Transcript of journalist and senior media executive Richard Sergay's interview with Dr. Sue Fletcher-Watson & Dr. Catherine Crompton for  the "Stories of Impact" series.

Watch the video version of this interview

RS =  Richard Sergay (interviewer)
SFW = Dr. Sue Fletcher-Watson (interviewee)
CC = Dr. Catherine Crompton (interviewee)

 

SFW: My name is Sue Fletcher-Watson. I am a research psychologist. I am director of The Salvesen Mindroom Centre at the University of Edinburgh. 

RS: Define autism?

SFW: It's very hard to define autism. You can define it by the diagnostic criteria. So that is what is written in the diagnostic manuals that a psychiatrist or a pediatrician might use. 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. So those social and communication 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 and so on. Through to people who have you know long-term partners and friends and children and fantastic colleagues and fantastic relationships that still might find that their interactions are atypical in various ways. So perhaps friendships structured around particular interest for example, things like that. Lots of autistic adults might report finding non-autistic people quite hard to understand, quite hard to read in terms of what they're thinking and what they're, what they're feeling and what's motivating them. And they might find therefore kind of maintaining relationships with non-autistic people to be difficult. On the restricted and repetitive side, again just such a range of things that go from sort of physical behaviors, hand flaps and rocking for example, up to you know a really passionate interest in geology or or you know a radiator valve design. Yeah.

 

RS: Is autism and the way it's defined linear?

SFW: No. So we use the phrase the autism spectrum or the autistic spectrum, it was a phrase coined by Lorna Wing and she intended it I think to represent more than just a linear dimension. But unfortunately it's become used in a very linear way. 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 a sort of multi-dimensional space. So finding ways to chart where an individual's experience lies on sort of social communication measures but also sensory sensitivities, their IQ is not a feature of autism but an important co-variant in terms of understanding what their needs might be and that sort of thing. So we really need to think of autism yet more as a constellation and that's the term that we're trying to use now.

 

RS: How has the definition of autism changed over the years?

Well again the diagnostic criteria have changed essentially just becoming much, much broader. So that's probably one of the big drivers of what people think are increasing prevalence rates of autism but are actually really increasing rates of diagnosis, is just that the umbrella that contains autism has got a lot bigger. but I think it's also changing in the sense that we're starting to fundamentally question whether the word disorder is a valid word to describe autism. And then what that means. So for example there are increasing numbers of people who are choosing really to self identify as autistic and maybe don't feel the need to have that validated by a medical professional. And I really understand some of the reasons that might motivate that. If they feel that by definition getting a diagnosis from a medic is therefore endorsing this idea that autism is a disorder and a sort of unfortunate disease-like part of themselves. And if you reject that then you might also reject the entire kind of medical pathway of diagnosis. But it does present challenges because if people self-identify as autistic, for me as a researcher or for service providers, there are obvious questions over how we cater to that population. And there is a risk of people mis-identifying themselves in that way. 

 

RS: How would you diagnose autism at this point?

SFW: So the best practice is a multidisciplinary assessment in children that would involve an interview with the child's parents, meeting the child themselves, probably using some sort of structured observational assessment. So the one that is most commonly used is the Autism Diagnostic Observation Schedule known as the ADOS. You would also take some information from the child's teacher or nursery nurse depending on how old they are. And you'd ideally go and observe them in the classroom and the playground at school. So essentially it's a big information gathering exercise drawing on lots of different sources and trying to create a picture of the kind of behavioral profile of that child in order to understand whether an autism diagnosis is a good description of that pattern. In adults then obviously we're relying much more on the adult as the main informant and their parents may not be alive anymore. And so it's harder to get that kind of 360 degree picture.

 

RS: Because of the train in the sense of autism there is an understanding that there is an "epidemic" of autism, is that accurate?

SFW: So a lot more people are diagnosed than used to be but certainly the word epidemic is, 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. Or the concerns that some people have about autism and things like mercury in the air or something? You know, 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. And actually I think if most people over the age of say 40 cast their minds back to their youth, they will be able to think of a kid who was in their class or a kid who lived on their street growing up who probably would have fit the profile of autism but wouldn't have had a diagnosis back then. So I think it's, it's fairly simple to see that autism has always been around. We just didn't always have the words to describe it. 

 

RS: Scientific neurological biological understanding?

SFW: That's a hard-- you keep asking me hard questions. the biological basis of-- so, we definitely know that autism is genetically mediated but it is not heritable exactly in the sense that so for something like Fragile X Syndrome for example a parent will have a specific genetic marker that has a predictable relationship with the likelihood of their having a child with Fragile X syndrome. We don't have that predictable relationship in terms of autism 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 tall or shorter person. Neurobiologically, essentially, millions of pounds, dollars, euros, yen, have been spent on trying to understand or to search for categorical differences between an autistic and a non-autistic person's brain. And we just haven't found anything that's categorical and in that way it maps onto what we know about autism behaviorally and psychologically as well which is yes, there are all of these differences but there is not one thing. There is 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. So probably the one thing that everyone in the autism field can agree on is that it is very complicated.

 

RS: Difference, disorder, disease, disability?

SFW: Well definitely not disease. disorder is still in the manuals but I personally hope that we're probably going to move away from that. Disability and difference I would say yes, both. There are people who reject the terminology of disability and I understand why they do that. But I'd say 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 sort of deny. I am really engaged with the kind of 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 you know ethnic differences or gender differences or physical differences of any kind. And yes in some cases those natural differences can prevent-- can present sort of obstacles. So if you have dyslexia then your brain might struggle with reading or writing and be very good at other things perhaps more kind of creative tasks. And so in that sense dyslexia could be seen as having a disabling effect when it comes to trying to learn to read or write. But that doesn't mean that our goal should be to sort of eliminate dyslexia. It should be to understand how to create an environment where dyslexic people thrive and I would say the same about autism and ADHD and you know all sorts of particular aspects of neurodiversity.

 

RS: Are there common characteristics of autism or not? 

SFW: Yes. Yes. Absolutely. But I guess we're talking in general terms. So I would say it's about, it's like talking about the experience of being a woman or the concept of femininity. So you can define femininity in all sorts of ways. You could talk about people's clothing and people's personality traits and people's hairstyles and career choices and there will be women who are exceptions to any one of those examples that you pick out. So similarly in autism you can talk about differences in sort of social communication style, you can talk about the presence of really sort of passionate focused interests. You can talk about differences in sensory profiles, maybe being very sensitive to bright lights or particular kinds of noises or particular kinds of physical sensations, itchy clothing, things like that. And then you will find exceptions to every single one of those rules.

 

RS: This movement of neurodiverse intelligence?

SFW: So, neurodiversity is a concept, well neurodiversity is a term was coined by an autistic academic, Judy Singer, as a way to articulate the experiences that she and other autistic people were having which was essentially about trying to position autism as a disability in relation to the social model of disability, 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, of human rights, right. 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 found and share that with the community. And so that means going in with an open mind, looking for differences in a way that isn't presupposing a deficit. So 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. And that's really what our project has been all about. And we framed it in terms of essentially trying to discover whether there was a form of social intelligence or, or social style if you like 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.

 

RS: And what are you finding. 

SFW: Well we found exactly what we predicted which is so exciting. So what we found was that we decided to focus in on information transfer. So the way in which people transmit information to each other 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. And 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 you know that the sense of comfort and ease that they have in that social interaction, you get higher rapport scores when you have, when you're paired with someone who has the same kind of diagnostic status as you. So two neurotypical people will experience relatively high rapport, two autistic people will experience relatively high rapport and a pair of autistic and neurotypical people will have a little bit lower. Not dreadful you know, they don't break into a fight or anything, but it feels less easy, less comfortable interaction. 

 

RS: How do you account for that? 

SFW: Well there's a lot of explanations that we would like to go on to, to probe. One is that because of all the social signals that we use, so I move my hands around a lot when I talk, we use our facial expressions and the direction that we're looking in as a way to kind of mediate the message we're trying to send. So if I have, say I'm an autistic person and I have a repertoire of kind 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 in the non-verbal domain. Another possibility is that you, you and I again, I am autistic and you're not autistic, we do not feel a sort of emotional connection and so with slightly less motivated in that interaction. So we see that also in interactions between people from different ethnic groups and between people, in fact with children you can just organize them into a team and give one team green stickers and the other team yellow stickers. And then if you ask them to imitate each other they will imitate with less fidelity if they're imitating someone from the other team because they just don't care as much about matching what they're doing to what their partner is doing. So that's another possibility is that it's about the sort of affiliation that we feel. But we need to do some more clever studies to disentangle these possible explanations.

 

RS: The experiment you're running with autistic and non-autistic, does everyone know, have they self-identified within the group or is it a blind study? 

SFW: No. So we told them for this study what to expect. So we had a day where we would have eight autistic people came in and we told them you're coming in a group and everyone in the group will be autistic. And likewise if they were coming in on a mixed day where it was half and half and all the neurotypical group when they came in we would tell them. And the reason we did that is because we felt that we were already asking a lot of our participants. They were going to meet a lot of people. They were going to do some weird kind of tasks. And we just didn't want to also have any kind of deceit in the experiment. We wanted everyone to feel that they understood what was going on and they felt positive about it. But an obvious next thing to do and a really interesting next thing to do would be to not tell. We do have some data though-- so one of the, because we had these big groups of people coming in we thought we would try and do as much as we could with them during the day. [11:16:49.17] One of the things that we did was we paired people and just asked them to have a little chat, sort of informal conversation, introduce themselves and so on. And then we have videos of those chats that we've been showing those videos to other raters, autistic and non-autistic raters. And what we found is, and so they're then blind. 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 would also rate the rapport more highly. And if you ask them if there is 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 rate the rapport more like lower down the scale and 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 is not about your social skills or the wrong social skills and my social skills are the right social skills, it's about these two people that don't match up. They're not clicking. And that's really fascinating. And we are currently getting more video ratings so we can confirm that that person is retained with a bit more data.

 

RS: From your sense, one is not right and the other is wrong, just different.

SFW: They're just different. Absolutely. And that's exactly what independent people are detecting. You know. So I'm trying to think of a metaphor for it. Maybe it would be like watching a, a movie like a cartoon movie where you can see that two different people have different color skin but like one of them's green and one of them's yellow. You don't, you can't tell what race anyone is. You can't place any value judgment on it. You can see that there's a difference.

 

RS: The debate that's going on between the neurodiverse community. What were the other communities saying?

SFW: 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 and so on. 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 I think also just people, people are so passionate in advocating especially parents advocating for their children obviously, and they and they worry about their voices getting lost. There seem to be so many loud voices and of course actually all we all want the same thing which is for autistic people to have happy, healthy lives. But unfortunately we sometimes find ourselves in the position where it looks like we want opposite things.

 

RS: So one quote said autism is a living hell. I didn't want to be accepted for the way I am. I want to be cured just like a cancer patient wants to be free of disease. 

SFW: Well if I met that particular person I would just say how sorry I was that they felt that way. But I, I think as well if you rewound 50 years or possibly now in some parts of the world you could have a gay man going to the doctor and saying that about being gay. You know this is a living how I can't do anything I want to do. Can you cure me? I mean people did that. So I think we need to get to the point where people don't feel that way about themselves and where they can feel, well you don't have to feel proud of your identity but just comfortable with your identity and where everyone else feels comfortable with your identity. So, and I worry that the more investment and focus we put on cure, 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. 

 

RS: Viewing autism as a disease is harmful because some say they rather lean into it and not correct it. Is that fair?

SFW: Yes. Yes I don't know if I'd say lean into it, well, but yes I think so. I certainly wouldn't ever characterize autism as a disease. You'll find some researchers for example talking about an autism group in their study and a healthy group. And I think well were the autistic people not healthy, were they ill. You know, autistic people are healthy, right. Well some of them get ill, some of them get a cold or flu. But you know 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 the things that come into your body, the lights and the sounds and the touch and the smells and so on, and organizing that information and translating it into behavior. And 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. But I can't place a value judgment on that and say that something is worse just because it's in a minority, you know, it's yeah. It's like any other kind of disability. You know, this kind of idea, this biblical idea that someone in a wheelchair should be aiming to get up and walk, right. Just need to build ramps. And wider doorways and better toilets.

 

RS: The mantra in the neuro diverse community will be a difference not a disability? 

SFW: No, because I think it can be a disability and a difference, again like someone using a wheelchair, it's a difference and a disability. I'm not going to say that they are, that that's a worse way of being in the world, it's just a different way of being in the world. So I think difference and disability can be used at the same time. Obviously they are not saying they have exactly the same meaning but I would say it's a disability not a dis-- a disease and a difference not a disorder. 

 

RS: How does that effort and your work help educate the general population?

SFW: Well I hope that the data that we've uncovered during this study will add a much needed sort of independent empirical foundation to a campaign for better understanding that so far has mostly relied on autistic people themselves reporting their experiences and so on. So you know having published research data really lends weight to that campaign. I hope that we'll go on to explore how the findings that we've uncovered might be recapitulated in a group with say a learning disability as well as autism. And I think there are some really clear practical recommendations that we can make. So for example, if you're going to have a lot of autistic kids in a school, maybe it's a mainstream school that has an autism unit attached to the school. That's quite common in the UK. You should be thinking about employing some autistic teachers. That, that's a really nice simple practical consequence. I think that we could be drawing out and trying to persuade policymakers to take that on board and so on.

 

RS: You're trying to think about it not only as a difference but in a more positive light, that we all even neurotypical people see the world differently. 

SFW: Yes. Yes, absolutely. And definitely to see it in a more positive light or even actually just a more neutral light. So for me even when we're talking about intellectual disability, so you know, a real difficulty just learning new stuff and that with autism but obviously is just prevalent in the population generally. I don't think we should be valuing people because they have some sort of strength, some sort of quantifiable strength. You know, I just think we need to value human beings as human beings no matter what they bring to the world. And you know valuing someone more because they have some sort of talent or a high IQ or, or you know it's like valuing someone because they earn a lot of money, right. Yes that person has privileges and opportunities as a result of their ability to earn a lot of money and yes they may be very powerful and influential but they're no more valuable than someone who is working a minimum wage job. And I would say the same about IRS: And I would say the same about you know any of the dimensions of neurodiversity.

 

RS: There is I think a general sense that an adult autistic is forgotten whereas children are focused on?

SFW: Yeah, I think that is a problem internationally. I guess the education system normally takes you up to about 18. And so we have structures there for all children and then we can adapt them slightly for children who have some kind of additional support need. But the problem is we do not have structures for everyone. You know you're meant to find your own way in the world and make your own choices. You're becoming an adult. You're leaving home. You know you might do some further study but you know that's very much a kind of transition to total independence. And so we need to create structures post-18 that are only for people with disabilities. And rather than take a structure that we already have and just adapt it. And so that's more expensive. People are less motivated to do it. There isn't the same kind of infrastructure. So it's just one of the ways I think our society quite profoundly and systemically discriminates against people with disabilities.

 

RS: Your experiment is focusing on adults, why is that?

SFW: I think again it was about just minimizing the risk. You know what we were doing was so experimental in the sense of really quite new. We really weren't at all sure whether we would get just usable, high-quality data, let alone the patterns that we'd predicted. Working with children I mean you know people say never work with children and animals and I think that applies to research as well. It's just a higher risk. But now that we've established that we have a paradigm that works in adults then we could do that in children and actually the tasks that we design, so one of them is building a tower out of spaghetti and Play Doh. So we can just, we can do that with kids right off. 

 

RS: Describe the experiments?

SFW: So we use this diffusion chain method that means that eight people came in for a day and essentially would teach the first person in the chain something and they would demonstrate it to the next person in the chain and then person number two with demonstrate it to person number three and so on for eight people. So mostly you're looking for the skill to decline across the chain, so the first person is quite good at it and they forget a few details and you get kind of worse and worse performance. And so we're interested in how steeply that decline happens. And we found that in our mixed group you get a much steeper decline. So the loss of information is much more rapid for that mixed group. But in other places we're looking for some kind of increase. So in terms of building towers, so we-- we ran three different tasks down these chains. One of them was building a tower out of spaghetti and Play Doh. And actually what we're looking there is for the towers to get better and better because the first person is kind of experimenting with how to build a tower. Ideally the second person would learn a little bit from what they've observed and so they start at a slightly higher level and so on and so on. So you should see the towers getting taller but you should also see a kind of family resemblance. Like because your-- you're copying, or you're motivated to copy to some extent at least parts of the design of the person who went before you. But if you have a mixed chain of alternating autistic and non-autistic people in the group, maybe there will be less of that motivation to copy and so you might get towers that look really different from each other.

 

RS: Aha moments, surprises?

SFW: Well I remember at the beginning with Catherine drawing fake data on the whiteboard in my office which I often do at the start of a study imagining how we would plot the data and allowing ourselves to dream about the kind of perfect pattern. And then I remember after Catherine had analyzed the first three changes worth of data she brought it to me and it looked just like the fake data. I couldn't have been more thrilled. It was such an exciting moment. We couldn't really believe our luck. But that was only, we only had a third of the data in so we were terrified that we would, that it was just chance that we would lose that pattern. 

 

RS: What did the pattern reveal?

SFW: So the pattern revealed this steeper decline in the mixed group. So this was particularly in relation to the storytelling task. You tell someone a story and we count how many details they remember from the story. And as you go down the chain obviously people remember fewer and fewer details. But in the mixed chain it just plummets, you know, they just-- they lose all the information.

 

RS: And the mixed group being?

SFW: Alternating autistic, non-autistic, autistic, non-autistic. 

 

RS: Your theory about that?

SFW: Specifically in relation to the story, one possibility is that the non-autistic neurotypical people in the study actively chose to simplify the story because they knew they were paired with an autistic person. They brought their own perceptions and assumptions about autism and probably subconsciously you know they decided they would just keep it nice and simple and drop out some of the detail. But the other possibility is that this pair of people you know, one person telling the story and one person listening to the story, the person listening to the story was maybe distracted by you know this person is waving their hands around or expressing things on their face that are hard to interpret. This is stressful. It's taking up a lot of my brain power just trying to deal with this interaction. And so then there's just lim-- limited resource left over for actually remembering the story and that would work for whether the listener is an autistic person or a non-autistic person. Because again it comes down to a mismatch in terms of communication style.

 

RS: How did you choose the tasks?

SFW: Well, just a lot of conversations. We were trying really hard to find tasks that wouldn't systematically penalize the autistic people. So one of the tasks that we considered was doing an origami task that would be a nice skill to pass down the chain. But it involves a certain amount of fine motor skills and we know that some autistic people don't find fine motor control that easy. [11:36:01.04] And we didn't want to give them a task that would just be really difficult. We wanted to kind of level the 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. So we swapped out the origami idea for the Rubik's dog, which I think I'll show you later. 

 

RS: One of the takeaways I have is the feeling of being comfortable within my tribe. You want a mix that works. Am I correct?

SFW: Yes.

 

RS: Help me understand, as an autistic person there is success in communication within my tribe and clear success within the neurotypical community but not across it. How do you help solve that divide?

SFW: Well, so one thing I think is that we need to provide opportunities for both. So you're right. We don't want to put all the autistic people in a kind of ghetto and you know, fence them off from the neurotypical community. But I think we do want to create opportunities for autistic people to be together on their own terms especially perhaps in childhood and adolescence. And and that could be some much needed respite from the demands of spending most of your time in a neurotypical world.

 

RS: What does that look like?

SFW: You know after school clubs, buddy systems, increasingly now autistic people are setting up their own support networks and groups. Post-diagnostic peer support systems, that kind of thing. And there are some good models to follow. So we know for example in addiction services if you go to somewhere like AA or if you go into clinical addiction services one of the first things that will happen is that you're paired with someone, a former addict who can support you. Now I'm not saying autism is like addiction but there are clear models that we could replicate pairing newly diagnosed autistic people with someone who's established and comfortable in their diagnosis who could provide a unique kind of support that couldn't be provided by their, maybe their neurotypical family or by neurotypical practitioners and so on. So I think that respite would make operating in the neurotypical world much easier for a lot of autistic people. Just recognizing that we've got this fundamental difference would be a step in the right direction as well. So I think if you go into an environment where there's a very multicultural group who have come from different, 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, or references sort of 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 those environments where there's maybe one or two autistic people like in a lot of classrooms, a lot of mainstream classrooms. recognizing that and bringing people along with us would be a good step. 

 

RS: Are you comfortable with the current set of diagnostic tools that we have? 

SFW: I think we have some great tools but they do, it is very difficult to diagnose autism in adults who have a learning disability. There's probably a lot of adults now living in residential services who were identified 30, 40, 50, 60 years ago as having a learning disability and then any exploration of that just sort of stopped at that point. And now it would be difficult, we don't really have a toolkit for identifying whether any of those people also should have an autism diagnosis and whether they would benefit from that. I think it's quite hard to diagnose autism in adults especially adults who have seemed to have a successful life up to that point. But maybe under the surface have been struggling and are now kind of seeking an explanation for that. Maybe they've hit a crisis point, maybe there has been a shift in their routine like retirement or a divorce or a change of job and suddenly that's exposed the sort of fragility of their coping strategies. And we do not have good mechanisms for diagnosis there. And we're not good at detecting autism in people who aren't men and boys. So 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 in terms of understanding and supporting them.

 

RS: The implications of your study 

SFW: Well, so I'd like to see changes in educational practice and more conscious efforts to bring autistic people together when they're children and when they're teenagers. At the moment I think our buddy systems assume that the right thing to do is to pair an autistic person with a neuro typical student who can show them the right way to behave. And actually our study is indicating that that's not really the right way to go about it. I am also really interested, so another strand of research I'm involved in is about developing technology based supports. And I'm really interested in what technology can do to facilitate communication across that kind of divide.  And that goes beyond just the kind of autistic, non-autistic divide into other elements of human diversity. So 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 in those sorts of scenarios.

 

RS: Some examples would be?

SFW: Well a simple example would be just thinking about gender diversity in say a company boardroom, right. So we know that women are underrepresented in the boardrooms of major companies. But we also know that companies that do have women on their boards have high profits. so that's desirable. So a device in the room that would log who's in the room at a meeting and their agenda. And that would change color according to the gender of the person who's currently speaking and then provide some kind of weed out of the gender balance across that meeting. And it wouldn't tell you that you have to do something. It would act as a kind of visible reminder of these entrenched patterns that we've fallen into and how fully kind of lift people out of their patterns of interacting and working by giving them this kind of visible nudge that maybe they should be, you know facilitating everyone's contributions.

 

RS: Patterns or biases. 

SFW: Yes, both. Yeah, yeah. 

 

RS: What do you think others in the autism research community make of your work? 

SFW: Oh we haven't published it yet so we'll have to see. We've presented it at conferences and people love it. But equally those are the people who've chosen to come and hear us talk about it. I think there will be a lot of researchers that will be really challenged by this work. And for them we really need to replicate and extend it. We need to develop our findings into a program of research and hopefully soon enough we'll build up enough evidence that it's a sort of tidal wave of evidence. 

 

RS: The autism community itself?

SFW: Well again I think a lot of people love it. 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 around to you know, discovering it in the lab. But I think most people feel pleased that we are uncovering these data that validate their kind of subjective experience. But again you know you've-- you've mentioned so for example the fact that we did our study with autistic adults who are you know 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 well to test whether we see the same patterns in that, in that part of the community and to make it relevant to, to those families. 

 

RS: We celebrate difference.

SFW: We celebrate difference.

 

RS: Because?

SFW: We celebrate difference because it enriches our lives. And you know diverse groups of people create more creative solutions and have more fun together. I think. It's tempting to just hang out with people who are similar to you. But actually, you get better results and sort of personally and internally as well as externally by working with people who are different.

 

RS: As we peek to the future, what do you look forward to seeing?

SFW: I hope for, in the future I hope for more autistic leadership of research. I would like to see more autistic people succeeding in research careers that are contributing to autism research. I'm sure there are thousands of autistic academics busy focusing on their own discipline. I'd like to see participatory working with community members to be absolutely par for the course in autism research. And I'd like to see all members of the autism community come together around some shared visions. I think that it's only by working together that we can really make a difference in people's lives.

 

 

CC: I'm Dr. Catherine Crompton from the Department of Psychiatry at the University of Edinburgh.

RS: Autism - your definition?

CC: So, autism is a kind of 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 and in a kind of multiple different ways. And so this might be kind of heightened sensory experiences, differences in how you perceive other people and how you interact with other people, differences in how, how your brain plans and manages activities. Sorry. It's a very, very difficult question. 

 

RS: Has the definition changed over the years?

CC: Yes. So it used to be that autism with this kind of very rare condition diagnosed in childhood. That um-- that was kind of really related to kind of very slow language development and kind of real kind of intellectual disabilities alongside that. And as we've kind of progressed through the years we've, it's kind of also included those who have normal speech and have kind of normal language development too. And who have no intellectual disability. And it has now become a kind of spectrum, an umbrella of a kind of constellation of different symptoms that a person might experience and, and as it has done that we have this kind of what looks like an increased prevalence, it's actually you know partly due to this change in the diagnostic criteria and it becoming a wider collection of symptoms that a person may experience.

 

RS: Whether it's a difference, a diagnosis, a disorder, a disease or a disability?

CC: Well I think we'd certainly not say that autism is a disease at all. I might need you to gently remind me of what all of those D's were...

 

RS: Difference, diagnosis, disorder, disease or disability?

CC: Well it certainly is, it is a diagnosis of course we have people who do self diagnose and who self-identify and for whatever reason don't go through a diagnostic pathway to get a formal clinical diagnosis but do still self identify as autistic. In terms of whether we're looking at it as a deficit or a disability I think that's a very kind of central question to the research that we're doing. [09:04:02.24] So what we have found is that autistic people have a different way of interacting with each other. Now traditionally the clinical diagnosis has been and still is that autism is, at its core, a communication deficit, something that causes real deficits in communication with other people and social interaction. 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. When we have autistic people interacting with non-autistic people, that's when we have these difficulties in social interaction. And so I'd say from that regard we're looking at autism as being a difference and not as being a deficit. So not. Our results seem to indicate that you know there might not be this kind of deficit in social interaction but it is just a different way of being and that that can work perfectly well for autistic people.

 

RS: So are you inferring that autistic people communicate better with autistic people than non-autistic. 

CC: That's what our results would indicate. So we've looked at this question from a number of different angles and all of our results are converging on this idea that when autistic people are with other autistic people their social communication is as good as when non-autistic people are talking to other non-autistic people and that there is a selective difficulty when we have these kind of two different groups, these autistic people and these non-autistic people with, with one another. So yes, our results would indicate that when autistic people are together, their social communication is very good.

 

RS: Was there an aha moment for you? Did you expect that?

CC: Yes and no. So yes because autistic people, we've had a lot of first-hand accounts from autistic people that have been telling us things like this for quite awhile. 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. And so we've been hearing this modesty if you will for a while. And there's also a kind of theoretical framework called the double empathy-- double empathy theory that suggests that difficulties in autistic social interaction don't come from an autistic social deficit. They come from two people from very different backgrounds. So an autistic person and a non-autistic person who have different ways of thinking are going to have difficulties when it comes to them interacting together. So there's this theory, there's this kind of information that we're getting from the community that would kind of lead us to think okay well these results make sense. But if you think of autism from the psychological framework and from the clinical framework, it doesn't make sense at all and it's quite unexpected. So from the kind of clinical and psychological frameworks we know that autism is defined as being, as having difficulties in social interaction and social communication and also that autism is a very heterogeneous thing. So it can affect people in many, many different ways. So you would expect from that angle 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 kind of 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 kind of scaffold the interaction and could support that interaction and would perhaps make that interaction kind of more successful. And that's not at all what we found, we found quite the opposite. So in some regards, it makes sense but in some regards, it goes kind of quite against what some of the theories and, literature and practice is telling us. 

 

RS: It's a difference rather than a deficit?

CC: So, the diagnostic criteria for autism is deficit-based. So you have to have deficits in social communication, social interaction. And what we have found is that it is a difference that still works, so if it was a deficit we would expect autistic people to have difficulties in social communication, have poor social communication across the board, whoever they're interacting with, that's what we would expect from a pure deficit in social interaction. That is not what we found, we found selective deficits when interacting with non-autistic people and when interacting with autistic people we found from kind of multiple lines of evidence in our research that it works well, that there is something that supports these interactions with other autistic people and that makes them successful and enjoyable and makes information transfer more accurate. And that goes against this idea of a universal deficit in social cognition in autism because we're finding that that isn't consistent depending on the diagnostic status of who you're interacting with.

 

RS: Tell me about diagnosis. How does diagnosis work, when is it usually done, and what is the criteria. 

CC: So there's kind of no usual really in autism. And that's partly because autism is, is a fairly new diagnosis and also changes can-- it has changed quite a lot. So there are a lot of people who are diagnosed in childhood or in their adolescence. But we are seeing an increasing number of people who are diagnosed in adulthood too. So I mean you can get a diagnosis at absolutely any age for autism. So the diagnostic criteria are -- sorry. Diagnostic criteria so the diagnostic criteria include deficits in social communication, social imagination, and the impact on your day-to-day life. So it has to have a kind of functional aspect to the disability. Differences in sensory integration so sensory experiences, so that might be hypersensitive or hyposensitive reactions to stimuli. And oh my god... what am I thinking about diagnostic criteria, I know this has gone out of my head completely.

 

RS: How does the diagnostic criteria accommodate the spectrum of autism from those who are nonverbal and socially isolated to those who are more Asperger's-like and can compete in a "normal" world?

CC: So there's a couple of ways they accommodate this kind of wide spectrum of people with different experiences. So firstly it's the-- the diagnostic criteria have to meet you in a way that is what is termed functionally kind of functionally disabling. So it has to cause an impairment in your day-to-day life. So you know that, that is different for different people, different find different people find different things disabling or impairing to them. So that, that means that you know, it incorporates a wide spectrum of people. Also the new diagnostic criteria for autism that have come in have different levels. So there's autism level 1 to 4. So even though Asperger's isn't, isn't a diagnosis that's currently used, there is this understanding that you know there are different ways that autism can affect people and it doesn't have to look the same in people. And that's, you know there are these kinds of clusters of different criteria within the levels 1 to 4, so there's a couple of ways that it's, it can be kind of quite encompassing to different people.

 

RS: Your research seems to indicate that those within the autism community were communicating to like minded people who are also autistic, there is a sensibility and an innate understanding of communication. How do you accommodate for those who are on one end of the spectrum who are nonverbal or severely autistic. Does your research indicate that the need to have a better communication skill within the autistic community? 

CC: That's something that we haven't looked at specifically in this research. So one of the inclusion criteria that we had was that people who were participating had to have an IQ of more than 70. They had to be kind of within the normal range of IQ and the reason that we did that is because this is a very new, very experimental piece of research and we wanted to minimize the amount of noise in the data as far as we could. So we decided, we made the decision to only include people who were within that kind of normal range of, of IQ and didn't have a co-existing intellectual disability. So it would be very interesting to replicate this both in groups of autistic people who all have an intellectual disability and then also a kind of across autistic groups who do and do not also have an intellectual disability. We haven't done that yet. But autism is certainly considered as one condition even though it has multiple levels it's still considered to be you know it's the same condition across people. So we might hypothesize that we would see similar effects in autistic people who also have a learning disability but it's certainly something that we haven't answered in the research that we've done. 

 

RS: The Templeton funding for your work and experiment, the focus of it?

CC: So, the study that we're running is oh god, what are we doing-- the focus of it. The focus of the study is to look at social intelligence in autism and whether autistic specific social skills can be facilitated in, in autism when interacting with another autistic person. So are there kind of pockets of social skills in autism that we can understand and learn a bit more about. And do they indeed exist. So 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. And we also wanted to look at whether those interactions bear any relation to how non-autistic people interact with one another. So that was the focus of this study and we try to address that question using multiple different methods to get a larger picture of what's really going on in autistic social interaction.

 

RS: Define social skills?

CC: So when we're looking at social skills in this experiment we're kind of incorporating a few different things. Firstly we're looking at how well people transfer information to each other within a social interaction. So are people sharing information as well with one another. So that's quite an important measure. 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, why are you in that interaction. How was it for you. Without also doing a couple of other things to look at social skills. So firstly we're asking what we have asked, people to rate the videos for interaction or reports. They look at these videos of people interacting and they say how well they think they're getting on, how well they think they're contributing to the interaction. These people are blind to the diagnosis of the people in the videos. They don't know who is autistic and who isn't. [09:18:35.02] And we are also having expert coders, so psychologists rate the videos for markers of interaction or rapport and markers of interaction of synchrony. So we're looking at it from, from an objective scientific data-driven way in the information transfer from a personal experience way and the rapport measures. And then also from how it looks to an outsider, both kind of naive outsider and a psychologist. 

 

RS: And the hope would be in crunching this data is to find what?

CC: Well from the data analysis that we've done so far, it all kind of converges on this one theme that the deficit in social interaction-- for autistic people, and it's not just-- now I need to rephrase that because that didn't make sense. It's all converging on the idea that difficulties in social interactions for autistic people are specific to when they're interacting with neurotypical people with non-autistic people. That non-autistic people also find interacting with autistic people very difficult and that when autistic people are interacting with one another they do so just as well as non-autistic people when they're interacting with one another. So we find that in the information transfer, autistic people transfer information just as well as non-autistic people do when they're with similar people. Their rapport measures are just as high as when non-autistic people interact with one another. When people watch the videos they rate their rapport as being very high just as they do with non-autistic people. And we haven't yet got the data on the psychologist rating of the interaction or synchrony. But what we found in all of these measures is that, is-- we see this kind of specific drop in scores, this drop in rapport, this drop in data-transfer, information transfer. This, this drop in kind of external rated rapport, when we have autistic and non-autistic people together that's when there is this difficulty. And so for more the, for more of the analysis that we've done today it's all suggesting the same, the same kind of idea. 

 

RS: So your hope would be for real world applications if this data proves out that autistic people are communicating better within as you call it their own tribe? Non-autistic people are communicating better within their own tribe. But between them they're not. Does your experiment data help in the future to bridge the divide? 

CC: Yeah, I think, I think certainly. I think what we do not want to have at all is a kind of ghettoization of autism and having you know, making any kind of 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, we can try to learn more about what makes an interaction good for an autistic person. And we can look more at these autistic interactions and try to work out how it works, what will make interaction easier kind of 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. So trying to mask their symptoms, trying to learn social skills that no notice people use. And I kind of, I think that this kind of offers a new angle to think about how autistic people are interacting well and what can we learn from them and how can we then apply that to make communication better across people. But I think also it does highlight that things like autistic peer support might be really valuable for autistic people. So if there is this kind of inherent kind of, kind of comfortableness and kind of relaxed easy kind of interactions with other autistic people, it-- it would kind of follow from that then the peer support might be a really, really useful thing for autistic people, maybe even particularly post-diagnosis to meet other autistic people. And to have these interactions that are more easy and more natural and more free-flowing and like I mentioned earlier, 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 you know they can't socially interact with people, they can empathize with the people, you know x, y and zed reasons that autistic people wouldn't benefit or wouldn't want peer support. [09:23:32.29] 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 that can really be a benefit. 

 

RS: How do you define this term neuro-diverse intelligence? How recent a term is it?

CC: How recent a term is it? So-- neurodiversity isn't a particularly recent term, I think it's been around since the 90s and it's just 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 does not mean that people with different kinds of neuro divergences are wrong or impaired in the way that they perceive it. And so that would cover things within the neurodevelopmental family such as autism and ADHD and Tourette's and, and other conditions like that. So 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, it doesn't mean the way that they are doing it is wrong or different, it seems to be working just fine. And that we should kind of try to understand that a bit more and be, and try to frame autism less as being a deficit in something that we need to make people kind of work towards being less autistic and kind of understanding that there are correct ways to interact with other people that function fine in terms of how the interaction is working. And just trying to understand them a bit more and, and figuring out what we can know about them. 

 

RS: How far into the study are you?

CC: We have about three months left. We've been doing this for a year and nine months...

 

RS: You're going to publish?

CC: We're writing up papers at the moment and I'm just back from presenting this at the International Society for Autism Research which is a kind of very big annual autism conference. It's being presented at other various conferences in the next few months. Um-- yeah.

 

RS: Is viewing autism as a disease harmful?

CC: Yeah, and... I think it's important to understand that things can be a difference but still have disabling aspects to them. So when I say that autism is, is a difference and not a disease. I mean that, I think 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 have-- can have a huge amount of difficulty in day-to-day lives for multiple different reasons and some of those reasons are kind of systemic societal reasons and some of them are you know there are parts of autism that are always going to be positive autism that will be disabling for different reasons. You know, people can have gastrointestinal issues and cognitive issues, mental health issues, alongside autism that are very disabling and are very difficult but I think the main reason that we don't view autism as a disease is that we are not looking to cure it. We're not looking to eradicate autism at all. And we just want to kind of understand more about autistic people's lives and how we can improve them.

 

RS: The quote-- "Autism is a living hell. I don't want to be accepted for the way I am, I want-- I just want to be cured, like a cancer patient wants to be free of disease." What would you say to that person?

CC: Oh-- it's very, very difficult. Because you can't understand people's personal experiences and people are going to have incredibly different experiences. I think though, by building a world that is more accepting and more supportive of autistic people, we can hopefully minimize experiences like this and minimize the kind of hurt and pain that people like this are feeling and try to make a more inclusive and more tolerable, in terms of kind of sensory and social aspects, world for autistic people to live in so that they're not having experiences like this.

 

RS: Some of the experiments that you're running? Children included?

CC: It's all adults. 

 

RS: Age range?

CC: No, just 18 plus. So we have a kind of main core experiment that we've run which includes a diffusion chain methodology and what that means is a kind of controlled experimental version of the game telephone. So we have eight people come in to-- to do a research day, and we show the first person how to do something, a task or anything. And we, then we leave them with the second person and they have to show them how to do it. And the first person comes out in the third person goes in and then they have to show them how to do it. And it goes down to the eighth person. And so we've one mult-- multiple days with these groups of eight. And so we've used different tasks in the diffusion chain to try to tap different aspects of information transfer within these groups. Now the days that we've run the diffusion chains they've had three different conditions. So we've had groups of people who are autistic. We've had groups of people who are non-autistic and we've had groups of people that have had both autistic and non-autistic people in them and in those chains we have alternated between a non-autistic person and an autistic person in the chain. And that's so that we can look at how information is transferred within these different groups. So that's been the kind of core part of the study that we have, that we've done. the task that we've used, one task has been a storytelling task, so we just tell the first person a story then they have to share it down the diffusion chain. The second one that we've used is, we've used a Rubik's twist which is kind of like a Rubik's Cube but longer and you can make shapes out of it. So we taught the first person how to make a dog shape out of it and they then pass that skill down the chain so that's more looking at skill learning and the other thing that we did is we asked people to make a tower out of spaghetti and Plasticine. And what we're wanting to do with that is look at kind of cultural evolution and cultural learning, so do people who affiliate with each other more kind of copy each other more in terms of what they're, what they're building. So that's why we use those three different tasks. We've asked everyone who's come in to do those diffusion chain things and then we've also done three separate studies with different subgroups of our participants. So firstly our first group of people did paired interviews with each other, so we gave them a list of questions to ask each other and we put people in pairs again autistic, non-autistic, and kind of mixed autistic, non-autistic pairs. And they had a short conversation that we videotaped. And then the kind of second group of people that we had come in, they rated those videos for markers of interaction or rapport. And so what that means is that we have both autistic and non-autistic ratings of these pairs of people which is really interesting to look at. And our third group of people that we had to come in we did in-depth qualitative interviews with them about their experiences of spending time with other autistic people, of spending time with non-autistic people, and what that's been like for them. And so what that's allowed us to do is to kind of dig a little deeper into the experience to find out what it's really like for them, whether that's kind of changed across their lifespan, how that's been related to you know their life experiences and kind of whether there's really been any change in that too. So it's allowed us to kind of look at this question from multiple angles.

 

RS: Conclusions? What you're finding about information flow?

CC: So in terms of the diffusion chains that we've that we've looked at we found that groups of autistic people and groups of non-autistic people share information as accurately as one another. Um-- and 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. So that information transfer is kind of getting blocked. Kind of the points in the chain and the information transfer just isn't happening as well as it is in our other groups. We also looked at the markers of rapport. So we asked people after the diffusion chain, how did you get on, how comfortable was it, how awkward was it. And they mark them on scales out of 100 so it was quantitative data 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. In our video ratings we haven't looked at autistic and non-autistic separately at the moment because the sample size is fairly small. It's only 24. We're collecting more data at the moment on that. But what we found looking at all of our raters together, they rate autistic groups and neurotypical, sorry autistic pairs and non-autistic pairs equally high and they rate mixed pairs poorly as in terms of their interaction or rapport. And in terms of the qualitative interviews we have found, what are the key themes-- we have found similar themes but in more detail. So autistic people say that when they found other autistic people, when they found their tribe, everything kind of became much clearer, it was much easier, much more comfortable and there's less fatigue after spending time with other people. [09:35:49.11] There's a kind of unspoken understanding there that doesn't really exist when they are interacting with non-autistic people. So that when, when they're interacting with normal society what is much more difficult. It's much more tiring. And also that they-- they have 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. So they kind of fairly uniformly have said I understand non-autistic people better than non-autistic people understand me, which is really interesting when you consider that kind of one of the core, core 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 of that. 

 

RS: How are the neurotypical people responding to that question?

CC: So we're only doing the interviews with autistic people, we're not doing them with neurotypical people. 

 

RS: What are the barriers between the two different communities, what you're seeing.

CC: So I think that some of the kind of general barriers are coming just from a lack of understanding about what autism is and how it affects people and who it affects. So I think that although it is getting better and we do have a better kind of general public understanding of autism, and kind of how it can affect people, I think there still is this general kind of perception among, among some people that you know it only affects children, it only affects boys. It will present itself in certain ways. And I don't, I still don't think we've got a very good public understanding that it can affect adults and it can-- it can present very subtly and lots of women have it. I just don't think that there's a very good understanding of that. So I think that sometimes um-- because people have a poor understanding they make assumptions and those assumptions drive the way that they behave towards autistic people. And I think that genuinely non-autistic people think that they're being very helpful a lot of the time. I don't think that they're you know trying to be difficult and trying not to understand the experiences of autistic people. I think that with the limited information that they have, it's driving them to behave in a way that isn't perhaps suitable to the autistic person that they're spending time with or interacting with.

 

RS: Educational issues, technology issues. What will help bridge this divide in your mind? 

CC: I think it needs a kind of an attack from all angles really to try and really improve people's understanding of autism and various different neuro diversities as well. I think education is a really big one. I think we're seeing, we're seeing education in, in primary school, certainly in the UK. Include things of 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 experiences, different conditions experience the world. And I think that it's really important to teach to kids early on while they're very open to these ideas and very responsive to them. And so I think that education is a really big part of this. But also in terms of kind of lifelong educate-- lifelong education and kind of public health dissemination of knowledge about autism. And I think we're, we're seeing that that is happening and it will take time. But I think to kind of bridge that gap a bit more, that's really what we need. We just need increased under-- not just 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 the autistic people are as different to each other as anyone is. And just a kind of willingness to learn and an openness to, to hear about what, what people need and what their experiences are. And what would work best for them. 

 

RS: What is the current state of scientific, biological, neurological understanding of autism? Is it genetic?

CC: Oh god, this isn't the right question for me. Sue will be able to give you a better answer to this. It-- it's a fairly complex kind of polygenic thing. It's really, genetics really isn't my background at all. So Sue will be able to give you a much stronger answer on this than I can. But I mean certainly the understanding at the moment as far as I know is that there is a kind of complex polygenic basis for autism. But I mean the understanding of autism, what causes autism is still not, not really known.

 

RS: What motivated you to explore this topic? 

CC: Before I started here I did my doctorate which looked at collaborative learning in aging. And so what I was doing there was working with older adults with large samples to see whether learning with other people collaboratively led to better learning and memory outcomes than when you learn by yourself and whether kind of learning within a social context could be beneficial for older adults. And so I was kind of very interested in this kind of collaborative way of answering questions because I think so often as psychologists we look at how people perform individually on tests. We look at how people perform individually on memory tests, on social cognition tests. When actually in the real world that isn't what is happening the majority of the time. In the real world if you're learning new information you know if you're, in learning how to do anything, learning how to work anything, you're doing it with your partner, with your friend, with your son, you're doing it with someone else. We don't really do things in isolation. And I think that looking at answering questions within a collaborative framework is really important. And so I was particularly interested in that kind of thing. I'd also worked in a-- before I did my doctorate I worked in an autism outreach service, working with autistic adults kind of in the community doing various things for a few years. And so when this when, when Sue was kind of talking about this project it seemed like it would be a really perfect kind of fit for my background and also for my kind of research interests going forward too. [09:44:27.18] And so yeah it really kind of brought together that kind of collaborative way of looking at cognition within a kind of autistic community. 

 

RS: How do you think others in the autism research community will react or are reacting to your findings?

CC: So, so far we've had a, we've had a fairly positive reaction to, to these findings. We, over the last few years there have been not using this, this kind of paradigm or this framework, but other research that has kind of hinted towards, pointed towards this kind of double empathy problem in autism, in that autistic people when they interact with autistic people might have kind of better social interaction, better social cognition. 

 

RS: Define double empathy.

CC: So, the double empathy theory says that so basically says that, in a difficult social interaction between an autistic person and a non-autistic person, most people would tend to put the kind of blame the onus on that on the autistic person and say they don't understand how to interact with, with this other person. The double empathy theory is kind of 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. So the blame is not blame but you know the reason for this happening is coming from, from, from both people. And so it kind of more takes away the idea that there is a kind of 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 to each other, they will have difficulties in interaction because that's, that's the way that they are. And so that's what the double empathy theory kind of suggests is that you know there is this bi-directional difficulty in interaction and that it isn't solely the blame of the autistic person, it's not is not just due to their social deficits. 

 

RS: How is the autistic community responding to your research?

CC: There's been a really positive response from the autistic community to the research. A lot of people have said this kind of solidifies my experiences. This really kind of resonates with what I've experienced with other autistic people and it's you know it's nice to have some data to back it up which has been really nice. 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 is looking at showing that autistic people can interact just fine with other autistic people. [09:48:03.18] So we've had a lot of really kind of positive messages from the autistic community about the research. 

 

RS: While you're focused on adult, does this research have impact for children?

CC: Yeah, it does. So I-- you know autism is a lifelong condition. And while there are, while there are changes that will happen across the lifespan inherently it is the same, the same condition that people will have their whole lives. And so while this isn't-- while we haven't uh-- completed the research with children and know it would be very interesting to replicate the finding with children. I think we could hypothesize that we would find a similar effect. 

 

RS: Help me understand what the divide is in the autism research community. 

CC: How can I sum this up?

 

RS: Who would your critics be?

CC: So, I think there are some people who still kind of subscribe to the school of thought that autism is, it's a universal deficit in social cognition, and socially interacting and social behavior. And it would seem that a lot of the existing literature at first glance would suggest that. But when we look deeper and we look at the measures that have been used and the questions that have been asked and the way that they've been framed, it's not surprising that people have this perception of autism really. But, so yeah, I think the main critics would be people who are fairly kind of stuck in the framework that autism is, is a universal deficit in social, social understanding and communication. 

 

RS: Critics of neurodiversity who seeing it as a really benign neurological quirk denies the very medical nature of autism and the need for research into alleviating its most distressing symptoms. 

CC: I don't think that's true. I don't think that the concept of neurodiversity and the concept of the importance of research that will improve people's lives and alleviate difficulty are at odds with each other at all. I think that respecting people's differences, their kind of neurological differences, and understanding that people have different ways of thinking that aren't necessarily a deficit, is incredibly important. And I don't think that it does minimize the fact that we need to work together to improve people's lives so this research came from a neurodiversity framework. So we weren't framing the question as being you know autistic people are, have a deficit, what is 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. And I think that this research can still go some way to alleviating some of the difficulties that people have. So I think that they aren't at all at odds with one another as concepts. Despite at first glance they might seem that they are, neurodiversity isn't saying people don't have any difficulties. There's not saying there aren't disabling aspects to autism. It's about saying we all have different brains. That's fine. That's okay. 

 

RS: We all see the world differently.

CC: Yeah. 

 

RS: Even neurotypical people?

CC: Yeah, exactly. People see the world differently? Yeah, people see the world differently, even neurotypical people. 

 

RS: Describe for me how an autistic person sees the world. There's no one answer for that?

CC: Absolutely not. No. I mean autistic people are as different to each other as anyone is. There isn't an autistic way of experiencing the world per se, and it's very, very different for different people. 

 

RS: How do you describe social cognition? What's that phrasing mean for you? 

CC: Social cognition is-- it's an umbrella term that includes the kind of psychological concepts that we believe underpin good, real world social interactions with other people. So social cognition. 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. The idea that other people have different thoughts and motivations and experiences to you. So they are, they're all kind of psychological constructs that we can test using many different tests and we believe that they underpin social interactions with other people. Now these don't include current measures of autistic social communication. So at the moment when we look at the  literature and we look at the data when we ask autistic people to do these social cognition tests and we ask them to write facial expressions and rate you know, tone of voice and sarcasm detection and things like that, they-- they do perform more poorly than non-autistic people do. And so I think it's, 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 important questions for what we think about social cognition, how we measure social cognition, and what autistic social cognition is. 

 

RS: So looking toward the future of research like yours and others in this field, what do you hope for, what do you sit on down the road?

CC: I hope for replications of this work, certainly if the work that we've done and a kind of parallel studies in autistic people with learning difficulties, across autistic with and without learning difficulties, and also across other neurodevelopmental and psychiatric conditions. So I think that would-- that would be a really kind of important path to look at, to see whether this is specific to autism or whether we're finding similar patterns in, in other conditions. I think what is, what is very important as well is to try and translate this basic science finding into applied research that we can, you know try to figure out how this can work in the real world to improve people's lives and what kind of frameworks we can think about applying this to, to see, to see what the real world impact could be. So I think it would be really interesting to take these findings and translate them into things like post-diagnostic peer support models, school based peer support models, looking at autistic social support groups and figuring out kind of what the mechanisms behind them are and how they can work to-- to really support people in their day to day lives.

 

RS: Does technology play a role?

CC: Sue will be able to give you a much better answer on that than I can, that's much more her thing. 

 

RS: The neurotypical community needs in some ways as much if not more education about autism in the autistic community itself?

CC: I would. I would say so. Yeah. We need to, we need to know in general I think there needs to be a better standard of understanding of what autism is and how it, how autistic people understand the world and perceive the world and what their experiences are. I think that generally needs to be a much higher quality understanding within the general community. [09:57:57.01] And I think we need to be able to understand more about how autistic social interactions work and that could be beneficial within the general community. It could be incredibly beneficial to know autistic teachers and therapists and doctors, researchers, psychologists. I think that that could be something that specific groups could benefit from having a more in-depth knowledge of as well.

 

RS: I'm hearing more and more of the autistic community being mainstreamed into jobs and other activities that otherwise previously they may not have been?

CC: So do you mean the kind of being given opportunities to do what they want to do? What do you mean… I think that it's obviously incredibly important that people can do the job that they want to do most. And it shouldn't matter what their kind of narrow divergency may be. That of course doesn't mean that they won't necessarily need specific support within that, within that field, whatever it might be. And I think again it's something that's very, very important for employers to have a better understanding of autism, but also to have open channels of communication and the understanding that autism is very different for different people. And just because you know a little bit about it doesn't mean you know what's best for this person who's working with you and just being willing to understand where they're coming from, what their specific needs are, and to really try to accommodate them. Because very often they're not big things. And that can really make the difference between someone being able to stay and have positive well-being in their workplace or having a really negative experience that can really be quite, quite kind of difficult going forward as well to seek further employment if there is a difficult experience that could be kind of very easily managed within the workplace. So I think it's, it's great that people are being encouraged to do the jobs that are best for them but just because it may seem that someone is kind of very able and very competent at their job it doesn't mean that they don't also have needs that need to be met. 

 

RS: The sensibility that autism  is thought of to be diagnosed early usually in children. Adults tend to be a forgotten community --  what happens to these people when they grow up and become adults -- now what? Is that a fair assessment of the state of culture?

CC: I think so. I think there's definitely kind of, it's definitely referred to in the U.K. I don't know if it's referred to more broadly as being a services cliff. So when people reach the age of 18, that all of their services are kind of gone. So while people might have really benefited from a special education or kind of community mental health support teams, when they reach 18 that service is very much kind of curbed. And adult services are fairly few and far between. A lot are kind of in urban areas and those in poor rural areas can really struggle to get support. And certainly getting funding even for that for the adult services that are in urban areas can be very difficult to get and to maintain. And so yeah, I think there can be, I don't think anyone would really disagree that the kind of adult support for autism isn't perhaps where we would want it to be.

 

RS: Almost a forgotten community. 

CC: Yeah, almost a forgotten community. Yeah, definitely.

 

RS: What have we missed? Anything about your project? Experimental design you used, was it hard to put together, how did you go about selecting the tasks?

CC: So, when we were selecting the tasks, we had to think about a number of things. So firstly, we wanted to make sure that we had tasks that weren't too hard or weren't too easy. So basically we had groups of eight people and we wanted to make sure that we would see some difference in their performance within that group of eight. So we didn't want to make the task so hard that everyone would do really well. We want to make the task so hard that everyone would know to mess them up. But we wanted to make sure that we kind of got them at that sweet spot where people would find them of varying difficulty and that we would see some differences within our, within our groups too. We also wanted to make sure that within the diffusion chain we used tasks that would tap different types of information transfer. So there would be three tasks in the first. The first is the story task where people had to share some kind of verbal information with one another as people often do in conversations and at work and things like that. So that was the reason that we used that. We also wanted to look at skill information transfer which is why we used the Rubik's twist task. And we wanted to look at cultural information transfer which is why we use the tower building tasks. So we wanted to make sure that we were looking at different aspects of information transfer within the one task. And I think 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 make sure that anything that might be particularly difficult for autistic people wasn't included because we didn't want them to be. We wanted to look at the transfer of information, we didn't want to make the task systematically more difficult for them. So it took a little while to get the tasks that we used but I think the ones that we used have worked really well for the questions that we're asking. 

 

RS: Sum it up, takeaway and looking to the future, lessons learned?

CC: So I think the main takeaway is that we need to rethink what we mean by social deficits in autism. Because we have found that it is a selective deficit that occurs when interacting with non-autistic people and that's a really important finding that goes against some of the existing literature. But more importantly, just answers a question that the existing literature hasn't addressed. And so that has been our main finding with multiple lines of data kind of feeding into that outcome. In terms of where we, where we go from this, I think obviously replications are important and we want to think about replicating this in different types of groups. But I think the most important takeaway is that we can, we have some data to really kind of push that there is a difference and not necessarily a deficit which is really quite-- really quite groundbreaking when we think about autism and social interaction. And, I would hope that this would help us drive towards more support for autistic-led organizations, support for more autistic-led, autistic peer support. autistic led education in schools about what autism is. And just to kind of better understanding of autistic interactions and how we can make communication better for everyone. Thank you very much.