S2E5: Transcript
Social Cognition in Autism with Dr. Sue Fletcher-Watson and Dr. Catherine Crompton
Tavia Gilbert: Welcome to Stories of Impact. I’m producer Tavia Gilbert, and in every episode of this podcast, journalist Richard Sergay and I bring you a conversation about the newest scientific research on human flourishing, and how those discoveries can be translated into practical tools.
In every episode of this season of the Stories of Impact podcast, we’re asking the questions: What are diverse intelligences and what do we learn by studying them?
And there’s a third question our diverse intelligences season also asks, and it’s the most central to today’s episode: When we identify diverse intelligences and learn from studying them, how can those revelations support human flourishing? Over the past several weeks, we’ve explored a diverse array of intelligences, from extraterrestrial to animal. But today’s conversation brings us closer to home, exploring social cognition found within our own species, and answering what the benefit to every person might be if we deepen our understanding of the wide variety of intelligences of human beings.
Today, we’re going to hear Richard Sergay’s conversations with researchers Dr. Sue Fletcher-Watson and Dr. Catherine Crompton, and we’ll also hear from Sonny, George, and Fiona — three participants in the doctors’ research — research that examines the social cognition of autism, shining new light on the comfort and confidence that autistic people can experience in communication and community with other neurodivergent people, and on how all people benefit when autistic people’s needs are supported.
Before we get to the research, let’s start with the very definition of autism itself, which is not as easy to pin down as you might imagine. Here’s senior research psychologist Sue Fletcher-Watson, Director of the Salvesen Mindroom Centre at the University of Edinburgh.
Sue Fletcher-Watson: It’s very hard to define autism. You can define it by the diagnostic criteria. And in that case it’s defined by what are considered to be deficits or impairments in social and communication behaviors and the presence of what are called restricted and repetitive behaviors. On the restricted and repetitive side, just such a range of things from physical behaviors, hand flaps and rocking for example, up to, you know, a really passionate interest. Those social and communication, uh, “deficits”—the research that we’re doing is sort of uncovering whether we think the word deficit is the appropriate word to use for those—but those social and communication differences run the gamut from people who don’t really speak at all and have very unusual ways of interacting with other people, and of expressing their emotions and their affection through to people who have long-term partners and friends and children and colleagues and fantastic relationships but still might find that their interactions are atypical in various ways.
Tavia Gilbert: And here’s Dr. Fletcher-Watson’s colleague, Dr. Catherine Crompton, Department of Psychiatry at the University of Edinburgh, and her definition of autism:
Catherine Crompton: Autism is a different way of perceiving the world and a different way of experiencing the world around you. So autism affects how a person perceives everything in the world around them in multiple different ways. This might be heightened sensory experiences, differences in how you perceive other people and how you interact with other people, differences in how your brain plans and manages activities. It’s a very, that’s a very difficult question.
Tavia Gilbert: Sonny, one of the people with autism who took part in the research, says this:
Sonny: There are lots of different definitions. The one I like to use is that it is a difference in perceiving and processing the world. Understanding it as a difference I think doesn’t mean that you don’t have difficulties. It takes in the diversity of human experience and the fact that humans process things in different ways all the time.
Tavia Gilbert: And Fiona, another participant with autism, offers her definition, which is revealing in how short and to the point it is:
Fiona: To me it is a way of processing information very differently. Autistic people don’t need fixing.
Tavia Gilbert: Is that different way of processing information something you inherit?
Sue Fletcher-Watson: We definitely know that autism is genetically mediated but it is not heritable exactly, so it runs in families but yet not in a predictable way. And that’s because the genetic contribution to autism is much more like the genetic contribution to height, for example. It’s not like you have a tall gene or a short gene. You have all sorts of different interacting genes that together combine to make you a taller or shorter person. There is not one things, there’s not one simple line that you can draw in the sand that says all the autistic people are on the left hand side of this line and all of the non-autistic people are on the right.
We’re not good at detecting autism in people who aren’t men and boys. It seems like autism is manifest quite differently in women and girls, and we’re also starting to recognize that lots of autistic people don’t identify in a simple kind of binary gender way. And so that adds an extra layer of complexity.
Probably the one thing that everyone in the autism field can agree on is that it is very complicated.
Tavia Gilbert: Many of us may have heard the term spectrum being used to relate the continuum of severity in an autistic individual. Are people with autism “on a spectrum”?
Sue Fletcher-Watson: So people talk about being at one end of the spectrum or the other end of the spectrum meaning people whose support needs seem to be very, very high versus people who seem to have less need for support. Really I think we should be talking about the autism constellation and we should be thinking about understanding and characterizing autistic people’s experiences in multi-dimensional space. We really need to think of autism, yeah, more as a constellation and that’s the term that we’re trying to use now.
Tavia Gilbert: So better language, better thinking than “spectrum” is “constellation,” but is it a constellation within a disease or a health disorder? Is it accurate to categorize autism as “ill health”?
Sue Fletcher-Watson: That is just a false dichotomy, right, between health and autism. Autism is a way of being in the world. It’s a way of processing and organizing that information and translating it into behavior. And if that’s different from the way it seems most people do it, that’s really interesting and it could be really important in terms of creating a world where people can thrive.
Tavia Gilbert: Is the word epidemic appropriate to use? Is there an epidemic of autism today?
Sue Fletcher-Watson: So a lot more people are diagnosed than used to be but certainly the word epidemic is not appropriate for a couple of reasons. One is the epidemic implies disease and also implies contagion. So it plays into various false narratives about autism, like the false connection that’s made between vaccines and autism, for example. These things have been really disproven in good quality epidemiological studies. But they still cause concerns. The other reason “epidemic” is wrong I think is because actually what we’re doing is, we probably have the same underlying rate of autism in the population, we’re just identifying it in a different way and in a more kind of inclusive way. So there probably aren’t more autistic people. It’s fairly simple to see that autism’s always been around. We just didn’t always have the words to describe it.
Tavia Gilbert: The different ideas about autism, the variety of language people use to make sense of it and to describe the way autistic people process information, get to the very heart of the innovative studies from Drs. Fletcher-Watson and Crompton.
Catherine Crompton: So what we have found is that autistic people have a different way of interacting with each other. The clinical diagnosis still is that autism is at its core something that causes real deficits in communication with other people and social interaction. Whether we’re looking at it as a deficit or a disability I think that’s a very central question to the research that we’re doing.
Tavia Gilbert: That research looks with curiosity and without criticism at the social cognition of autism. It’s not looking for a cure for autism.
Sue Fletcher-Watson: I mean, for me you can’t cure autism because it is not a disease. And the more we allow ourselves to be distracted by that pathway the slower we are going to get to the point where autistic people are just valued and accepted and understood and provided with whatever adjustments they might need to live the life they would like to live.
Tavia Gilbert: Though many autistic people — including research participants like George, Fiona, and Sonny — do thrive in aspects of their lives, no one would argue that the different way autistic people process information doesn’t present serious challenges. Here’s Fiona:
Fiona: It’s not denying that there are difficulties, there can be difficulties, and these can vary in severity of different people.
Tavia Gilbert: And depending on the degree of severity, it can be anxiety-invoking, or even disabling.
Sue Fletcher-Watson: More and more people are saying that we can simultaneously recognize autism as a difference and see it as having disabling effects, and the word disability is not a shameful word or something that we should deny. I’m really engaged with the concept called neurodiversity and the neurodiversity movement, which is essentially about pointing out to people that differences in how our brains work are a natural part of variation, just like ethnic differences or gender differences or physical differences of any kind.
Tavia Gilbert: Dr. Crompton adds:
Catherine Crompton: I think it’s important to understand that things can be a difference but still have disabling aspects to them. When I say that autism is a difference and not a disease, I mean that we need to work hard to try to understand more about autism to try and understand how to support people more and try to improve their lives. It doesn’t mean to minimize that there are of course disabling aspects of autism and that people can have a huge amount of difficulty in day-to-day lives for multiple different reasons and some of those reasons are systemic societal reasons, some of them are parts of autism that are always going to be positive autism that will be disabling for different reasons. We’re not looking to cure it. We’re not looking to eradicate autism at all. We just want to understand more about autistic people’s lives and how we can improve them.
And I think that this research can still go some way to alleviating some of the difficulties that people have. Neurodiversity isn’t saying people don’t have any difficulties. They’re not saying there aren’t disabling aspects to autism. It’s about saying we all have different brains. That’s fine. That’s okay. People see the world differently, even neurotypical people.
Tavia Gilbert: In order to learn more about autistic people — information that will help advance improvements in the quality of life for an autistic person — Dr. Crompton and Dr. Fletcher-Watson wanted to learn about how autistic people communicate, with each other and with non-autistic people.
Catherine Crompton: Neurodiversity is this idea that there isn’t one correct way of being or thinking or perceiving the world. And just because there is a majority of people who perceive the world in one way, it doesn’t mean that people with different neuro divergences are wrong or impaired in the way that they perceive it.
Sue Fletcher-Watson: Going in with an open mind, looking for differences in a way that isn’t presupposing a deficit, exploring the ways that autistic and non-autistic people are different without needing to default to the assumption that the autistic way is the inferior way of doing any particular thing…that’s really what our project has been all about: Essentially trying to discover whether there was a form of social intelligence that was unique to autistic people but also common to autistic people, and that would be actually a better way of engaging in a social interaction if that social interaction is with another autistic person.
Tavia Gilbert: So the two weren’t looking for a problem in autistic social interaction, as much as they were looking for what was working.
Catherine Crompton: This research came from a neurodiversity framework. So we weren’t framing the question as being: Autistic people have a deficit, what is the deficit? We were framing the question as: how do autistic people speak to each other? How do they interact with each other? What is that like? How does it relate to how non-autistic people interact with each other?
The focus of the study is to look at social intelligence in autism and whether autistic specific social skills can be facilitated in autism when interacting with another autistic person. So, are there pockets of social skills in autism? We were interested to find out whether there is a selective deficit in social cognition in autism and whether there are differences in how autistic people interact with other autistic people than to how they interact with non-autistic people.
Sue Fletcher-Watson: We decided to focus in on information transfer. So the way in which people transmit information to each other.
Catherine Crompton: We’re looking at how well people transfer information to each other within a social interaction. So are people sharing information? We’re also looking at how, how people experience that interaction, how it feels for them. So for that we use rapport measures. So we say how comfortable were you in that interaction?
Tavia Gilbert: In order to explore those questions — how well do you transfer information to another person and how comfortable were you in the interaction — the two doctors designed a variety of experiments for autistic people to perform with their autistic peers or with non-autistic people, using what Dr. Fletcher-Watson called a diffusion chain method. In practice, that meant eight people came in for a day, and the doctors would teach the first person in the chain a task. The first person in the chain would demonstrate it to the second, the second to the third, and so on, all to give the researchers data about the transmission of information. The transmission of information is a core challenge for autistic people, so the researchers were careful to not further complicate the tasks they wanted to study.
Catherine Crompton: It was also really important for us that we didn’t choose tasks that were selectively more difficult for autistic people. So we didn’t want to set our autistic group up to fail. So we didn’t want to do anything that would have a very strong sensory aspect to it or require fine motor skills or a lot of complex language. We wanted to look at the transfer of information, we didn’t want to make the task systematically more difficult for them.
Sue Fletcher-Watson: We wanted a kind of level playing-field because it is not about whether you find the task easy or hard, it’s about how effectively you can pass the information on to the next person.
Tavia Gilbert: What might the assumptions be about what the data would reveal?
Catherine Crompton: You would expect that if you had, say, two autistic people who both have very different difficulties in social communication, if you put them together the difficulties are going to compound on one another and make for a very difficult social interaction. And you might expect going down that line of thought that if you had an autistic person and a non-autistic person that perhaps that non-autistic person could scaffold the interaction and could support that interaction and would perhaps make that interaction more successful. And that’s not at all what we found, we found quite the opposite.
Sue Fletcher-Watson: Well we found exactly what we predicted, which is so exciting. And what we found is that autistic people will share information more effectively with each other than if you ask autistic and non-autistic people to share information with each other. An information transfer between autistic people is just as effective as information transfer between non-autistic people, and also if you ask people to rate what we’re calling rapport, so that the sense of comfort and ease that they have in that social interaction, you get higher rapport scores when you’re paired with someone who has the same kind of diagnostic status as you.
Catherine Crompton: Groups of autistic people and groups of non-autistic people share information as accurately as one another. When we have groups that alternate between autistic and non-autistic people we see a real decline in how much information they’re sharing throughout the chain. And the markers of rapport are equally high in our autistic and our non-autistic groups. But in the mixed groups they are significantly poorer.
Tavia Gilbert: It’s not just higher rates of information transfer that autistic people were shown to have with their autistic peers, but…pleasure in the interaction.
Catherine Crompton: We found selective deficits when interacting with non-autistic people, and when interacting with autistic people we found from multiple lines of evidence in our research that it works well, that there is something that supports these interactions with other autistic people that makes them successful and enjoyable and makes information transfer more accurate. What we’ve found is that autistic people have just as good interactions with other autistic people as non-autistic people do. And that the real difficulties come in when we have autistic people interacting with non-autistic people. So that’s when we have these difficulties in social interaction. And that goes against this idea of a universal deficit in social cognition in autism.
Tavia Gilbert: The reason for the difficulty in information transfer between mixed groups of autistic and non-autistic people? Dr. Fletcher-Watson names it even more succinctly.
Sue Fletcher-Watson: It comes down to a mismatch in terms of communication style.
Tavia Gilbert: One of the most powerful pieces of evidence supporting Dr. Fletcher-Watson’s statement, that the difficulty in communication between autistic and non-autistic people can be characterized as a mismatch? The response of independent observers to video footage of the research participants:
Sue Fletcher-Watson: So they don’t know the diagnostic status of the people that they’re looking at in these videos. And what we found is that when they’re watching a pair of neurotypical people or a pair of autistic people, that these independent observers, if you ask them is there someone autistic in this video they say no, there’s no autistic people here, even when two people are autistic in the video. But when they watch a video of an autistic and a non-autistic person having a chat together, they identify that someone there is autistic but they don’t know which one it is. Which is so interesting, because what those observers are detecting is exactly what our experiments have detected as well, which is a mismatch. It’s not about “your social skills are the wrong social skills, and my social skills are the right social skills,” it’s about these two people don’t match up.
Catherine Crompton: We have some data to really push that there is a difference and not necessarily a deficit which is really quite groundbreaking.
Tavia Gilbert: In difficult or unsuccessful interactions between an autistic person and a non-autistic person, the widely-held assumption is that the autistic person is being difficult, non-compliant. They are creating the difficulty, which would be solved if the autistic person would just “act normal.”
Catherine Crompton: In a difficult social interaction between an autistic person and a non-autistic person, most people would tend to put the blame, the onus, on the autistic person and say they don’t understand how to interact. The double empathy theory is taking that blame kind of away from the person and saying actually this non-autistic person doesn’t understand how to interact with this autistic person. It takes away the idea that there is a universal social deficit in autism and more focuses on the fact that when you have two people who think very differently from each other, whose brains are kind of wired very differently, they will have difficulties in interaction. The reason for this happening is coming from both people.
Tavia Gilbert: Here’s Sonny:
Sonny: We get told that we’re maybe not empathetic or we’re bad at theory of mind, we’re bad at reading other people. When actually we’re just in a sort of minority in terms of how we read people. In fact a lot of us have spent a lot of our lives trying to meet people halfway, and people don’t know to meet us halfway.
Fiona: More than halfway!
George: All the way!
Tavia Gilbert: This is the experience of many people with autism.
Catherine Crompton: A theme that’s come out quite strongly that I think is very interesting is that autistic people believe that they have a very good understanding of how non-autistic people work. So they say, I’m forced to live in this world that is run by non-autistic people and forced to learn how they interact and forced to behave in a way that will suit them and they don’t actually understand me, which is really interesting when you consider that kind of one of the themes of autism is kind of difficulty in understanding other people’s experiences. And you would think that non-autistic people would be much better at emphasizing, understanding what other people’s lives are like. And that’s certainly not what we’re getting from autistic people, they’re saying that it’s really the reverse.
Tavia Gilbert: Dr. Fletcher-Watson likens the difficulty of autistic people trying to communicate with non-autistic people this way:
Sue Fletcher-Watson: Say I’m an autistic person and I have a repertoire of nonverbal signals that I’m using and you’re not autistic and you have your own repertoire of signals that you’re using and my signals don’t match up with your signals, you’re just going to gather information from me less efficiently because it’s like I’m speaking a different language.
Tavia Gilbert: George agrees with this analogy, and with the importance of non-autistic people deepening their understanding:
George: I think it’s a cultural difference. I think language learning is a really useful sort of analogy. I see people like us who are kind of out there advocating for other autistic people as sort of translators between the two worlds. I think we need more people kind of bridging that divide.
Tavia Gilbert: Studying social cognition of autistic people reveals not just information about how autistic people communication, but how all people interact socially.
Catherine Crompton: Social cognition — it’s an umbrella term that includes psychological concepts that we believe underpin good, real world social interactions with other people. When we’re looking at measures of social cognition, they will include things like being able to read other people’s facial expressions and being able to understand tone of voice and sarcasm and being able to understand other people’s theory of mind: so the idea that other people have different thoughts and motivations and experiences to you. And so I think it’s really interesting that we’ve got this pattern of results that autistic people can interact very well with each other. And I think it raises really quite important questions for what we think about as social cognition, how we measure social cognition, and what autistic social cognition is.
Tavia Gilbert: How do people with autism feel about the doctors’ research?
Catherine Crompton: There’s been a really positive response to the research from the autistic community. We’ve had a lot of firsthand accounts from autistic people that have been telling us things like this for quite awhile. A lot of people have said, this solidifies my experiences, this resonates with what I’ve experienced with other autistic people. We’ve had a lot of people reach out to us and say how meaningful this research has been to them and how nice it is to see research that isn’t framed in a deficit framework and that is looking at showing that autistic people can interact just fine with other autistic people. You know, it’s nice to have some data to back it up.
Sue Fletcher-Watson: There’s a certain amount of people rolling their eyes in a kind of, we’ve been saying this for years and you’ve only just got round to “discovering it” in the lab. But I think mostly people feel pleased that we are uncovering these data that validate their subjective experience.
Catherine Crompton: So autistic people have said things like, you know, when I got my diagnosis and I met other autistic people I felt much more comfortable, I felt much more confident in speaking to them, and I really felt like I’d found my tribe.
Tavia Gilbert: George, one of the research participants, affirmed exactly that:
George: So when I’m with other autistic people I’m a lot more comfortable, I’m a lot more, it’s a lot more permitted to be my real self, so I can let my guard down, so I’m a lot less anxious.
Tavia Gilbert: Connections between autistic and non-autistic adults can be difficult to cultivate.
Sue Fletcher-Watson: Autistic adults might report finding non-autistic people quite hard to understand, quite hard to read, and they might find therefore kind of maintaining relationships with non-autistic people to be difficult.
Tavia Gilbert: Fiona offers her perspective about why there hasn’t been more of an effort to support understanding and successful communication and relationship between these diverse groups.
Fiona: Why would anyone want to meet an autistic person halfway when, whenever they read anything about autistic people, they find that they’re aggressive, that they’re rude, that they are selfish, that they just care about their own interests? And all these are false stereotypes that are harmful and stigmatizing.
Tavia Gilbert: And Sonny offers a perspective on the source of the stigma, or even fear, of someone with an an autistic difference:
Sonny: Oh, well…this unpredictability must mean threat.
Tavia Gilbert: Nothing about Richard’s conversation exemplified anything on Fiona or Sonny’s listing of autistic “character defects” — rudeness, selfishness, or threatening behavior. In fact, it revealed the great sense of humor these three have. You can hear it in their response, when Richard asks the group a deceptively simple question: “What’s normal?”
George: What’s normal? (LAUGHTER)
Tavia Gilbert: For all the judgment and misunderstanding about these three autistic people’s difficulty with communication, they’re laughing together. And we can understand that they’re baffled about what “normal” is, because the feeling that we’re not “normal” is one we can probably all identify with. We know that feeing is painful. It causes anxiety. And for someone with autism, that anxiety can be overwhelming.
Fiona: Pretty much I would say every autistic person has more anxiety. But it is wrong to just say well, that comes with autism, what do you expect? What’s been very interesting has been looking at the theories of why autistic people can be more anxious.
Sonny: It’s because we’ve been told again and again and again throughout our lives that, you’re doing this wrong, why are you doing it wrong? Why can’t you just be normal? Why are you behaving like that?
Fiona: Processing things in such a different way and the work we have to do to sort of filter out, we don’t filter priority information as well, everything comes in and we have to sift it in our mind. We don’t have so much capacity left to pick up all the social clues, to be able to predict what’s happening. Every person, regardless of neurology, needs to be able to have an element of prediction and control to feel relaxed. And when you haven’t got that, you’re aware of how much effort it can be in order to suddenly deal with a situation.
Tavia Gilbert: To deal with that sensory overload, like many autistic people, George learned coping skills, skills like:
George: Masking. Most autistic people spend an awful lot of time pretending to be not autistic because we have to, to survive in society. It means acting normal. Trying to be like other people and behave the way they do and look the way they do. So that people don’t call us out on our weirdness.
Tavia Gilbert: Dr. Crompton sees the research she and Dr. Fletcher-Watson are doing as helping find an answer to the stress and anxiety of having to rely on those coping skills to navigate daily life and communicate constantly in a different language:
Catherine Crompton: By building a world that is more accepting and more supportive of autistic people, we can hopefully minimize experiences like this and minimize hurt and pain that people are feeling and try to make a more inclusive and more tolerable world for autistic people to live in so that they’re not having experiences like this.
Tavia Gilbert: But until that world is built, autistic people must cope with the ramifications of the current world they live in:
George: I think anxiety is a very natural consequence of being autistic in a world that is not designed by or for us.
Sonny: Sometimes there’s a temptation amongst people to say oh, well anxiety is just part and parcel of being autistic. You can’t avoid it, there’s nothing you can do about it, you may as well just live with it. And that’s not empathizing with what it’s like to be part of a neurological minority.
Tavia Gilbert: And Dr. Fletcher-Watson links their work to the larger neurodiversity movement.
Sue Fletcher-Watson: Neurodiversity as a term was coined by an autistic academic, Judy Singer, recognizing that the disabling impact is about the interface between an individual and their environment. And so in that sense, neurodiversity is sort of intimately bound up with the disability rights movement which is a sort of subset of human rights.
Tavia Gilbert: Sonny makes this connection, as well.
Sonny: I like to challenge people to think about other minority groups that are not seen as part of the average in mainstream discourse. And I mean there had been a point in history and in some countries still where people who are gay would say, this is a terrible affliction. I wish people would change me. There are people of color who buy whitening medications that hurt them. There are people who do all kinds of things, because they feel like they have to change themselves because treatment by society and stigma and oppression has made their lives so unbearable. But we know that that’s not right. We know that they shouldn’t have to actually change themselves. We just need to accept them.
Fiona: To me that’s a societal shift that needs to happen, and that is one of we need to be more accepting of people who are different.
Tavia Gilbert: Fiona, George, and Sonny, and Dr. Crompton and Dr. Fletcher-Watson all recognize the importance of recognizing the needs of autistic people as part of a wider social justice issue. Dr. Fletcher-Watson puts it this way:
Sue Fletcher-Watson: I think our society quite profoundly and systemically discriminates against people with disabilities.
Tavia Gilbert: And that discrimination has profound impacts on individuals and families, often felt acutely when an autistic young person reaches the age society deems a mature adult.
Catherine Crompton: It’s definitely referred to in the UK, I don’t know if it’s referred to more broadly, as being a services cliff. So when people reach the age of 18, all of their services are gone. So while people might have really benefited from a special education or community mental health support teams, when they reach 18, that service is very much curbed.
Tavia Gilbert: It’s almost as though society pushes the person themselves off a cliff, creating what Dr. Crompton calls “a forgotten community.” The assumptions that people make about what they want or need and the decisions we make for autistic adults, can be deeply isolating and damaging. So this research into the social cognition of autism is intended to counter just those assumptions.
Catherine Crompton: Autism clinically is characterized by deficits and social interaction, so peer support is something that to date hasn’t really been used in autism because there is the assumption that autistic people don’t want peer support because they don’t want to talk to other people or can’t benefit from peer support because they can’t socially interact with people, they can empathize with the people, you know x, y and z reasons that autistic people wouldn’t benefit or wouldn’t want peer support. But I think that these findings really go against that and suggest that autistic people can really benefit from having these easy, relaxed conversations with one another.
Tavia Gilbert: Dr. Fletcher-Watson goes on to share the absurdity and even cruelty of our current expectations of autistic adults, insights that can help us think about all sorts of people with various intelligences and abilities, and she offers her thoughts with a warmth and humor that reflects that of the group of her three research participants.
Sue Fletcher-Watson: Virtually no one is independent, right? Like I live with a partner and two children and I rely on my partner to make various parts of my life run smoothly, and they fill in the gaps where I can’t do stuff. That’s what a lot of adult relationships are like, sort of symbiotic relationships. And yet for autistic people often it’s like we’re aiming for completely solo living as some sort of optimal outcome, right? Like, you’ve got to get out of your parents house and that means living alone in a flat and being entirely self-sufficient. It’s one of the kind of double standards that I think reveals our implicit ableism around autism. This is an expectation we never place on ourselves in the neurotypical majority, and yet we happily foist upon autistic people optimum outcome, right, is to live alone in a flat, just cooking your own tea every night.
Tavia Gilbert: So what is the answer?
Catherine Crompton: Not just increased “autism awareness” — we need understanding of autism, what autism is and the fact that it is not the same for any two people at all and that autistic people are as different to each other as anyone is. And willingness to learn and an openness to hear about what people need and what their experiences are, and what would work best for them.
Tavia Gilbert: We’re still a work in progress, to be sure, but we have evolved, somewhat, in other areas of inclusion in our society, so we have laid the groundwork for more just inclusion of autistic people, says Dr. Compton. Still, there is more work we need to do.
Catherine Crompton: We’re seeing education include different types of families and different types of experiences, different types of backgrounds. We’re not really seeing a huge amount of education about different types of brains and how people with different conditions experience the world. And I think that that’s really important to teach to kids early on while they’re, you know, very open to these ideas and very responsive to them.
Tavia Gilbert: Dr. Fletcher-Watson, too, reminds us that we’ve already practiced the sorts of shifts we need to make in our thinking and embrace of difference.
Sue Fletcher-Watson: If you go into an environment where there’s a very multicultural group who have grown up in different parts of the world, you’re really aware of that. You’re really aware that you can’t assume that everyone has the same background experience, that you can’t use kind of jargon or culturally specific references, and so you go the extra mile to adapt your communication to allow everyone to participate. And we could do more of that. In terms of our research, what we’ve been trying to do is integrate that sort of socio-political perspective into rigorous psychological research. So allowing that to infiltrate the questions that we ask, the way that we design our studies, the way that we deliver our research, and the way that we interpret what we’ve found and share that with the community.
Tavia Gilbert: Dr. Fletcher-Watson is not unaware of the potential for concerns from that very community about social cognition research like hers and the neurodiversity movement at large. She knows that there are those who fear the worst outcomes if the medical nature of autism and its most distressing symptoms are dismissed or ignored in favor of the benign perspective of autistm being simply an information processing difference or a mismatch in communication.
Sue Fletcher-Watson: I think that there are lots of people, especially family members of people who are autistic and have really high levels of support needs, you know, maybe they’re not speaking and they need a lot of support with their daily routines. I think they worry that the neurodiversity movement denies those support needs and that if it was taken to its conclusion it would mean that we weren’t providing proper understanding and support for those individuals. And of course actually, we all want the same thing, which is for autistic people to have happy, healthy lives.
The fact that we did our study with autistic adults who are articulate, independent, well-educated people, there will definitely be people in the autism community who feel that our results have limited relevance to, say, their child who needs a lot of support and wouldn’t be independently participating in a study like this. And so we do need to develop our work to make it relevant to those families. I think that it’s only by working together that we can really make a difference in people’s lives.
Tavia Gilbert: Dr. Crompton, too, offers caution in considering how to implement the results of their research:
Catherine Crompton: What we do not want to have at all is a ghettoization of autism and suggestions or ideas that autistic people should only talk to other autistic people. I think what is possible from this research is that we can try to learn more about what makes an interaction good for an autistic person. What will make interaction easier between autistic and non-autistic people? Because certainly a lot of the interventions that we have at the moment depend on autistic people trying to become more non-autistic. I would hope that this would help us better understand autistic interactions and how we can make communication better for everyone.
Sue Fletcher-Watson: And I’m really interested in what technology can do to facilitate communication across that kind of divide. And that goes beyond just autistic/non-autistic divide into other elements of human diversity. There’s all sorts of ways and scenarios in which it’s desirable for people from very different backgrounds or with very different neurological underpinnings to come together to work together. And it would be lovely to have some technological tools that could act almost like translators.
Tavia Gilbert: But until there are such translation tools available to us, we humans will have to rely on our own willingness to practice a new language, and perhaps discover the benefits of being multi-lingual.
Catherine Crompton: What we’re talking about in this study with neurodiverse social intelligence is that just because there is a majority way of interacting with other people, that doesn’t mean that it is the right way and the only way to interact with other people. And as we found autistic people are just as good at interacting with other autistic people. We should try to understand that a bit more and frame autism less as being a deficit and something that we need to make people work towards being less autistic.
Sue Fletcher-Watson: We celebrate difference because it enriches our lives. And diverse groups of people create more creative solutions and have more fun together. It’s tempting to just hang out with people who are similar to you. But actually you get better results, and personally and internally as well as externally, by working with people who are different.
Tavia Gilbert: For me, that’s what the research really brings home. It reveals how desperately we need to build more functional communities that support health and relationship. Can’t we do better than offering scant support to autistic people and their families only until the autistic person is 18, and then letting them fall off the cliff, leaving them to try to get by as best they can, often in isolation? Wouldn’t a society that was more curious, creative, and caring than that work better not only for autistic people, but for everyone? In fact, hasn’t every bit of social progress we’ve made relied not only on vision, courage, and persistence, but beautiful inclusion itself?
Next week, we’ll bring you more exploration of those beautiful diverse intelligences. We’ll be in conversation with Dr. Denise Herzing, Research Director of the Wild Dolphin Project and Affiliate Assistant Professor at Florida Atlantic University in biological sciences.
Denise Herzing: You know, I think curiosity seeks curiosity and intelligence seeks intelligence, and I just think there’s so much going on in there that if we want to understand it we have to figure out a way in, you know, whether that’s to our pets or the wild dolphins or whoever, I just think it’d be fantastic to have that tool to understand these other minds on the planet.
Tavia Gilbert: We look forward to bringing you more from that story next week. In the meantime, thanks for listening to today’s Story of Impact. We hope that you’re looking forward to hearing more. If you liked this episode, we’d be thankful if you would take a moment to subscribe, rate and review us wherever you get your podcasts, and if you’d share or recommend this podcast. Your support helps us reach new audiences. For more stories and videos, please visit storiesofimpact.org.
This has been the Stories of Impact podcast, with Richard Sergay and Tavia Gilbert. This episode written and produced by Talkbox and Tavia Gilbert. Assistant producer Katie Flood. Music by Aleksander Filipiak. Mix and master by Kayla Elrod. Executive Producer Michele Cobb.
The Stories of Impact podcast is generously supported by Templeton World Charity Foundation.