Laurie Frankel’s novel “One Two Three” features Monday, a character with autism spectrum disorder. But in Monday’s world, she’s accepted and gets the accommodations she needs. Autism expert Dr. Andrea Huebner and Laurie reflect on the many ways autism can manifest — and how we might create a world that more closely resembles Laurie’s fiction.
We talked with:
- Laurie Frankel is the New York Times bestselling, award-winning author of four novels. Her writing has also appeared in The New York Times and other publications. She is the recipient of the Washington State Book Award and the Endeavor Award. Her novels have been translated into more than 25 languages and been optioned for film and TV. A former college professor, she now writes full-time in Seattle, Washington where she lives with her family and makes good soup.
- Andrea Huebner, Ph.D., L.P., is a Mayo Clinic pediatric neuropsychologist and autism expert. Dr. Huebner has performed diagnostic evaluations for thousands of children with autism and is still fascinated by the uniqueness of each child’s autism experience. She is involved in advocacy aimed at prompting communities to recognize the enormous potential contributions of individuals with autism.
We talked about:
In this episode, Dr. Millstine and her guests discuss:
- The many faces of autism. Using Dr. Huebner’s expertise and Laurie’s characters, we reflect on the range of features that can show up in someone with autism spectrum disorder. Autism can look very different in different people, but there are common themes that can help us better understand this neurodivergence.
- Seeing the strengths. Rather than pathologizing Monday’s autistic characteristics, Laurie sees them as simple differences — and in some cases, as strengths. Getting to know someone with autism spectrum disorder (whether in fiction or real life) allows us to recognize and appreciate these strengths.
- Imagining a better world. Laurie’s book is set in an inclusive community that has been set up with a universal design to accommodate people of different abilities. We consider how we could make the real world more accommodating for people of all abilities.
Can’t get enough?
- Purchase the Mayo Clinic Press children’s book “My Life Beyond Autism.”
- Purchase “One Two Three.”
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- From Amazon.
- From Barnes & Noble.
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- If you’ve got ideas or book suggestions, email us at readtalkgrow@mayo.edu.
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Read the transcript:
Dr. Denise Millstine: Welcome to the “Read. Talk. Grow.” podcast, where we explore women’s health topics through books. In the same way that books can transport us to a different time, place or culture,“Read. Talk. Grow.” demonstrates how books can also give a new appreciation for health experiences and provide a platform from which women’s health can be discussed. At “Read. Talk. Grow.,” we use books to learn about health conditions in the hopes that we can all lead happier, healthier lives.
I’m your host, Dr. Denise Millstine. I’m an assistant professor of medicine at Mayo Clinic in Arizona, where I practice women’s health, internal medicine and integrative medicine. I am always reading and I love discussing books with my patients, my professional colleagues, and now with you.
Our book today is “One Two Three” by Laurie Frankel. Our episode today could go in many directions, but we will particularly focus on autism spectrum disorder, or ASD. According to the CDC, an estimated 1 in 36 children has been identified as having ASD, while 1 in 6 has a developmental disability. Being so common, most listeners will have some familiarity with autism and autism spectrum. But the hope is that we will all understand the experience of being a teenager with ASD better after our discussion.
I’m so excited about my two guests today. Our first guest is author Laurie Frankel. She is a New York Times bestselling, award-winning author of four novels. Her writing has also appeared in many other publications. She’s the recipient of the Washington State Book Award and the Endeavor Award. Her novels have been translated into more than 25 languages and been optioned for film and television. A former college professor, she now writes full-time in Seattle, Washington, where she lives with her family and makes good soup. Her latest book is “One Two Three.” Laurie, welcome to the show.
Laurie Frankel: Thank you, Denise. Thank you so much for having me.
Dr. Denise Millstine: I do need to talk to you a little bit about my experience with you as an author. Before we dive into “One Two Three.” The first book of yours that I read is “This Is How It Always Is.” This book just simply blew me away. If some of our listeners haven’t read it, they should immediately. That’s another family story, but that time focused on navigating gender transitions, and I found that it informed my conversation with patients in ways that I couldn’t have predicted before I read the novel. This was part of the inspiration to create, “Read. Talk. Grow.” Laurie, I just want to thank you for being part of that process.
Laurie Frankel: I just want to thank you for also being part of that process. I’m thrilled. I’m touched, and I’m also delighted.
Dr. Denise Millstine: It’s really an important topic and an important book, and it is what led me to “One Two Three,” which we’ll get to, but first, let me introduce our second guest today. Dr. Andrea Huebner is a Mayo Clinic pediatric neuropsychologist and autism expert. Dr. Huebner has performed diagnostic evaluations for thousands of children with autism and is still fascinated by the uniqueness of each child’s autism experience.She’s involved in advocacy aimed at prompting communities to recognize the enormous potential contributions of individuals with autism and other developmental disabilities. Andrea, welcome to the show.
Dr. Andrea Huebner: Thanks, Denise. I’m glad to be here.
Dr. Denise Millstine: We’re going to dive more into how your work and Laurie’s intersects in this novel. Once again, our book today is “One Two Three.” Laurie, I knew you had a book out and I wanted to read it, but I was at this independent bookstore Scout & Morgan Books in the little town of Cambridge, Minnesota. As I often do I asked the bookseller for a recommendation for “Read. Talk. Grow.,” and she was looking at the shelves and she said, “Have you read this? It features a set of triplets, one of whom is on the autism spectrum, and another who has a physical disability.” I thought it would be perfect. I started it that very week. We invited you that very week and you said yes, and here we are. Thank you for agreeing to come on the show once again.
For our listeners who have not yet read the novel, “One Two Three” is set in a small town where a chemical company has contaminated the groundwater, resulting in many health issues, deaths and the decimation of that town’s economy and population. For most of our conversation, we’re going to focus on autism, but Laurie, can you tell us how you came to write a story about the fictional community of Bourne?
Laurie Frankel: It’s a really good question, and it’s usually a really hard one to answer about what inspires a book, as there are usually so many things. There are a lot of things, but in this case, the seed of it was really clear, which is that I read an article in the New York Times Magazine in January 2016 about a town in West Virginia, downstream from a chemical plant that had been polluting their water.
The article is actually about the lawyer who had been suing on behalf of the people in the town for 25 years and counting. That seemed really remarkable to me, and I could stop thinking about it. But when I started looking into it, what I found remarkable is the tenacity of the lawyer and the tenacity of the citizens.
But this fact of corporate pollution is, in fact, ubiquitous. Researching it took nothing more than opening up the newspaper every morning to find that this is happening everywhere, all over the country, all over the world and all the time. Because I was looking in newspapers and magazines and such, they’re reporting on current events, on things that are currently happening, they always talked to medical professionals, and those medical professionals always said: “Long term health effects.”
But because they’re reporting on something that happened this week, we’re not seeing what long term means, and that was the question that I kind of went into this with: What does this look like 15, 20 years on? What does long term health consequences mean?
Dr. Denise Millstine: It’s such an important topic and we could spend the rest of the episode talking about it, no doubt. But I really want to reemphasize what you just said, which is that this is fiction. This is a novel, but you have a really I’ve done a lot of background reading and reviewing to imagine what could happen in a very realistic way.
Let’s switch gears and talk about autism specifically. There are three main characters. They’re triplets. They are one, two and three. The middle triplet is Monday, and she is on the autism spectrum. Andrea, can you tell us a bit about your work in autism spectrum disorder?
Dr. Andrea Huebner: Sure. I am part of a diagnostic clinic at Mayo where we see kids all week long whose parents have a question of whether or not they might have autism spectrum disorder or another neurodevelopmental condition. We work as a team, so I’m definitely not the only person who weighs in on the opinion of diagnosis, but my piece of it is to do the testing portion. We have specific tests that are pretty darn good at predicting whether or not a child’s constellation of symptoms meets criteria for a diagnosis of autism.
Along with that, we also do a lot of testing to look at a child’s overall profile. What that means in the context of their IQ and their attention, their speech and language abilities, their fine and gross motor abilities, their problem solving.
We craft together a picture of a child’s overall functioning in order to inform our diagnosis. But really more importantly, to make suggestions to the family about what things they could do that might help the child to develop as best they can.
Dr. Denise Millstine: What you said is really important. In fact, Monday talks in the book about the different tracks in her school and some assumptions that are made about the children who have varying neurodiversity. In one of Monday’s early chapters, she says, “I sit between Lulu Isaacs, who is what other towns would call neurodivergent, but is not stupid, and Nellie Long, who is stupid.”
She is quirky and she’s fun, but throughout the book, Laurie, I think you go out of your way to make the point that many assumptions are made about people who have disabilities and their intellect or how smart they are. I think you’ve done that with great intention.
Laurie Frankel: One of the things that I knew going in was that I wanted these girls themselves to be on a bit of a spectrum because they navigate the world so differently from one another. They are very different from one another. Despite the fact that they are triplets. They share a great deal of genetics and they also share everything else as well.They overlap a great deal on the nature front as well as the nurture front, because they grow up in the same house, they’re raised by the same person, they have the same community, they go to the same school, they have been drinking the same water, and yet how that manifests is really different for each of them.
That was something I had decided before I started the book. What I hadn’t decided, but came to be true, is thinking about how life is in a town like this, and on this front in particular, the people in this town have been truly, truly wronged and abused, but on the other hand, there are lots of ways in which it’s a really good place for anyone to live and that it is very warm and supportive community.
Also in particular on this front, in that the way that they try to support their fairly unusual citizenry is with a good bit of universal design and a good bit of meeting the needs of the people who live there, which in some ways we should all be so lucky.
Dr. Denise Millstine: Yeah, I love how you add that element of “imagine if we all lived in a place where people of varying abilities could get around and find their voice and be given respect, even if their communication style is different.” Well, let’s talk about some common features of autism and we’ll see how they appear in Monday and then have Andrea give us some comments about how she sees these appear in her clinical practice.
So, Dr. Huebner, do you mind if we start with you and talk about some sort of typical communication variances that you would see in a child or a teenager who’s on the autism spectrum?
Dr. Andrea Huebner: One thing that’s really challenging when talking about autism in general is the idea of the spectrum and the fact that kids on the same spectrum, of course, can vary wildly. So, when we think about the range of something like communication skills, there are children with autism who don’t speak at all, who are completely nonverbal.
Sometimes the goal of treatment with those kids is to give them other means to be able to communicate, so we do things like sign language, or we encourage things like picture cards, or augmentative alternative communication, which are computer devices, similar to what Maribel uses in this book to communicate. The range of that is that you can also have children with autism who are extremely verbal and even gifted verbally.
We often see really strong vocabulary in these kids and they can answer questions really well, especially about things that they know well. They’ve got a lot of facts in their mind about World War II, or about train station schedules, and they can tell you all about it, but they also have limited flexibility in what they’re able to talk about.
Even though they know a lot about this one thing, they might have a really hard time answering a question like: “What do you think that kid is thinking? You know, when his ice cream cone fell on the ground?” Even though they’ve got 135 IQ, that might be really difficult for them to think about and surmise: “I don’t know. What is that person thinking?”
Dr. Denise Millstine: Laurie, you give Monday a very interesting communication style, which is quite literal. Tell us about that and also Monday’s approach to humor.
Laurie Frankel: Monday is funny. It’s really one of the best things about her, and I feel like it has nothing to do with me. She’s kind of funny aside from me. She makes me laugh as if she didn’t come out of my very own fingertips, which is rare. That’s a lovely gift when it happens in character development.
She indeed is very literal and enjoys a specificity of language that I share and applaud. For her, in many cases, it manifests as frustration with people who do not share that specificity of language. Her question is very much like, “You mean something. Why not just say what you mean instead of saying all of these things that you don’t mean and hoping that I understand what you mean anyway?”
One of the things that is true about Monday is, in part because of who she is and in part because of where she lives, she doesn’t really have a disability. She considers her inflexibility on things like language to be a strength, and I think we agree with her. Her question, “Why wouldn’t you just say what you mean?” is actually a really reasonable one, and it is one that allows her to navigate both her world and the world better than anybody.
It’s true that there are some parameters that exist for her that don’t for other people. One of the questions that I went into this book asking is how things like diagnosis, which is such a fraught issue in general and certainly in the autism community, but how that is different in a town where there’s only one doctor. How is it different if you don’t need an IEP in order to get an education? You don’t need a diagnosis in order to get your health insurance to allow you to get the services that you need. In a lot of ways, these things that Monday does differently from other people, in fact are her strengths, and that, of course, is true in our towns as well. No matter where we live.
Dr. Andrea Huebner: Laurie, I have to say, when I was reading the book, Monday’s my favorite character. I got a huge kick out of her, and I see a lot of kids like this, but one of the things I love about the work I do is that really and truly each of these kids are quite unique and Monday was no exception to that.
She has her little eccentricities that I just thought were really endearing and amusing. But I got to thinking too, about how wonderful it might be to live in a community where you could just say what you thought and you didn’t have to be so veiled or careful with what you were saying because people would give you that allowance if they knew you’re Monday and didn’t really have the ability to soften it or say it in a way that might be fully acceptable.
Another thing that I loved about her, which would just be so nice in real life, is that the girls have this truth or dare game throughout the book, and so if she hears something that she doesn’t think is valid or true, then she just calls it right there.
The concrete, literal way that she communicates is very apt for what we see in autism and yet, even though she was like that, she also shows that she has the ability, the wheels are always turning for her. She also has an ability to kind of put all of those pieces together, even though she’s so very logical, she’s also really careful about how she analyzes situations, and often she gets it just right. She gets it right her way.
Laurie Frankel: Thank you. Monday is my favorite too. That’s because her voice was so clear to me. And in part it’s because it is also so clear to me that her differences are strengths, not in some kind of “we’re bending over backwards to try to pretend that that’s that that’s true, and giving lip service to a thing,” but actually concretely, and I think both in her town and in mine and in anyone’s that these differences are, in fact, remarkable strengths, and so I admire her a great deal.
Dr. Denise Millstine: I think another, what can be common feature in autism is some of the sensory sensitivities. Can you talk a bit, Laurie, about Monday and her experience with others in terms of touch and how you wrote that into her character?
Laurie Frankel: Again, I feel the same thing. If we operate from a baseline that says, “You should want to be touched,” then kids who don’t want to be touched are all of a sudden a flag of some kind. This kid needs help. This kid is broken. Even more gently than that. Something’s not quite right, and we need to think about it and fix it and get some treatment.
If instead we approach it and say, “Why is it necessary that kids should want to be touched?” The fact that this kid does not want to be touched is fine. Let’s just not touch her.” Then all of a sudden we’ve solved that problem, not by getting that kid in treatment, and certainly not by pathologizing that child or labeling even that child, but just by saying: “What if we thought about things differently?”
This is because, again, this town is universally designed, this town is built to meet the needs of everyone, not because they’re enlightened and certainly not because they’re wealthy and have limitless resources, simply because their population looks different than other people’s populations, other towns’ populations, and has therefore grown up this way naturally.
That makes me think: “What are the things in my town that work for me, but aren’t working for everybody or making somebody else’s life difficult, and what are the things that could make that person’s life easier while not making my life worse or harder?” That list turns out to be really long.
Dr. Denise Millstine: But some of those features are things that just take intention and seeing the changes that need to be made and to your point, are not always this complete overhaul, turning the world upside down, but just being thoughtful about making the world an inclusive space. Andrea, will you talk about some of those sensory sensitivities that you see in your patients with autism?
Dr. Andrea Huebner: This is a really big topic for patients because it can cause a lot of struggles and stress. What is really interesting about, if we just call them sensory sensitivities, is that in the life of autism, it’s relatively recently that these things have been recognized as part of the diagnostic criteria. It wasn’t until the most recent DSM, the Diagnostic and Statistical Manual, was published in 2013 where this was even part of the criteria. Before that, parents would talk about their kids’ sensitivities.There may have been a little bit of a question about: “Is that a real thing? How could we really know? Why do they react so strongly? Maybe they just have behavior problems or maybe they’re just cranky.” It was really important that this was finally recognized at the diagnostic level because it’s part of almost every child I see that has autism. Not all kids will have these sensitivities, but the majority do, and they can cause really big problems in, for example, school.
Schools are loud, kids yell, the playground is chaotic, and there’s kids running everywhere. Things like even just sitting in the cafeteria to have lunch can be a really stressful experience for a child on the spectrum. Laurie, just speaking to your point about creating or building things in a way that works for kids, I think we’re trying and think schools are trying really hard to be flexible in how they create environments or at least what they expect kids to do.
Lots of classrooms now will have a quiet space in the back of the room that has cushy chairs or bean bags or something, and maybe it’s got some partitions or dividers where kids can go if they just feel overwhelmed or it’s too loud. Same thing with lunchtime. They are able to eat lunch in a different place other than the cafeteria, so that they don’t have to be subjected to that kind of environment that then kind of sets them up for having a rough day in general.
There’s noise sensitivity, but there’s visual sensitivities. Some kids are super sensitive to things like fluorescent lights and the humming and the really quick flickering that most people don’t even notice is really bothersome to them because their sensory systems are acutely or exquisitely kind of attuned to these things.
Also things like getting dressed in the morning. Sock seams. I can’t even tell you how many parents and meltdowns I’ve heard about with kids who complained that the seams aren’t straight or they’re on a part of their foot that feels really uncomfortable when they put their shoes on, so they don’t want to wear clothes, they don’t want to wear underwear. It’s too tight. Denim is too stiff. They can’t move.
I think the athletic sort of leisure companies are doing a swift business with dry fit fabrics and stretchy material that these kids can accept. Some of them will not wear denim at all. They won’t wear long sleeves, they won’t wear shorts. Part of that might be related to rigidity, like I just don’t like long sleeves and therefore I will not wear them, but a lot of it is also that sleeve feels weird.
If you don’t have autism and you put something on, even if it feels a little uncomfortable, you’ll probably get used to it within a few minutes. Your brain stops sending signals like: “Ooo, that’s itchy! That’s uncomfortable. That feels weird.” But kids with autism, we don’t know the exact mechanism, but it’s like they can’t switch that off. They can’t just get used to it, so it continues to be really bothersome. We just need some workarounds so that we don’t ask them to wear jeans, for example.
Laurie Frankel: Along those lines. One of the wonderful things that we’re seeing at the moment is that kids coming up today are used to thinking of differences as strengths, or at least as just different and not taking anything away from them or harming them in any way, so that if a kid has to go sit in the quiet space of a second grade classroom, or wear headphones, or whatever that accommodation is, that I think a generation ago we were really worried about that kid getting bullied or picked on or treated as really different.
Kids today are doing a beautiful job of saying: “Super! Great! How nice to have a quiet space in our classroom? How nice that you can put on headphones that have nothing to do with me? I’m not worried about that,” and so I think that we’re doing a really good job of thinking of wider ranges of normal.
Some of the solutions to these problems are fairly simple, like buying socks without seams, and then some of the solutions to these problems are that we don’t think of them as problems. It’s just not a problem to have to have a quiet space in the cafeteria, for kids who need a quieter space in the cafeteria, and so I feel like that’s really good news on all fronts.
Dr. Denise Millstine: In order for those changes to happen, though, people have to see them and realize and that’s where I think spending time with a character like Monday can help those who haven’t directly navigated autism. To understand some of these differences and to really be not critical, but to look at their space and see, can I do better?Can I change the lighting? Can I get a light bulb that doesn’t buzz even though it’s OK with me? Maybe it’s not OK with other people who come into this space. One thing you brought up, Andrea, in that last answer that I think is really important to highlight, is the overwhelm that can happen. Even right now it gives me a little bit of chest pain thinking about the scene in the book where Monday goes into the library.
For those who haven’t read the book, she has become the default librarian because the library is closed and now a family is living in the library. She goes into the library and she becomes very overwhelmed with being in a space that she considered to have one role that now has a very different role.
Laurie, tell us about that scene, and Andrea, tell us about when kids have these overwhelming reactions. How it’s dealt with in the book, but also how people can help in those situations.
Laurie Frankel: It’s a very important scene in the book because we see her overwhelmed and I think it comes from a place that we are not necessarily, as readers expecting, which is to say sometimes as Andrea’s example, in a crowded cafeteria, we would expect someone who’s easily overwhelmed by noise and sensory stuff to be overwhelmed someplace like that.
But in a library that is populated at this point by just this one family, just a few people sitting around having breakfast, is not a big deal. We think that’s not going to be a problem, but it is a problem. It’s a huge problem for her to negotiate, and she does react with very big emotions and in fact, has a panic attack and has to remove herself in that situation. Her sister has to remove her from the situation.
To my mind, the coda of that scene is when the other sister is talking about it with said family member later and she’s saying like: “Oh, this was so scary and that was such a big deal and you must be really uncomfortable having witnessed it and this must be really strange for you,” and he says: “What are you talking about? Of course I’ve seen this before.”
Because, again, as I say, kids these days, they all know people. They either are on the spectrum themselves or they know people who are. This behavior is often really alarming to parents and for good reason, and alarming to adults and for good reason.
They don’t want to minimize those reasons. The kids are very much like: “Oh, yeah, that happens. So, OK, great. You had a panic attack in my living room. OK, That’s OK. I’m sorry that you felt bad, but I am myself not wigged out about that,” and I think that both of those things are true and all of it’s really important.
Dr. Andrea Huebner: That was a really sweet moment when the character that you’re describing sort of took away some of the shame so that she didn’t have to feel bad or feel like she had to explain her sister. This is another difficulty for families who have kids that can be unpredictable and struggle in different environments. Sometimes it is hard to predict, as you say, like the library scene.
Perhaps a parent could have seen that coming if they knew how important the library was to Monday and how she had a very fixed idea in her mind about what the inside of the library did look like and should still look like and how it should function and what should happen in that building that was a treasured space for her. I hear all the time that families just kind of decide not to go out in public anymore. The idea of going out for dinner, for example, is just something that they don’t do because it can be difficult to manage their child. Whether it’s true or whether it’s just parents’ perception, it can be embarrassing if your kid has a fit and your kid looks typical.
There’s no obvious disability that anybody else can see. I absolutely believe it’s true that there are other people in that environment who would not be supportive of a screaming child who might be having a meltdown because of who knows what, and they might think that it’s just bad parenting or just a rotten kid.
Many families just decide they’re just not going to deal with it. It’s too stressful. There’s a loss there at many levels. One of them is that sometimes with some of these sensitivities, it’s like practice and exposure. If you can get your child used to going to a restaurant, and this is what happens when we go to a restaurant and you choose carefully and you’re not going to choose like the place that’s hopping on a Friday night, but relatively quiet and you choose a corner booth that’s, you know, away from traffic, for example, we can get children to learn to accept these environments because they kind of get used to it. We call it habituation.
If kids don’t get that practice, though, and families just decide, I’m just not going to do it, then they don’t benefit from that practice, and then those sensitivities can be reinforced so that they can even be stronger. So once we do decide we’re going to go out to a restaurant, it can be even more overwhelming than it would have been if we’d been taking those baby steps all along. Another common issue with kids on the spectrum is this emotional overreaction to stress.
A neurotypical child, who had something very special to her, be very different, could be really upset with that, but probably not express that in the way that Monday did in this book. It can be shocking to people that are around. You know, we could talk about what the kind of physiologic mechanism is behind that, but in lay people’s terms, or I think of it as, it’s just an overreaction to stress. They might go from 0 to 1000 very quickly.
It can be hard for parents to know what to do. We usually take a couple approaches when we are trying to address this. One is we try to be thoughtful about being able to predict and anticipate what situations might be hard. Your kid might not be ready to go to the NBA basketball game with the band and the team and the players.
It might just be a little too much. Maybe we decide we want to work up to that if that’s something that is important to the family, but we’re definitely not going to start there. One is just trying to head off obvious difficulties, but the other one is when we decide that this is important, we’re going to take it really slow.
For example, kids that have trouble going to the doctor, we might do a lot of practice and at first we just get in the car and we drive to the doctor’s office and we sit in the parking lot for 5 minutes and then we go back home. And then the next time we might get out of the car and we might go open the front door and then we go back home.
We take baby steps to it. In the middle of a meltdown if you’re already there and it’s already happened anybody who has kids can tell you that it can be really difficult to reason with a child in the middle of an outburst, autism or no autism, and so at that point, we’re really just doing damage control and trying to bring the kid back down.
Some kids will do OK with things like deep breathing, but often if you cue them to breathe in the moment, they don’t want to do it, so just trying to reduce fallout, try to get them away from the situation that’s bothering them. A lot of people rush around the kid with, “Are they OK?” touching them. That is not the thing to do. Give the child space, try to get people to be quiet or move them to a quiet space and then you can talk about it later.
Dr. Denise Millstine: Laurie, before we started this conversation, you said I’m not an autism expert, but we brought an autism expert, and I think that Monday has been really well depicted in so many ways. Some of which we didn’t even get to start talking about in terms of her obsessive interests. But listeners are going to have to read the book to find out more about that, because she is really a very enjoyable character.
I do want to switch gears briefly and talk about sister number three. So this is Mirabel. She has physical limitations, yet she is brilliant, but not always treated as such, even by her very thoughtful community. Mirabel could be the focus of an entire other episode, but I just really want you, Laurie, to talk a bit about Mirabel and writing this character who is so inspiring in so many ways.
Laurie Frankel: I hope that she is inspiring and she’s inspiring to me. How Monday puts this, back on those tracks that you were talking about at the beginning, is there’s the kids whose bodies and brains work like on TV is what she says. Then there are the kids like in her class, where their bodies work, like on TV, but their brains do not.
The reverse is also true. So, Mirabel is very smart. She is smarter than I am, which is certainly a trick in the writing process, but she does not speak with her own voice for the most part, and she uses a machine to talk and to speak out loud, and she only has the use of one hand.
Otherwise she has very limited use of her body. This itself is, of course, very, very limiting. Also what’s limiting, that it seems like it will be at the beginning, certainly was for me. When I went into it, I thought: “Gosh, she’s not going to be able to do anything.” Then, as I wrote, I thought that, “Actually, she can do an awful lot.” She navigates the world with a wheelchair. She is again living in a town where the streets and the shops and the sidewalks are built to be navigated by wheelchairs, which is not true where I live, and should be true where everyone lives, but it’s certainly true for her. And because of that, she certainly still has limitations, she certainly still has the ways in which her life and her options are circumscribed and ways in which she’s underestimated by the people around her — but on the other hand, they are used to, as an example, waiting for her to key in what it is that she wants to say out loud and waiting for the machine to speak that on her behalf.
There the town is used to her going out for the day and navigating that community via electric wheelchair, and so there are ways in which it is less limiting than I think she thinks, and I think it will be. For her I think really the journey of the book is in realizing that she gets a lot of care and support from her mother, but that that is not the only place the care and support can come from and that she can and will hire people to support her physical needs and at that point her world gets bigger.
I also want to say she’s a 16-year-old girl living in a small town, so of course her world is circumscribed. That is true for all of them. Frankly, I think most 16 year olds, wherever they are, and so one of the things that I think they all learn, and indeed the reader too over the course of this, is that some of your limits are particular to you, and certainly she has, but some of your limits are a function of being a teenager. As you get older, your horizons expand.
Dr. Denise Millstine: That was so powerful. Thank you for bringing us this character and this topic. Andrea, maybe as a point of wrapping up, we can really think about how assumptions are made about people with disabilities and how we could shift as a culture to see the potential in people who perhaps are different from what we have previously considered normal.
Dr. Andrea Huebner: I have to say that I feel like your book, Laurie, was put in my life at kind of a perfect time because I have been thinking a lot more about society in general and how we look at disabilities and how we account for them, accommodate them and include them. One of the things I’ve seen in my practice that I find to be very disheartening, because I’ve been doing this long enough, is that some of the kids that I diagnosed when they’re very young, they’re adults now, are reaching adulthood.
It’s sad to see that many of them don’t have a next step. They don’t really have a plan for what happens next because they don’t have a place like Bourne. There isn’t necessarily a college that is open to them that they could get to, to continue their education or learn a trade or whatever it is that their goal might be for adult living.
As a society we are just missing out on a ton of talent, untapped potential and really unique skill sets that I just have to believe have a place to fit somewhere. It’s on all of us to figure out a way to bring those individuals in. If they want to be brought in they can fulfill themselves personally and contribute to society and all of those things.
There’s a lot of young adults out there who have autism or other developmental disabilities who have a lot to give and who have skills and talents, but they don’t fit the mold. Even something like going to a job interview is a very difficult thing for someone on the spectrum because back and forth conversation is hard. Eye contact is hard. They might be uncomfortable interacting with someone across the table. They don’t like to be touched. They won’t shake anyone’s hand.
Even though these things might seem like they aren’t significant in a job interview setting, they really are. Because this is how a lot of us make our judgments about how well that person in front of us is going to fit in the role that we’re thinking of for them.
There are places where bigger corporations are doing more skill-based interviews. So instead of the question and answer thing, “Here’s a problem that you might face on the job if you worked here, how would you solve this?” Then let them show how they would approach that to see if they might be a good fit for that particular position.
The research shows that people who are employed doing something have more purpose in their lives and it contributes to improved mood and less anxiety and greater quality of life. Not to say that that’s the solution for everyone, but it’s been great for me to see that there are some places where people are being more thoughtful about it so that we can figure out how to bring these people into the fold better than we’ve done in the past.
Dr. Denise Millstine: I want to thank you both for coming on to “Read. Talk. Grow.,” for talking about autism and many other topics as well. I also want to express gratitude for the work you both do that is directly in autism and in fiction, but raising these health conditions so that people can have better understanding, empathy and hopefully our world can be an even better place. Thanks for being here with me.
Dr. Andrea Huebner: Thank you, Denise.
Laurie Frankel: This is great programming.
Dr. Denise Millstine: Thank you for joining us to talk books and health today on “Read. Talk. Grow.” To continue the conversation and send comments, visit the show notes or email us at readtalkgrow@mayo.edu
“Read. Talk. Grow.” is a production of Mayo Clinic Press. Our producer is Lisa Speckhard Pasque and our recording engineer is Rick Andresen.
The podcast is for informational purposes only and is not designed to replace the physician’s medical assessment in judgment. Information presented is not intended as medical advice. Please contact a healthcare professional for medical assistance with specific questions pertaining to your own health if needed. Keep reading everyone.
