Stephen Kiesling sits down with November/December 2021 cover person, scientist, and neurodiversity advocate, Camilla Pang.
Camilla Pang is an accomplished scientist who studies the wildly chaotic lives of cancer cells. She also is an advocate for neurodiversity who manages her own autism, ADHD, and generalized anxiety disorder. An Outsider’s Guide to Humans is the culmination of a project that started when she was a child. It shares ideas from science to deal with extreme fear, anxiety, and life as an outsider.
KIESLING: Let’s start when you were eight years old and diagnosed with autism. That’s essentially when you started creating your manual for humans.
PANG: Well, yes. But I didn’t realize for a very long time that I was creating a manual—and certainly not one for anyone else. When you’re creating something to survive, you’re not looking toward an end product.
I was diagnosed with autism at eight, but all I knew was that I desperately needed something to structure my days and to leverage some understanding of the world. For me that was collecting piles of objects, trying to mimic what I was experiencing in the world with what I read in books and what I saw in my mind. To start, I had to make up my own language, and it didn’t look like a book. It looked like chaos in my bedroom and like tantrums.
Over time I started to narrate the things in my head through drawings on paper and objects that were ordered in a specific way. I needed to keep it all somewhere, and so, as I learned to write, I was like, okay, now I can put it all in this form. It took me awhile because I needed to draw a lot.
I’m a visual thinker. But when I put it down on paper, I felt an immediate sense of release. It felt great! So I carried on doing it. Over time it helped me understand and layer my different understanding of human behaviors beyond my family and the playground, so I kept working on it. But even when I was an adult I didn’t tell anyone about it. It was a bit of a guilty pleasure—something I was quite embarrassed about. Who creates a manual for humans when you are one?
And part of this manual came about through studying science.
I am a scientist. I tell people that and they say, “Okay, cool. That’s nice.” And I’m like, “You don’t get it, do you?” I want to shout my love for science from the trees and the rooftops. This book is my attempt to understand humans, and to teach some things to other humans who don’t understand humans through science. It’s also a love letter to science.
It’s a beautiful letter. When did you realize other people might want to read it?
Over time I realized that there was a need for it. For example, my sister would say, “Oh, I wish I could prioritize things like you do, Millie.” And I said, “Graph theory, of course.” And she gave me a blank stare, like what?
And then I thought, wait a minute, if someone who’s so well-respected by me and others doesn’t know something like graph theory, then that means I know something that other people don’t. People who are autistic like me presume that everyone knows more than we do, but over time I realized that no one knows what they’re doing—and that maybe I have something to offer.
One of the stories that really resonated for me was your description of the blinding fear that had you hiding under a desk.
Yeah. I have been so paralyzed by fear that I don’t know how to move or what to do or what to think or what to say. I don’t trust anything that I see or hear. I don’t trust my senses. And when that happens, I need to be under a desk or in a dark room to just zero my senses—to start fresh. That really soothes me.
A lot of people would say, “Oh, it’s a sign of suffering.” I’m like, “No, I just need to get out of here.” I just need some darkness for a bit—to be alone with nothing else but myself and the sound of my own breathing. And over time I realized that when you feel paralyzed by fear, it can often be from having to process too many different wavelengths in one go that it becomes blinding.
You write: “My anxiety attacks were like a beam of white sunlight, overpowering, impossible to look at directly, and something you can only turn (or run) away from. But within that sat a whole spectrum of emotions, some stronger and more immediate than others, all interplaying and tangling together to create fear.” Tell me more.
Yes. My mum had a crystal oyster duck shell on a window sill, and every morning when the bright sun shined, it refracted all these beautiful opalescent rainbows onto the ceiling. And I was like,“Oh, that’s beautiful.” And it felt so good. And I realized that I needed something that changed the blinding light of my fear into something that relaxed me. I needed a mental prism to be able to see the component wavelengths of my fear from red, yellow, to blue.
I took the prism very literally, and it works. I think I’ve got my autism to thank for that.
So, for you, hiding under a desk or putting yourself in a dark room is the same as being on a retreat. People, especially our audience, understand the need for retreats.
Yeah. I’m really glad that you brought that up because I went traveling with friends and they were like, oh, let’s go on a silent retreat. I said I would give it a go because you only live once. But I’ve got ADHD as well as being autistic and so the retreat was a weird mix of being understimulated by the loss of speech and at the same time being overstimulated by still having to process the interactions of others in a nonverbal way. So, the retreat had me literally shaking and going nuts.
But it was also quite interesting. When you are in a place where you have to be silent, to not use one of the main senses you use to communicate, it can be very peaceful. Time starts to slow down because you have to read between the lines of what people say, their expressions, their movements, their energy. And that helps you tune into your own energy. ... I do sense that, and it’s a very important aspect of communication that we often take for granted.
You learned to read movements and expression and energy early on.
I had to. I think many people doubt whether I’m autistic because I’m so good at reading other cues. People say, “Oh my God, you understand me so well. You can’t be autistic.” And I’m like, well, that’s your ignorance. I need facial expressions to interact. And I do rely on a lot of nonverbal cues as well to communicate.
You’ve learned to connect through cues that most neurotypical people don’t see or at least don’t concentrate on. And that means that your framework is different.
My framework is different. So basically, I’ve got like a weird intuition I pick up on. I’m not just interpreting the communication between me and another person, I pick up their energy. I create a context of how a person feels in an environment by detecting tiny movements that are in between what they say and do. You might say I mimic empathy so that I know how to interact with them and what to say and what not to say—and the result is that some people find my ability to read others uncanny. So I think you’re right. I’ve got a more intuitive approach to trying to decipher the context of someone when they walk into the room.
There are people who are labeled psychics, but my own sense is these people are differently sensitive. Exactly what you’re talking about. They can see things a mile away that other people miss.
Yes. If you have a dog, it’s sense of smell is a lot better than yours, but it sees less. So it’s literally tuning into something different. And I think when it comes to being sensitive, especially when you have autism, you have to teach yourself to really tune into the senses that are around you and what you’re sensitive to, because there’s so much that we miss. It’s a compensation mechanism. I didn’t quite get the social cues, but I knew how to read body language very well. I had to.
OUTSIDERS AND THE SCIENCE OF LARGE GROUPS
Every person who has ever been treated as an outsider has in some ways been typical: representative of a community that they may never even have met. It’s the smallness of our individual and social worlds that conceals this: persuading us we are seeing the entire system when in reality we only ever glimpse a tiny subset, drawing misleading conclusions as a result about average behavior and “normality.”
The essential point [of ergodic theory] is the important one to grasp: any large enough sample of people on a Tube carriage, crossing the road, or putting down towels on the beach will ultimately be indicative of the average behavior of people within the same system at another point in time.
Consider that and then think about the individuals who make up your sample. There will be people of all shapes and sizes, races and genders, neurotypical and neurodivergent, with and without mental and physical health conditions. This slice of average contains all of us—in our weird and wonderful diversity. You might call me crazy (plenty have), but I am as much a part of the indicative sample as you are. The whole system, moving in its consensus direction, contains all number of variances between individuals. Our differences remain strong and defining, even as we are essentially trying to do the same thing, and squeezing out divergent behaviors into an overall mean.
As demonstrations of human behavior, the crowd is doubly ironic. From a distance, we see a homogeneous bloc and tend to overlook the individuality that facilitates the whole. While up close, within the beat and noise of the crowd itself, we see only the individuals, and lose sight of the collective movement they create. The assumptions we make as a result can easily end up backwards—seeing differences as problems rather than a contributor, and assuming that consensus behavior should trump individuality, which in fact it depends upon it.
Learning about ergodicity helped me to see that the human obsession with stereotypes is one our more harmful traits. We rush to categorize people into distinct boxes to which we assign particular assumptions and expectations, often negative. And we then use those artificial categories to demonize people, emphasizing difference as a social and cultural weapon. Ergodic theory reminds us that there is a category, and we’re all in it: the human race.
Excerpted from An Outsiders Guide to Humans: What Science Taught Me About What We Do and Who We Are, by Camilla Pang, PhD. Published by Viking.
Have you always been able to speak as well as you do now? Or is this something you had to train yourself to do?
I’ve managed to train myself. Even when I was a midteenager—15 or 16–I would keep all the words in because I wouldn’t know how to make them come out, and I wouldn’t know how to construct the right words for the right feeling for the right person. And so, I mainly just kept it all in. But I did lots of other stuff like music and art and science, and I wrapped myself around books. I think a lot of people do that. So, I had to really train myself to speak as well as I do now. That skill is quite hard work some days.
You’ve publicly put on some major labels—autism, ADHD, generalized anxiety disorder. How each one actually manifests in a person is pretty vague. But how does it feel to take them on?
Labels are vague. I feel labels are very much like clothing. People take them off and on, and they sometimes fade in the wash. Labeling like that is just a way in which people can have some certainty over an uncertain process. I don’t think the label is representative of the whole person; however, it can be quite useful when it comes to managing in everyday life.
If you’re an adult and you’ve been struggling for a long time, and you’re trying to figure out how to survive, a label can be really helpful. When I learned I had ADHD, I was like, “Oh, that’s probably why I can’t sit down in the office and have a two-hour meeting or work in a chair from nine to five.” It means I don’t have to apologize for myself anymore because those things are clearly not going to happen. The label has given me more confidence. I don’t tell someone, “Hi, I’m Millie. I’m autistic.” But I might say, “Hi, I’m Millie. I really love eating Vietnamese, and by the way, please don’t smoke. That’s actually an autistic phobia.” It’s something that I bring up only when I need to—not something that I define myself as.
You write about going to university and going out clubbing—where you predictably had five anxiety attacks. You’re obviously willing to play your edges.
I am. It’s about that! I could easily not, but clearly there was something happening that I was missing out on. I love to experiment. I love to know what’s going on. I’m so curious.
You write that neurodiversity underpins human evolution and that evolution is driven by outliers.
Completely. You see that in cancer as well. The actual outliers—the subclones that are not popular—expand the genetic repertoire so that cancer is able to live in different parts of the body. That’s incredible, but it makes so much sense.
Think of speciation. We’re fish one day and then suddenly we’re land mammals, and then suddenly there are lots of different types of apes living in vastly different habitats.
In society, outliers aren’t tolerated because unlike in biology, there’s a conformist pressure to be the same.
In biology the benefits of outliers are completely clear. But in society, outliers aren’t tolerated because unlike in biology, there’s a conformist pressure to be the same, because civilization is something that isn’t based on chaos, but based on conformity.
You’re now a pioneer of neurodiversity. You’re on the front lines.
Well, maybe, I guess. [Laughs]
On the one hand you seem pretty fearless, and on the other you’re able to be completely open about what you’re afraid of.
When I write about the things I’m scared of, I’ve already gone over all of the negative possibilities in my head. I’ve already bullied myself in my mind enough to be like, “Well, if it’s out in the water now, there’s nothing worse that they can say about it.” In general, I think the best writing is writing the things that you’re afraid of, because if someone connects with it, then that’s a bit of genius. The best writing isn’t copying bits and books that have already been written. It’s beginning to articulate what hasn’t been said before—and having the bravery to give people that.
One thing I’m trying to do is break the disconnect between what traditional empathy looks like, which is warmth and hugs, versus someone actually making an effort so that they can attend to someone else’s needs as a human.
When my book came out, a lot of males messaged me saying, “Thank you for saying things that I didn’t want to say, that I’d been keeping inside. It made me feel seen.” And that, honestly, made me cry. The suicide rates of people are too high to begin with, especially in men. And it made me think about the whole social permission to express one’s feelings. And if you’re a man it’s a lot more difficult. People feel, but they just don’t want to share what they feel. It took the struggles of an autistic person to allow them to share.
You talk about turning a partner in a relationship into sort of a scientific project.
[Laughs] Well, I’m not going out with someone because they seem like a good subject to experiment on. It’s not a formal thing like that. Sometimes you need to separate yourself from your own emotions to be able to troubleshoot what someone needs: They’re clearly feeling something that they don’t express and they’re unhappy. It’s experimental because you’re trying to figure out what makes this person tick, and you have to be in a scientific mindset. But it’s not like I have a specimen. If I didn’t care, then I wouldn’t be doing it. The fact that I’m studying hard to make something work shows a lot more empathy than someone who doesn’t put in that sort of effort—even if that person can give great hugs.
So the relationship is based on real data … Effort, data. It’s really more like, okay, what can I learn from this so that I can know my partner better. And sometimes you need a bit of help, and you need to troubleshoot. It isn’t just unique to me. People do it all the time.
I’d like to highlight this because I’m a scientist and I’m autistic, and that doesn’t mean I don’t have empathy. Quite the opposite. One thing I’m trying to do is break the disconnect between what traditional empathy looks like, which is warmth and hugs, versus someone actually making an effort so that they can attend to someone else’s needs as a human.
In psychology, you’re often labeled one thing or another, but in biology you can be both. Immune cells and cancer cells demonstrate this all the time. When it comes to autism, it’s a very complex phenomenon. You can’t just say you’re this or that. So, I’d like to think that my book shows an element of empathy, which a lot of people with autism can’t show because they can’t speak—yet.