EP189: Caroline Elton on the Human Experience: Autism, Family, and End-of-Life Care

Navigating Autism and End of Life: A Conversation with Dr. Caroline Elton

In this episode of The Girl Doc Survival Guide, host Christine invites back psychologist Dr. Caroline Elton, who has extensive experience supporting doctors' emotional wellbeing. Dr. Elton discusses her new book, Looking After: A Portrait of My Autistic Brother, and touches on end-of-life care.

00:00 Introduction and Guest Welcome

00:59 Discussing 'Looking After: Portrait of My Autistic Brother'

01:22 Lionel's Early Life and Autism Diagnosis

02:51 Mother Blaming and Historical Context

05:09 Lionel's Leukemia Diagnosis and End of Life Care

05:57 Challenges of Communicating About Death

11:42 Autism Hospital Passport and Caregiving

13:03 Reflections on Lionel's Life and Impact

16:42 Final Thoughts on End of Life Care for Autistic Individuals

Transcript

Christine Ko: [00:00:00] Welcome back to The Girl Doc Survival Guide. Today I have a repeat guest, Dr. Caroline Elton. Dr. Caroline Elton PhD is a psychologist who has spent over two decades helping doctors navigate the emotional and psychological challenges they face in their careers. With academic credentials from Oxford University, the University of Pennsylvania and University College London, she combines rigorous training with an empathetic human-centered approach to career support. She is the author of Also Human, a deeply insightful book about the emotional lives of doctors, and she has two new books out, one called Looking After: Portrait of My Autistic Brother, published by Penguin, as well as Career Planning for Doctors: An Evidence-Based Guide, published by Oxford and co-written with Naomi Elton, who has the same last name, but they are not actually related.

Welcome to Caroline.

Caroline Elton: Thank you so much for having me.

Christine Ko: [00:01:00] Today we're gonna focus on your book, Looking After: Portrait of My Autistic Brother, because I find, in my own life, that as a doctor, I don't really know the day-to-day life experience sometimes of being a patient. Could you tell us a little bit about your brother? 

Caroline Elton: My brother was called Lionel. He was nearly nine years older than me, so I was born in 1957. He was born in early 1949. I think that's quite important; it was not that long after the war. The prevailing ideas about autism at that point were that autism was caused by refrigerator mothers. So mum was blamed for the fact that her son was a late talker and didn't seem to be responding to affection and all the kind of typical signs of autism. Mum was blamed. Another important thing [00:02:00] about the fact that he was born in 1949, in the early post-war period, was that actually there was quite a lot of pressure on mom to put Lionel in an institution, rather than to care for him at home. The notion amongst clinicians may have been that autism was caused by refrigerator mothers, but mom was more of a microwave mom. She was focused, warm, absolutely determined not to put her son in an institution and to help him find a way in the world. Mom lived till she was 94, and that was her life's work, really. The book begins at mom's deathbed when the challenge was passed over to my sister and to me. 

Christine Ko: Yes. When you say that she was blamed for it, I'm reminded of a recent conversation I had with a colleague of mine in dermatology named [00:03:00] Dr. Jane Grant-Kels, who for a period of time her son had a stutter. She and her husband met with the school about his stutter, and the school was like, Oh, you're a working mother, so that's why he's struggling. And she commented that her husband interjected and said, Why wouldn't you say the same thing about me, then? I am a working father. If it's the fault of a working parent, then it's both of our fault . 

Caroline Elton: Yeah. 

Christine Ko: The common theme is this theme of blaming a mother for a child's stutter or autism or any diagnosis or behavioral problem.

Caroline Elton: There is definitely still a tendency towards mother blaming. That's there, and that's still there. The one thing that one can say to give a little bit of justification, that 1949 was not that long after the second World War, when the world was [00:04:00] reeling from the knowledge of the eugenics that Nazis had been practicing, and that therefore to be talking about genetic causes was very politically sensitive.

Christine Ko: Interesting.

Caroline Elton: So that there was a huge thrust looking at the environmental as a backlash against what had been the eugenics of the Nazis.

Christine Ko: That's fascinating. Thank you for giving that background. Definitely in today's world, I think many of us feel uncomfortable with eugenics, even though it's more than possible compared to ever before to make a world....

Caroline Elton: yeah. Prenatal diagnosis and all that sort of stuff.

Christine Ko: Yeah. Absolutely. This mother blaming. I've had that experience myself, and it's a horrible feeling.

Caroline Elton: To be blamed in that way. Horrible for my mom. Later on, she encountered some phenomenally good care for my brother, which [00:05:00] lasted throughout the whole of his life. The team. Mum just wrote to everybody and anybody, she was tireless. And his team helped my sister and I when LIonel was diagnosed with leukemia. This was less than two years after mom died, and suddenly, my sister and I had to work out how we were going to support him through treatment and end of life care. We knew right from the outset that he would have six to 12 months, and he had six months, but there was almost nothing around in the literature on end of life care. My field is the wellbeing of doctors, I am an academic and and a practicing psychologist. So I immediately went onto PubMed and trying to find out what has been written, what is there, and there was almost nothing. And that was one of the reasons for writing the book.

Christine Ko: Can you talk about that illness experience from your point of view? 

Caroline Elton: There were huge questions about whether we [00:06:00] told him about dying and death, that he would have six to 12 months. He knew he had leukemia. My mother had two close friends who'd had leukemia, but it was chronic. Both had lived a long time with it. Lionel had acute myeloid leukemia. So Lionel knew about these two friends. They were old friends of my mum. And we referred to those. And then we had to make the decision as to whether we would tell him or not. So again, I went back to some of the people at the Maudsley Hospital in South London who had known him for over 50 years. The team consensus was not to tell him because he was hugely anxious. He found waiting really difficult. If the nurse would say, Oh, I'll be back in five minutes. For an autistic person, five minutes meant five minutes. It didn't mean five minutes and two seconds, it meant five minutes. And, he would get more and more [00:07:00] anxious about the waiting. And we saw how waiting for treatment or waiting for a scan or waiting for all sorts of different things, how that affected him. And, if you can't wait for an MRI, and you are distraught, when it's an hour, when it should have been half an hour, how can you wait for your death? He would've wanted to know when, which day would he die? Of course we couldn't tell him that.

So the consensus was that death might overshadow everything else in the time he had left. He never asked. If he had asked, I would've told him the truth, but he didn't ask, and we didn't tell. So there's quite a lot in the book about that. But also there's very little in the literature about end of life care. There was a very good American paper about a living will, but there was really almost [00:08:00] nothing about end of life care for people with autism, which is really shocking, but I think links back to what I started with in that people like my brother who didn't speak till he was four or five or whatever, they would've been in institutions. They would've been institutionalized and they would've died young of infection and neglect. But it's really a gap, and people need to be thinking about that. And one of the things I wrote about in the book was that whilst I don't regret not telling Lionel that he was dying, I do regret at the time of mom's death not talking more about death. Mom died in September, 2017 and Lionel was diagnosed in June, 2019, so less than two years later. This would be one piece of advice I would give. At the point of mom's death, he understood that everybody dies. And I think I really wish [00:09:00] that we had talked more about, What might you like at the end of your life? Not when the grim reaper was banging at the door so loudly. 

Christine Ko: Yes. It's hard; obviously, I can't presume to, comment on your decision at all. So it's less a comment on that as the fact that we all are human, as in your first book, and we all are finite and going to die. So, in that sense, I understand both your comments, your decision to not tell him, but also your regret of not talking more to him about death and what his wishes might be.

Caroline Elton: Yeah, that would definitely be a piece of advice I would give to family members and to clinicians about talking about death early for autistic people. The reason we didn't was mainly his anxiety. It was absolutely stratospheric. He was always incredibly anxious. [00:10:00] He just found all the uncertainty involved, and of course it's, it's inherently uncertainty. You will know, you'll know probably yourself, Christine, from your experience of being a patient as well as a clinician. There's always uncertainty. With his leukemia. You'd go in for, he was on immunotherapy, you'd go in for an injection, but they'd run his bloods and they'd discover that, he needed a transfusion. All you could tell him was that he might or might not need a transfusion, but he wanted to know he would or he wouldn't, and when he would be finished. And every single aspect of treatment is like that. 

Christine Ko: Yes. I feel for you because medicine unfortunately is so uncertain. Autistic or not, all of us, I think, when we're patients, or even just in terms of our lives, I think, many of us, not all of us, but many of us would want to be like your brother and just [00:11:00] know, What day? Or, What's today gonna be like? Will I get a transfusion or not? Will I need one? I think that we do want to know our future, especially when we're in the midst of something hard. I think ultimately it's, Am I gonna get through this or not?

Caroline Elton: He ran his life in such a way to bring in considerable consistency. So he would get up at the same time and go to the shop around the corner to buy a newspaper and some breakfast and have the same breakfast. He managed his life and managed his anxiety by building in a lot of consistency and routine. Treatment for acute myeloid leukemia is just gonna throw that up in the air. In the UK, the National Autistic Society produces an autism hospital passport. So that we filled it in, and I write about that in the book, and you give it to the clinical team when they're admitted. So they know signs of distress, what may be soothing or comforting, [00:12:00] interests, all these sorts of things that could help.

Christine Ko: You and your sister and your mother were great caretakers for your brother and advocating for him, and I think universally applicable lesson would be that we all would have preferences on how to be treated as a patient or even in life, really. It's interesting to hear that in the UK you have this passport that kind of gives some instructions, like a manual to someone.

Caroline Elton: The person fills it out themselves with support. And then you hand it over to the clinician. So he talked about he liked listening to his radio. That was soothing. He found waiting times difficult. The things that helped and the things that didn't, the things that were a hindrance. And I think it's a very good idea.

Christine Ko: Aside from thinking about how we wanna be treated and also grappling with the uncertainty of life and the certainty of death. Are there [00:13:00] other universal lessons from your experience with your brother? 

Caroline Elton: I'm the youngest in the family. There was my brother, my sister, then me. As I said, I'm nearly nine years younger. If I look at the things which I imagine at the end of my life, whenever that is, I will look back and feel satisfaction about my children, my grandchildren, my marriage, my work as a psychologist, the books that I've written, friendship groups.

Lionel was single. He never had a romantic partner. I talk about that in the book. He didn't have children or grandchildren. He didn't really have friends in the way that I had friends. He went to music college. He was a very good musician but not good enough to earn living by it. He was numerical and had some of the savant numerical skills. For his longest job that he held, he did the [00:14:00] post in the post room of an autism charity. So, it would be possible to look at his life and think what a, sort of, not exactly bleak; but it would be possible to compare our lives and just think of the deficit. But what I saw particularly was how many people were really touched by his life, the impact that he had on so many people who really loved him and cared for him. That really was a life lesson for me.

Christine Ko: Mm-hmm. Maybe a lot of the traditional ways in which we do define ourselves are maybe not as important.

Caroline Elton: They can be important to us, I think, but there can be other people who can have rich lives that give satisfaction and meaning to them. It's not the case that everybody's life is equally easy or pleasurable. That would be absurd, [00:15:00] but we do need to be careful of imposing one set of frameworks or values on another.

Lionel played bridge. He had the capacity to be very good. In his last few years, he lived very close to where my mother lived. And a friend of my mother in the neighborhood saw him skipping back to his flat because he played a very good hand of bridge, and he was skipping down the road. As you said, Christine, in my introduction, I've had a very academic trajectory: Oxford, scholarship to University of Pennsylvania, UCL, doing my PhD, all that sort of stuff. You can get so wrapped up in that. 

Christine Ko: Yeah. What is really the measure of a life and the importance of a life, and how would we really measure that? Even for myself, but really for someone else, whether that's my child or my sibling or my parent. It does relate to how we choose to spend our time. 

Caroline Elton: There's very [00:16:00] interesting literature, which I briefly touch on in the book, that if you grow up with an autistic sibling, you are more likely to go into the helping professions. It makes perfect sense for me that I'm a psychologist because if you grow up with an autistic brother whose behavior is quite unusual and you're trying to understand what's going on, it makes sense that you might end up being a psychologist because your own mind and somebody else's mind who's clearly rather different become very interesting.

Christine Ko: Yes, absolutely. That makes sense. A lot of food for thought on the meaning and measure of a life, not only for ourselves, but those around us; and it's wonderful how you're contributing to the end of life care. Do you have any final thoughts?

Caroline Elton: There was really almost nothing in the literature about end of life care for people with autism. It's really time for that conversation to start. 

Christine Ko: Thank you.

Caroline Elton: Thank you so much, Christine.