Tuesday, May 28, 2019

The Problem With Autistic Communication Is Non-Autistic People: A Conversation With Dr. Catherine Crompton

Dr. Catherine Crompton is doing ground-breaking research on autistic social dynamics and communication, so we were thrilled to interview Dr. Crompton about her work on Information Transfer between Autistic and Neurotypical People during INSAR 2019. We were fascinated (and gratified) to learn about her findings that when there are communication disconnects between the two groups, it tends to be a mutual hiccup rather than an autistic-specific problem.

Shannon Rosa of Thinking Person's Guide to Autism (TPGA): I’m speaking with Dr. Catherine Crompton from the University of Edinburgh. Catherine is working on a project that examines whether performance on cultural transmission tasks varies, depending on the diagnostic status of the social partner, which basically, if you want to summarize that in layman’s terms?

Dr. Crompton: It means that we’re looking at how autistic people interact with other people, whether that is different, depending on whether the person they’re interacting with is also autistic or whether they’re neurotypical.

TPGA: Thanks so much. So can you please tell us a little bit about yourself, about your background and your affiliations?


Shannon Rosa and Dr. Catherine Crompton at INSAR 2019
[image: Two white women posing together, one with red chin-
length hair and glasses, the other with long brown hair and bangs.]

Dr. Crompton: Sure, currently I’m a postdoctoral researcher at the Patrick Wild Centre at the University of Edinburgh and before that I did my undergraduate degree in psychology. Before that, I worked at an outreach service for autistic adults that did a lot of community-based stuff with people who were doing lots of different things, and who wanted support for various different bits and bobs in their life. I did that for a few years and then I went and did my Ph.D in aging. My Ph.D wasn’t in autism, but now I’ve come back to doing autism stuff in the project that I’m doing now.

TPGA: Why did you choose to study the efficiency of how autistic and non-autistic people exchange information?

Dr. Crompton: There are two reasons why this project came about. Firstly, we’ve had a huge amount of first-person accounts and anecdotal evidence that autistic people can find spending time with other autistic people more comfortable and easier and less stressful, and just easier than interacting with non-autistic people. We’ve heard a lot from people who have said, “once I found more autistic people I thought I had found my community” and this kind of stuff. And we didn’t have any empirical evidence to back that at all.

We’ve got a theoretical framework within the double empathy problem which kind of says a similar thing, in that the problems of interacting and interactions between autistic and neurotypical people isn’t necessarily all down to a deficit on the part of the autistic person. It’s more to do with a mismatch in communication style, and mismatch in background.

There is now a growing body of evidence that’s looking at double empathy problem matters, but when we started this project we were really keen to try to address these two areas in an empirical and data-driven way, to see whether this is something that we could explore scientifically in a controlled fashion. We were really interested to see if our theories would stand up to empirical tests.

TPGA: Got it. Can you please tell us about your research sample. What were your selection criteria and why?

Dr. Crompton: For everyone that was involved, we asked that they were over 18 years of age. We didn’t put an older age limit on it because we didn’t want to be overly restrictive. There was no reason for us to be, so we just asked that everyone was over 18; and within our autistic group we said that people could either be clinically diagnosed or self-identified as being autistic. We didn’t want to exclude anyone from taking part who felt that they were part of the autistic community, and had that lived experience. We did use measures with everyone who came in. So even if people were self-diagnosed we asked them to do a couple of screening measures, made sure that they were within the area that we would expect them to be.

We matched our groups on age and gender and IQ and years of education, and things like that. So all the factors we might expect to have potentially an effect on sharing information, or on learning a new task, we just made sure our groups were matched on those things. We also made sure that all our participants were native English speakers, or spoke English to a native-level.

The only other thing that we used as an exclusion criteria is social anxiety disorder. I think it would have been fairly self-selecting anyway, in that we were very up front with people and we said, “if you’re coming in, we’re going to ask you to talk to people that you don’t know. There’s going to be other people there.” So I doubt that we necessarily would have really got a lot of people with social anxiety coming forward, but we just said, just for the purpose, because this is a first and very exploratory we just wanted to try to make things as easy as possible to analyze. So we just said, “sorry, but we can’t take anyone with social anxiety disorder.”

TPGA: What were the primary findings and implications of your study?

Dr. Crompton: The study’s got a few different arms and legs, but the main body of the study is using a diffusion chain, which is like a scientific version of the game "Telephone." So the researcher will tell someone a story or show them how to do a new thing or teach them a new skill, and then that person has to teach the next person, that person has to teach the next person, and so on. We did this in groups of eight; and we had groups where everyone was autistic and groups where everyone was non-autistic and groups that alternated between neurotypical and autistic people.

We did three tasks across multiple groups and we found that when autistic people are sharing information they do so with a similar accuracy to neurotypical people. But when you have groups of people who alternate information sharing between being an autistic person and a neurotypical person, we see that the amount of information that’s shared, the amount of data that’s transferred within these groups, really drops off significantly.

It’s when you’ve got this mismatch of neurotypes that you’re really seeing a problem in the communication—we’re not seeing that within our autistic-only groups. So that’s what we’re presenting here at INSAR. We did add extra little arms and legs on it, so we also looked at how people rated their own experience of the interaction. We wanted to know what it felt like for them. And so we found that the autistic people felt much more comfortable when interacting with other autistic people. There was much higher rapport when they were talking to other autistic people.

I should say, these are people that have never met before. Everyone was strangers. But they felt much more comfortable and much happier when they were talking to autistic people at a comparable level than with non-autistic people talking to non-autistic people. And, again, when it’s mixed groups of autistic and non-autistic people, the rapport is much lower than we get when it’s just an autistic group or just a neurotypical group.

We’re also having those videos coded for markers of interactional rapport as well. So we’re having the subjective, “what was the experience like for you?” question and we’re also having a master’s student, Becca Stewart, who is coding the videos for objective markers of rapport.

We’ve also done a qualitative arm where we did interviews with autistic people about their experiences of spending time with other autistic people, what that was like for them, and how it compares to when they spend time with non-autistic people. So we’ve got a really nice, complementary set of findings.

TPGA: Were there any findings that surprised you?

Dr. Crompton: I was surprised with the diffusion chain findings where we found that the mixed group didn’t do so well. It was surprising that we found the effect to be as strong as we did. You would hypothesize, based on the literature and the clinical diagnostic criteria of autism, that you would have your neurotypical group doing fine and well and they’re all great, and maybe when you’ve got an autistic person and a neurotypical person that the neurotypical person has wonderful social skills so they’ll maybe be able to scaffold that relationship and scaffold the information transfer so they’d maybe come second, they’d do okay. And that if you had a group of all autistic people that everything’s just going to fall apart. That’s what you would hypothesize—if you’d just read the literature and the clinical diagnostic criteria. The fact that we found in such a strong statistically significant way what we did was really lovely and really great. It was surprising that we found it in such a strong effect, but very lovely to find.

TPGA: Yes, please blow apart those autism stereotypes! So what could have gone wrong?

Dr. Crompton: Oh my god, everything!

[both laugh.]

Dr. Crompton: What could have gone wrong… loads of things could have gone wrong. It was a difficult study to run logistically. Not really in terms of hard-brain science, just logistics and admin. We had to match all of our groups on age and gender, and we had to get people to come in, in groups of eight. A lot of people traveled a really long way. And we had to say to people, “you’re going to come in to this horrible, not very nice building, in Edinburgh that you’ve never been to before, and talk to people that you’ve never met before, and do a task that I can’t tell you what it is right now, but you’ll see it when you get here and you’re going to be here for a few hours.”

It’s a lot to ask of anyone. It’s a huge amount to ask, and quite a stressful experience—so we worked really hard to try to make it very accessible, and to share as much information as we possibly could with people before they came in.

The process was made much easier because we have two autistic consultants on the project. Dr. Claire Evans-Williams, who is an autistic psychologist, and Cos Michael. Claire and Cos were really great in working with me to put together this huge wodge of information that we sent to people that had everything that you could ever want to know, and I think that helped. We actually didn’t have anyone who said they were going to come in and didn’t come in, which is a miracle. It was really great, we had really, really brilliant participants. That made it a lot easier. Logistically, it was difficult in terms of getting… I mean, it’s hard enough to get eight of your pals to get down to the pub at the same time together, so getting eight people to come in and do a thing is pretty tough. So that was hard.

And also, I think another thing that could have gone wrong from a more scientific angle is we could have really picked bad tasks. So the diffusion chain stuff has been used pretty extensively in cultural evolution psychology—which isn’t my background at all. It’s not been used in autism. As far as I know, it’s not been used in autism in adults at all. And we wanted to make sure we picked a task to use in the diffusion chain tasks that was not going to be systematically more difficult for autistic people. So we didn’t want to have a task that the neurotypical people would be fine at and the autistic people wouldn’t because they were autistic. We didn’t want to have anything that was too fine motor-oriented, or had horrible sensory stuff, or had a big language load, or had all these kind of different things that we know that autistic people might particularly struggle with, especially in a stressful situation like this. So we worked for a really long time to find tasks that would be okay and would be possible and acceptable and fun and that was difficult, scientifically as well.

Because you want to get something where you’re going to get a good amount of variance in your data, so you need a task that you can score within a range where you can then get good statistics. It’s difficult to come up with a task that does all of these things that you normally get in scientific tasks but that can still be kind of very measurable in a concrete way. We could have just picked the wrong task and it could have all gone horribly wrong.

TPGA: How has your study been received?

Dr. Crompton: I think it’s been received pretty positively. Obviously, this study comes off the back of a lot of autistic people telling us about their experiences, and saying that they feel more comfortable with other autistic people—so they’re probably reading this and saying, “yes, I know,” which is fine [laughs]. First person accounts are so important. It’s what the study was based on. But to make impact at policy level you need to have data for it as well. It’s just the way of the world. So we needed some data for it even if it did state the obvious to a lot of people.

TPGA: We talk about about that a lot when we discuss research at TPGA. Much of the time, it doesn’t matter if you know; you have to show.

Dr. Crompton: Yeah, exactly. And I think the thing is a few people have said, “that’s very obvious,” and it might be obvious to them—but it’s not obvious to everyone else. It’s really not. And it's not in the narrative that we’re getting about autism in this public dissemination of autism knowledge and autism awareness, so it’s kind of important that we’ve got the data to back that up.

We’ve had a huge amount of really, really positive feedback, and a lot of people saying it really resonates with them. They’ve said that it’s been really nice for them to see that this is a “real” effect, it’s not something that they’re imagining: there’s numbers to back it up.

I think the most important thing the data shows is that autistic people can communicate just fine in the right situation. We’ve had a really nice response of people saying, “thank you for showing that I’m not doing it wrong, I’m just doing it differently,” which is great, so it’s been really nice.

TPGA: How would you like the findings of your study to affect approaches of professionals to supporting autistic people in the real world?

Dr. Crompton: [laughter] …. so...

TPGA: Well, you alluded to this in your previous answer by saying that you can’t change policy if you don’t have data.

Dr. Crompton: Yeah, so I think there’s a few interesting ways that this could be taken forward. I think, most importantly, it’s a pretty radical finding so I think we need replications, and we need similar studies showing similar things. In saying that, there’s work at this conference that’s being shown by Brett Heasman and Kerrianne Morrison and it’s all converging on this same narrative, so there’s this growing body of evidence suggesting the same thing.

I think, particularly from our study, it shows the importance of things like autistic-led spaces and the value that can have, and that the need to create these spaces where autistic people can be comfortable amid themselves and talk to other autistic people is really important—whether that’s as part of schools and education, whether that’s in post-diagnostic support, opportunities for adults, things like that.

I think it’s really important to make sure that opportunity is available for people. The last thing I want people to think we’re suggesting is that we should ghetto-ize autistic people. “You go and talk to the people who are like you.” That’s absolutely not what I’m saying and not what we would want at all. But I think creating these spaces that aren’t led by someone who’s telling you what to do, who doesn’t know what your experience is, is really, really important.

I think that we’ve got a good chance to be leading on and doing some good work from this, and we’re about to start another project based on these findings that’s looking at co-designing a peer support system for autistic adults. I’m working with the Autistic Mutual Aid Society of Edinburgh to create that, and I think it’s a really nice, practical applied way of taking this work and seeing how we can translate these findings into the real world. How can we look at what the applications of these things can be, and whether they can benefit people.

Obviously, it’s difficult to translate basic science findings into clinical practice or educational practice or whatever else. It’s all a step-by-step process, but I think it’s a really exciting step. I’m really excited to see what happens with it.

TPGA: Thank you, Catherine, I really appreciate talking with you.

Dr. Crompton: Thank you.

----

Transcription by Max Sparrow.