person, the cautionary tale in this and the reason for that video, we hope it goes well and that you live another 40, 50, 60 years. But even so, we all have the right to make our own medical decisions. Even if you have the most loving, wonderful relationship, you still have the right to make your own medical decisions. And they may be different from your partner's, and that's okay. And it is worth having those conversations. And that's why it's built into the guide, who helps you make decisions? How do you express consent? is one of the questions. If I have an important decision in my life, I have people who I consult, who I rely on to help me. Nothing wrong with that. But ultimately, I want people to know that I'm the one that's going to say yes or no to something. And when we're talking about treatment for cancer, it really matters, or end of life care particularly. 

Kristen Hovet
That's awesome. And it's hard to just sit here and not cry, but I'm trying really hard. 

Paula Holmes-Rodman
Oh, if we don't cry, we're not doing it right!

Kristen Hovet
Well, I'm just imagining also, you talked about how Lindsey had this need to be the perfect patient. And I think just knowing what that feels like also in a relationship, wanting to be the perfect partner, the perfect wife, the perfect girlfriend, and how that clouds your ability to see yourself as a human person, too. Like I'm a human and I need the same amount of care as anyone else, but it's just... time and time again, how often we completely ignore our own needs for the other person.

In my experience, I went literal years without really acknowledging the behaviors of the other person as harmful and damaging. And sometimes, you know, I even think my cancer was caused by being with that person for the length of time that I was with them. And I just wonder how many other autistic people have that experience. I know from reading the research, which isn't very personal, but there are stats out there that talk about that we more commonly find ourselves in relationships where we're being abused in some way. And some of it is so, it's so invisible because we're not being, you know, physically abused. I wasn't physically abused, but manipulated and abused in other ways that are so much harder to see and so much harder for people around us to see. So it just, like my heart's heavy just thinking of all the work that goes into covering for these people and then also in our own mind, covering for them. And then when the reality finally hits, it's so hard to, now what do I do? You know, because in a lot of ways we rely on that person.

I was lucky enough to be able to leave them, financially, but it took several years, especially after cancer, to be on my feet financially again. So living with them just so I could save money, you know... I don't know where I'm going with this, but it's just so hard. And my heart goes out to all the people that find themselves in that position and that situation. Yeah, it's so hard. And I know you had a really deep connection with Lindsey. It's very obvious and she's so lucky that she had you. What's your insight as to why these relationships are so common?

Paula Holmes-Rodman
Well, I've thought about this, of course. And when I was speaking to a counselor after Lindsey died, I felt like I should have done something earlier. I should have intervened. And what she said to me is, well, you know, I guess she sort of used my own stuff. She said, well, Lindsey was a complete adult and she had her own decision. And I'm like, I know. But she said that when basically the poop hit the fan, she relied on you. She relied on you.

When her husband revealed his true self, my impulse was, please get this person out of her life completely. Time is short, the water is rising. Please no, no, just not a single second [more]. And I think that Lindsey really struggled with that because she saw that, like she didn't deny the way that it read, and she was appalled and it was abhorrent. Everything from the asking about money to the disgusting human being tactics, right? Things that really grated against her sense of what is right in the world, like a really strong sense of what is right in the world. And yet there's that sense of loyalty and that sense of, but he's nice to me sometimes. He can behave. He can behave. And that was, I think, confusing to her because he could come in and behave well, behave kindly. And she was lonely. She didn't have a huge group of friends.

The small number of family members, we were all dancing as fast as we can. But, you know, it's scary and it's lonely. She didn't have a huge support system. She had lost her job the year before simply because the opportunity had shut down and she wasn't able to find something else because she was sick right away. So there was no other strong support system to step in and say, hey, we got you girl. You know, there was nobody else. So there was that isolation, that physical and social isolation. But you know, Lindsey used to tell me, even in the interviews when you watch back, she says, you know, a lot of autistic people end up in abusive relationships. And she would just sort of spout this off. And I went, huh, I wonder what she's trying to tell me? And when I was watching those interviews again, I thought, why didn't I listen? But then I think that she didn't see it as abusive until... her own relationship as abusive, until he started, you know, demanding money and demanding, you know, you are going to do this, I will pull you out of care, I will take you out of that place, you can't go to that rehab facility. I mean, these sort of things, it's like, wait, people actually say these things? Like, yeah, yeah, they do. They do. And it's abhorrent. And I think it happens a lot. 

And I think it actually probably happens to people who are not autistic as well. And I think that's one of the things that, again, good to circle back to the advance care planning. If you're a healthcare provider, you assume you've got a patient coming in that they're saying, yes, no, yes, no, this is what I want. You know, let's question that. Are they actually making their own decisions or is there somebody in the background kind of talking to them saying, you can't do that because dadadadada. So I think we need, as healthcare providers, to be more aware of, are people... I mean, I think that we are sort of measuring capacity [already], but we're measuring intellectual capacity. But do people have the social, structural capacity to make their own decisions? Are they being supported to make their own decisions? And I think that's sort of part of the Lindsey story that we can take forward. 

And again, I would encourage your listeners to, if they're going into a healthcare system or healthcare situation, either for themselves or for a loved one, to kind of lock that down. You don't need to lock down the decisions, because we don't know. A healthcare situation can evolve, devolve in certain ways. We don't know. But what you can say is that no matter how this goes, I know that I can make my own decisions. Me and this person and that person, the three of us, the five of us, the 10 of us, or just me, I've got this. And if you tell me how and in this way and give me this information, I will be able to sort this out. And these are the people I trust to help me make decisions. And this is somebody who's kind of a little bit, doesn't have my best interests in mind. And to be thinking about that going forward. So you don't need to decide necessarily, I will have that treatment, I won't have that treatment, unless you feel very strongly about certain treatments, of course that's your right. You have a right to feel that way. I will never do this. I will always do this. But most of us don't know how the story is going to go, but we do know who we want to walk with us, who we trust to walk with us. And that's what's worth sorting out. And that makes all the difference in the world, I think. And as support people for autistic people, that's what we can help lock down. And it's worth going to lawyers and saying, hey, this is kind of looking a little sketchy. Can we get these legal documents? Can we get supported decision-making documents? Can we make sure that we've got trusted support people in this person's corner going forward. So that no matter how the story goes, that person's making the decisions. 

Kristen Hovet
I know from when I was going through it, one of the first questions they ask, they ask you to bring, you know, your partner in with you or another family member that's going to walk with you through the journey. And the person you bring in, they assume that that person has your best interests in mind, the person's on their best behavior.

But at the same time, like I remember when I got my autism diagnosis, like the assessment process, part of it included talking with my partner and they were very quickly able to determine — like just a psychiatrist, psychologist — was quickly able to determine this person lacks interpersonal insight, and just a few questions helped them determine that. And there could, those could be infused in one of the first, you know, cancer appointments that you have and someone can really identify that this person might not be the best person to help you make decisions, especially when you're in a lot of pain, when you're highly medicated for several months. So I don't know, I think that there can just be like small changes made that can make a huge difference in that initial part of that journey. 

Paula Holmes-Rodman
Yeah, that's a really good idea. But I mean, on the other hand, it's kind of a double edged sword, right? Because if I walk in with my partner, and I'm like, this is my person, right? Whether it's my mother or my husband or my sister or whoever. I'm like, this is my person and you're my healthcare provider. And you immediately start saying, well, how stable are they? Right? And in what best interest? So then immediately we're having couples counseling or, you know, family counseling, but you're right. In some ways, do you take my, if you are my healthcare provider and I'm your patient, are you going to just take my word for it? Or do you trust me that I've got all this stuff sorted out before I even walk in your door? 

But you're right. It's kind of a double edged sword. But I agree with you that in some ways we almost need that, you know, if this then that kind of questioning. And I think part of it, too, is that at the beginning of a cancer story, nobody really imagines it's going to go terribly badly. I mean, I remember actually because Lindsey was diagnosed at stage four, she was handed a palliative care pamphlet. Or actually her husband was handed a palliative care pamphlet. And he shoved it in his jacket pocket, and said, I'm not showing that to her. And I remember at the time I was personally traumatized. I was just trying to like, literally navigate her through this rabbit warren of appointments, this, you know, day long appointment is what it seemed. But palliative care can be very supportive from the beginning. It's not just end of life care, even though she had four plus years after that, that can be that kind of psychosocial care, the kind of things that you're talking about.

So you can ask for psychosocial referrals right off the bat. And that's the kind of entryway into maybe that more complex care that you're talking about saying, hey, can I have a psychosocial referral? Can I talk to a social worker, please? And if you're in one of these cancer centers, you have a right to ask for those things. And I would encourage frankly, everybody to do that. And then you have somebody and if you can, if you're able to, to attend those appointments. And sometimes they can be virtual. Sometimes they can be in person, depending on what your abilities are and your location. To just talk about, hey, these people are in my corner, but I kind of wonder or I wonder how this is gonna go. And sometimes, and I think this was in Lindsey's case, things can be going along just fine. Things can be just kind of fine. There might be a few little pink flags, red flags, maybe, but things can be just fine until you have a crisis, right? Until you have a crisis like cancer or, you know, a job loss or something like that. I would definitely ask for that social worker, ask for that psychosocial consult right away. And you should be able to receive that. And that might help, you know, your listeners kind of sort through some of those questions early on and get some of that sorted out in their own mind. And then maybe like, you know what, I kind of need to rethink this. Who is going to be my person? Who's the person who's going to really be in my corner. Because that is one of the hardest things as a caregiver is to put your own personal beliefs, hopes, dreams, fears, everything to the side and do what needs to be done for the patient, for the person who's actually sick. It's a really hard thing to do. So if you have someone in your corner who can do that for you, you're very fortunate. And you shouldn't have to do it all for yourself, but sometimes you do.

Kristen Hovet
I know we're going over, but is there anything I haven't asked you about that you'd like to discuss? 

Paula Holmes-Rodman
If you're really interested and you want to watch the Lindsey Interview Project, you can watch all of us with the bad lighting and the cats and the snacks and the chitchatting away and the bad questions and the rambling answers. We would love to have you hang out with us. So that is available on YouTube. And really, please use the guide. Talk about the guide. I hope that it's helpful and ask for it and use it. If there's any feedback about the guide or how you think it could be useful for other than cancer situations, I'd be very open to knowing about that as well. And I had to write the dedication for it. That was hard. 

Lindsey used to say, we wish you well on your journey. That was a very Lindsey thing to say. So I will, I will end with that. So if you are diagnosed with cancer and you are autistic, Lindsey would say, I wish you well on your journey.

Kristen Hovet
A huge thank you to Paula for being my guest on The Other Autism podcast. And that's all I have for you today. Thank you so much for being here. Until next time, bye.