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The Middletown Centre for Autism Podcast
The Middletown Podcast features interviews with leading thinkers and practitioners across the autistic and autism community. Conversations are autism-affirming and neurodiversity-informed with a focus on the lived experience and knowledge of our community. Episodes highlight issues impacting autistic people and we share ideas for family members and school staff who are providing support.
The Middletown Centre for Autism Podcast
Holly Sutherland - Understanding Autistic Communication
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In the latest Middletown Podcast, we chat with researcher Holly Sutherland about her ground-breaking work focusing on autistic communication. We discuss differences in communication between autistic and non-autistic people and practical ways for non-autistic people to make their communication more meaningful. We also discuss Holly’s experience as an autistic autism researcher.
Introduction to Holly Sutherland
Speaker 1Welcome to the Middletown Podcast . I'm Kat Hughes , I'm a researcher at Middletown and I'm also autistic . In this episode I chat to autistic autism researcher Holly Sutherland . Holly has conducted really interesting and really practical work to help us better understand autistic communication and differences that might exist for autistic and non-autistic folk . She's a brilliant , natural way of talking about research and she takes a really inclusive approach where she highlights how we can work together towards clearer communication , whatever our neurotype . I could have talked to Holly for ages about all the different elements of her research . I hope you enjoy our chat about all the different elements of her research . I hope you enjoy our chat . So thank you so much for joining us on the podcast . The first question I have for you is kind of based on an assumption why is communication between autistic and non-autistic people different ?
Exploring Autistic Communication Differences
Speaker 2Why do we have sort of different communication styles . Well , first of all , thank you very much for having me . It's a delight to be on here , um . And secondly , that is a really good question and if I knew the answer to that definitively , um , I would be the most famous autism researcher alive and I would be set for life career-wise . Um , this is kind of really at the heart of , I think , autism research in general .
Speaker 2Obviously , we know autism is a social communication difference . Historically thought , autism is a social communication difference , historically thought of as a social communication disorder , and all of autism research is like well , why , what's different ? And we have lots of kind of specific little bits and pieces like oh , autistic people use pitch or tone of voice differently , or autistic people don't necessarily pick up on , for example , sarcasm and things . But nobody's really come up with a particularly convincing , you know , theory of everything that explains why all these different bits and pieces are different between neurotypes .
Speaker 2If you want my perspective , I think that focusing on this social communication styles thing is really important . That's what I did with my PhD , because we've previously been focused on kind of features and , as I said , you end up with all these little bits and pieces that don't necessarily tie together . But when we were talking to autistic people and we're saying , well , why do you communicate ? What's important to you when you communicate , we got these kind of more holistic things like , well , honesty and authenticity is really important to me , or I primarily communicate , transfer information , and it frustrates me when people communicate in ways that aren't about transferring information , like making small talk about the weather , for example , and I think those things , while they're still not a theory of everything of autism , you can tell non-autistic people about those and they can use them in actionable ways in a way that you can't . If you say , well , autistic people , you know , the pitch of their voice might be different . It's like , well , great , what am I supposed to do with this ?
Speaker 1That's such a good point and I love that your research kind of took so many different perspectives in terms of looking at communication style , and so I know one of the things that you did was sort of ask autistic adults to describe their experiences communicating and socializing with other autistic folk , and how did they describe ?
Speaker 2that With other autistic people specifically
Autistic-Autistic Interactions and Friendships
Speaker 2it . That was really interesting because when I went into this project we were looking for those little like features I was telling you about . We really went in being like there are , we're going to find , find little . We call the markers of rapport , so kind of body language or whatever that was indicating autistic people , liked the people they were talking to . And then we actually talked to autistic people and they were like that's ridiculous , don't do that . Um , uh , the way I behave is completely different with everybody .
Speaker 2Like , I have little , these very specific kind of patterns of behavior and routines and often kind of sets of stims or kind of social scripts that they use with different people and they're very individualized in a way that I don't think is necessarily the case for non-autistic people , right , I think non-autistic people right , I think non-autistic people tend to will develop those as friendships go on , but tend to start off with kind of a this is how I talk to people sort of thing , and the autistic people we were talking to were like no , we go into every different friendship we have kind of completely fresh and new and we we build something from the ground up , which meant that in terms of when we were talking to people about what communicating with other autistic people was like . It was often very different from person to person . So some people were like me and my friends mostly , just like hang around in silence , we play our video games and then we leave and this is great , we love it . Or we had some people that were like I have , you know , a point by point script . I have a friend I telephone like once a week and we went through the same like five questions every time and then we had the telephone call , um , so there was a lot of this like really idiosyncratic stuff . Uh , but what we did get that was really similar between autistic people was saying that communicating with other autistic people is really important to them and also , really , um , often not always I don't want to kind of perpetuate the idea that every autistic person loves every other autistic person , but when people are talking about their autistic friends versus their non-autistic friends , for example , um , they said it's just really lovely because it's somebody I can be myself around .
Speaker 2They're people who get me , they understand , understand things . They're , you know , used to the same kinds of stuff that I have to deal with . You know , if I talk about things I'm struggling with in my life . They're like oh yeah , I get that too . If I'm like , can we turn the lights down ? They're like , oh yeah , the lights are really unpleasant . So just a lot of those really kind of small sort of shared lived experience type things . Um that that really made people feel like they were . They had a different sort of friendship , often to their autistic friends and their non-autistic friends , but not always . I don't want to discourage people .
Speaker 1There were also lots of lovely examples of people being like well , I have non-autistic friends , but they know I'm autistic and they really get autism and so I can also just be myself around them as well yeah , but I think that's really important , isn't it that that idea that you know we don't want to sort of suggest that that neurotypes should be sort of siloed together , I think there's a sort of a sort of thinking around that it sort of started to develop and I think , yeah , once people take the time to understand each other and try and take each other's perspective , I think , yeah , it makes a huge amount of sense . That sort of cross neurotype communication can absolutely work .
Speaker 2Yeah , I think it's really important not to be like we should segregate neurotypes for their own kind of benefit . That's absolutely not the case . I think really what it is is a lot of autistic people , especially that I talked to , were talking about for most non-autistic people . They feel they have to mask in front of them . So even if they're friends , you know kind of casual work friends or people they know at school , they're still people they're having to put up this kind of front and pretend they're not autistic for . And so I think that is really the big thing .
Speaker 2Like obviously it's important to have some friends who share , you know , any kind of socially stigmatized trait which autism is . That you can talk about lived experiences of kind of discrimination and stuff like that's really important in terms of community building and solidarity and kind of collective consciousness , I guess . But I think a lot of what's driving people being like I like being around other autistic people . It's just like they don't look at me weirdly when I stim or whatever . And actually if you're around non-autistic people who are also like hey , I love it when you make weird little noises or you flap your hands or whatever , that's great too , like you're still getting . You're getting exactly what you're getting from the autistic people , but from non-autistic people just acceptance , isn't that ?
Speaker 1yeah , that's really important . And then you conducted a study where you asked sort of autistic and non-autistic people to sort of observe interactions . Am I right in thinking about , and how did you go about that ?
Speaker 2um , so that one I wasn't actually involved in the data collection , for I was given the data . But I can talk a little bit about um , about what we did . So this is a . This is a really fiddly study to try and explain . But we so we got pairs of people um to have a little chat in an experimental setting . So we got them in a room , videotaped them . They had to talk to each other , I think about like the last holiday they'd been on or something . And some of those pairs of people both people autistic , some of them , both people were non-autistic and some of them were mixed pairs , so one person was autistic and one person was non-autistic . Them were mixed pairs , so one person was autistic and one person was non-autistic .
Speaker 2And we took those videos we'd made and we showed them to observers or raters who we asked .
Speaker 2We asked the observers whether each of the people in the video was autistic . So these were just kind of random people we'd not
Identifying Autism in Social Contexts
Speaker 2pulled in off the street but they weren't kind of diagnosticians or something and they were what we'd call lay people and some of those people were autistic and some of those people were non-autistic . And we were interested in kind of two main things with this One , whether autistic people are better at spotting other autistic people than non-autistic people are , and two , whether social context makes spotting autism easier or harder . So what I mean by that is we've done a lot of , or there has been a lot of , research recently looking at autistic autistic interactions , so interactions where two autistic people are interacting , and they seem to go a lot easier than autistic non-autistic interactions , than autistic non-autistic interactions . So we were interested whether , if you have two autistic people interacting , it's harder to spot that they're both autistic people , right , than if you have a social situation where it's an autistic and a non-autistic person what did you find ?
Speaker 2so we , again , we found a lot of different things , but I think the two , the two big headline ones , are that one , autistic people contrary to received wisdom , right , like there's a lot of different things , but I think the two , the two big headline ones , are that one autistic people contrary to received wisdom , right , like , there's a lot of autistic people on online who talk about having autdar , which is kind of gaydar but for autistic people , and we didn't find any evidence of that . In fact , we found autistic people were slightly less good at identifying autistic people very slightly , but significantly , um , the non-autistic people . We , I say we think we don't have any idea why this is . If you forced me to make a guess , I would have kind of two guesses , one of which is there's not a lot of um instances where you're watching social interactions , right , um , you tend to .
Speaker 2On a day-to-day basis , you're involved in social interactions and what we saw was what was driving the autistic people not doing so well at identifying autism overall was when they were watching two non-autistic people interact . They often thought both of those people were autistic and I think what's going on there is that if you're autistic , the positive interactions you've had with other people are often generally with other autistic people right . So , because your experience is any interaction that goes well , both people are autistic and any interaction that goes badly I'm autistic and the other person's non-autistic . They see two people having a really nice , chill interaction and they go well . Clearly they're both autistic . Because the only time I've ever experienced this is with other autistic people and I think that's a really reasonable thing to think and I'd love to do some research as to whether that's actually the case . And I think the second thing is it's very different watching an interaction to being in an interaction . So if you're in an interaction , I suspect you'd still find that autistic people have kind of an advantage at spotting autism over non-autistic people , maybe because you know you there's a certain kind of phenomenological feeling you get when you're an autistic person talking to another autistic person from personal experience that I don't think would come across in video . So that was the first finding , which was unexpected . And then the second finding , which was expected , is yes , if you have two autistic people , it makes it much harder to notice that somebody is autistic . So for both autistic and non-autistic observers , they did much worse with the autistic pairs than they did with the mixed pairs at guessing people's neurotypes correctly . Autistic people had a slight advantage , the autistic observers , but overall we think probably people .
Speaker 2If you tell random people off the street to identify autism , what they tend to look for is someone who's having a bad time in a social interaction . Right , they're looking for somebody who's not quite getting things or seems kind of socially awkward . We know from previous research that social awkwardness . If you ask people to judge whether someone's socially awkward or not , they're really good at picking out autistic people via kind of the proxy of social awkwardness . So we think probably because there's not that social awkwardness .
Speaker 2So much with autistic , autistic interactions . If you have two autistic people interacting with one another , observers go well , they're fine , like they're having a nice time together . So clearly nobody is autistic here . Whereas with those mixed pairs you have autistic and non-autautistic people , that little bit of kind of cross neurotype friction , and people go , oh , there's something , something's not quite right here , um , and then they start hunting for the autistic person what is fascinating and makes so much sense and it kind of it really makes you think about this the assumptions that we're all making at any given time about the people that we encounter and the people that we see .
Speaker 1That's it's so , so fascinating yeah , and it's .
Speaker 2It's got really important implications for , for example , I think , diagnosis and things like we did this with people , lay people , um , but if you're looking at , for example , autistic clinicians diagnosing other autistic people or you're looking at a non-autistic clinician who's diagnosing a child and the parent is also autistic and in the diagnosis and they're looking at parent-child interactions and looking for kind of evidence of , you know , miscommunication or socializing not going quite well if that's not between autistic people , that has really profound implications for how good we are at basically spotting autistic people in happy social environments .
Speaker 2Right , like , how do you ? You know other people have have talked a lot more about this . Um , can't remember who it is , but somebody talks about like the diagnostic procedure doesn't account for kind of happy , well-adjusted autistic people , which I think is increasingly a problem , because there are delightfully increasing numbers of happy , well-adjusted autistic people with kind of autistic families and friend groups . I think there's a real risk that those people get missed by our current kind of diagnostic assumptions and processes if we're not quite careful . Yeah , that's a really good point .
Speaker 1And then I know you also run studies that involve community members that have high support needs .
Speaker 2And how did you go about doing that ? Yeah , so this is that
Research with Autistic People with Higher Support Needs
Speaker 2was really challenging . So when I talk about high support needs in the context of my research , or higher support needs , I tend to say because I think there's a risk of creating this kind of false dichotomy of high versus low support needs and it's like no , it's , it's . It's a range from people like me who are pootling along quite happily with very minimal support , to the kinds of people I was working with who need 24-7 care , help with kind of dressing themselves , feeding , etc , etc . May have very few words that they use and not , you know , not get along with any of the methods , alternative methods of communication that they've been offered , and it's really difficult to do research . That's kind of actually not just going in and running a bunch of kind of cognitive tests and getting out of there with this group of people because you can't ask them questions in the same way that you can with autistic people , with lower support needs . So the previous studies we'd done had been just find some autistic adults and ask some questions and some of these people , even the ones that used spoken language or had other forms of communication with them , they often really struggle with these kinds of open-ended and reflective questions . So even if we think they might have answers to them inside their head , they struggle to get that out and communicate it in a way we can understand . So we chose to take an approach that's called ethnography .
Speaker 2I think the closest frame of reference most people would have for this is sort of long-form journalism almost , where you , you are very flippantly , you go somewhere and you kind of hang around and watch and make a lot of notes , um , and then you think very hard about it , which massively undersells the amount of work that goes on .
Speaker 2There's a , there's a lot of work that goes on there , um , but I embedded with two um based support services for autistic people with high support needs , um , kind of intermittently over the course of about a year I think so I was , you know , in the services with staff , um helping where it was appropriate , given my level of care expertise , which was not very much Helping with providing support to people going out on day trips when they went places , doing activities with them , chatting , building relationships , which is really important with this group of autistic , with any group of autistic people , but especially this particular group of autistic people . They can be quite slow to warm up to people . Group of autistic people um , they can be quite slow to warm up to people , so there was a lot of uh , yeah , hanging around , relationship building , um , talking to people and , uh , observing things and this is probably a really difficult question , but what did you find within that ?
Speaker 2oh , we found a lot of stuff , um , so some of it was more general to sort of care sector things . So we picked up on things that are kind of more well known about the care sector , like there's a lot of poverty and stressful life experiences and consistent care , especially for a population of people who really dislike and are often quite profoundly disturbed by change . Having this kind of uncertainty and flux and having carers who are having to leave because they're burnt out or because they're not earning enough money , or who are having to go on sick leave because they're struggling with their mental health , is really difficult and makes the already challenging job of providing care to this group of autistic people really difficult . More specific to the autism stuff , I think we found that there was often a lot of miscommunication or misunderstanding between staff and supported people , which is not necessarily surprising . We know this kind of from other stuff , from the double empathy problem , but nobody's looked at this in autistic people with higher support needs before . So it was really interesting to see that there was still those kinds of like . Oh well , you know he always covers his ears when he goes into this particular room and who knows why . It's just like kind of a thing he does or something and I'm like , well , the radiator's making a really loud humming noise . I'm not particularly keen on this . That might be why , um , you obviously have to be a little bit careful that you're not reading too much as the researcher into things , but there was certainly a lot of um . Just yeah , the differences in life experience between autistic people and non-autistic people um is is often quite profound , and obviously there's a difference in life experiences between me as an autistic person and them as autistic people who are receiving 24-7 care . But there's still similarities in terms of sensory processing or in terms of social preferences or in terms of stimming or special interests and stuff like that , and that tended to give me and also there was autistic staff members working at these services an advantage in terms of having insight into what was potentially going on in these people's heads and how we could potentially make things better for them .
Speaker 2I do want to emphasize that just having loads of autistic people there is not necessarily a magic cure-all . So it was also really important having staff that had been around those people for a long period of time , whether they were autistic or not . So I was there on and off for a year , as I said , and there were these pair of autistic people at one of the services who , to all accounts , were just sort of occasionally in the same space together . I didn't really pick up on anything other than sometimes these guys sit in the same room together , which is not uncommon because there's a limited number of rooms you can sit together with um . And towards the end of my research , one of the staff members were like oh well , person a and person b are really good friends , obviously . And I was like what do you mean ? They're really good friends . And the staff member was like well , you know , person a always waits for b to open their drink before they start drinking , like when they have a little can of coke or break times or whatever , um , and if person b isn't in early enough in the morning , person a will start walking in circles around the room . And so there are those kinds of insights that came from a non-autistic staff member , right , you only get via having worked with someone for years and years .
Speaker 2So one of the big things we pulled out of this is that there has to be this kind of triangulation expertise . So we need the expertise of people who've worked with supported people for years and years and indeed the infrastructure and funding to provide people the opportunity to work with people for years and years , and indeed the infrastructure and funding to provide people the opportunity to work with people for years and years . We need autistic insights in there because that can really help , and we also need , obviously , parents and carers and staff involved , because there was so much to do with people's home lives that had a huge impact on how they were in services . So if people aren't getting enough sleep , if they're not eating enough , if their home environment is , you know , noisy or there's lots of other people there or it's stressful for them , that has massive impacts on care provision as well . You can't kind of silo these sorts of things and be like oh well , they're here now , so whatever we do should be enough to make up for xyz .
Speaker 1You really need this joined up holistic , um , multiple expertise sort of approach and then you , you mentioned kind of how in the past and in sort of in you know where I first sort of dipped my toe in autism research myself . Um , it was very much about sort of looking at differences in how people communicate but it was so specific in terms , like I was looking at sort of infant language development .
Speaker 1That was all you know , glottal stops and vowel glides and like really specific things that people were looking for differences in . Are there more kind of helpful things that we can sort of pay attention to that you found through your work ?
Speaker 2Yeah , absolutely
Practical Communication Tips for Cross-Neurotype Interactions
Speaker 2I think so . So some of the big things that we pulled out was one that autistic people find honesty really , really important , and this was sort of a novel finding . People have looked at kind of autism and lying before , but often in terms of like , how good are autistic people at lying or do autistic people lie ? And what we found was a lot of autistic people being like really frustrated by how often people aren't honest , and that didn't necessarily always mean lying , although participants often couched it lying . So people were like , oh well , somebody said , oh , you look lovely , when actually I looked horrible in my outfit and they lied to me . And I think a lot of non-autistic people would consider that white lies or just kind of being polite or kind of general social pleasantries . And a lot of autistic people like I want you to be completely honest with me all the time . Don't be sarcastic , don't , you know , do all that kind of social chit , chat stuff . Don't do any of this . Just just tell me the truth , please . Um , and and that for them I think was a part of being authentic felt that when people were doing these sort of social pleasantry stuff , people weren't being authentic with them and they're like I can't get to know people because they won't be truthful with me . Um , so I think that's one thing I would say is a is a useful and interesting difference . Um , autistic people , at least in our studies , um and this is again something that's kind of been this is better attested in the literature .
Speaker 2Um , autistic people tend to like information sharing more than kind of social oriented um conversations . That doesn't mean that autistic people don't like to be social . It's just that there's , I think , a lot of a lot of talk that goes on between non-autistic people is primarily social in function . So you know , how's your mom ? How's your dad ? Isn't the weather today terrible ? Did you hear about that horrible traffic jam on the m25 ? No one cares about any of this stuff . I'm gonna be really , really honest and say nobody cares . I don't think even the non-autistic people care about it . But it it has this kind of social function that I think non-autistic people often get a lot out of , even if they're not getting information out of it .
Speaker 2Autistic people don't seem to get much out of that socially . So for them , for us , sharing information , so talking about topics people are passionate about , talking about , you know things that you actually want to communicate information to somebody um about is , is much more important , and they found those kinds of conversations and interactions a lot easier to handle from kind of a social perspective , but also a lot more interesting , less tiring , less stressful . You know a lot of people being like if somebody talks to me about what their passion is , even if I'm not necessarily super passionate about it myself , I really enjoy that as an interaction , like it's just lovely , you know , skip all the small talk , tell me about how you're obsessed with fresh water , scuba diving or something . And then I think the third thing is that a lot of autists because there are these whole kind of social layers that non-autistic people find useful , that autistic people don't tend to find so useful and so don't tend to use A lot of autistic people like people read stuff into what I say constantly .
Speaker 2So I will , you know , not be making the facial expression that they're expecting , or I will say something a bit more bluntly than they're expecting , and non-autistic people will be like well , clearly you hate me and you're deliberately being rude to me .
Speaker 2And there was a lot of people that were like it's really stressful all the time having to watch , for , you know , I don't know what language you're speaking and apparently I keep swearing in it . Essentially , um , it would be really nice if you would assume that if I accidentally swear at you , it's not deliberate , because , trust me , if I don't like you , you'll know about it . I will tell you I don't like you or I will leave the conversation . You , I don't like you , you'll know about it . I will tell you I don't like you or I will leave the conversation . You , I don't have the time or energy for any of this stuff that you're doing . Um , so I think the third thing I would say is is , um , that non-autistic people should probably do a little bit less reading into autistic people's kind of social social cues and inverted commas right , because they're not deliberate social cues .
Speaker 1Um , then they may be due with non-autistic people also fascinating and so useful and practical , isn't it like it's ? It's stuff that people can genuinely keep in their head and bring to those interactions , just to kind of level the playing field of interacting a little bit yeah , I think this was .
Speaker 2This was something , as I said , I started off um my PhD research being like we're going to look for little itty bitty pieces and then , when we didn't find those , I kind of initially panicked and was like , oh god , I'm gonna have to restructure my whole PhD . Um . But actually as the PhD went on , I was like these are way more useful than finding these little itty bitty things , because talking to autistic people or to non-autistic people and saying , well , this is what I found . But they were like , huh , yeah , that would actually make things way easier . Like I can tell somebody about this . Oh , I'm going to , you know , I'm going to try this with my autistic nephew , or I'm going to tell my friends that they should be more honest with me , or whatever . Like maybe this would work . And I think that's something I'm really .
Speaker 2Anytime I talk about my research , I really emphasize that I think as scientists , we tend to want to look for the little bits and pieces that we can find in these really beautifully engineered and set up studies that have you know , all the stats associated with it , and we've isolated all these different bits and pieces , um , and there certainly is a place for that kind of research , um , but I think doing that kind of research exclusively when we have such a bad kind of higher level grasp on what autism is , what it looks like , um , and kind of practical tips that we can give people about how to interact with someone who has a different neurotype to them , there's also definitely a place for this kind of research . This like can you be more honest with me ? Type research , and I don't think a lot of people are doing that at the moment and I'd love to see more of it yeah , I agree completely .
Speaker 1I think , yeah , we've spent an awful lot of time looking at very detailed things based on assumptions and I think we've we've ignored where we can actually practically make a difference a lot in research . So , yeah , I'm excited to see this sort of work happening . I really am . And then as an autistic autism I'm fascinated to know kind of what drew you to the topic . If you're comfortable talking , about it .
Holly's Journey as an Autistic Autism Researcher
Speaker 2Yeah , that's a story stretching back nearly 20 years at this point , which is crazy , would have been oh god , not . Not that far into the 2000s , like always into the 2000s , but not nearly as far as we are now . Um , and at that time there wasn't a lot of information available and certainly not a lot of popular culture information and certainly not a lot of like neurodiversity friendly information . They were kind of just the first sort of autobiography autistic people coming out , but they were sort of still very isolated and so I grew up being like , well , I'm autistic , which means I'm bad at making friends with people , and I frequently put my foot in my mouth and that's about it . There's clearly nothing else going on here .
Speaker 2Um , and the first time I bumped into the idea that you know , maybe people had done research on this and there might be more information than you know two , two , two lines of you know you're bad at friends and you can't communicate properly , um was when I went to university for my undergrad and I started doing um linguistics and they had a terrible module on autistic people as part of this . That um , if you think about kind of where autism research was I mean , this was 2010s , but it was using research from kind of 15 years prior . So it was very like autistic people are incapable of emotions . And I sat there and I was like , okay , so people have done some work on this , but it's clearly really bad because , like I could do better than I can tell you that we've got emotions , um , and so I started actually doing research . I did my underground undergraduate dissertation and my master's dissertation on autism , um , and I also started finding autistic people online and going oh , all that stuff I do with my hands is also like a common autism thing , and oh , the fact I have to cut the tags out of my clothes is also an autism thing . Ah , so many of these things that I thought were just me being like weird and childish are actually just really entirely normal for my neurotype , um , and so all of that kind of collided with this sort of increasing awareness of my identity as an autistic person and being autistic not just having an autism diagnosis alongside really engaging with the research and being like . A lot of this is interesting and some of it resonates with my experiences , but a lot of it's framed in a really weird way where it's clear that it's a non-autistic person who's watched autistic people and gotten about 50% of things correct and then just leapt to some really wild conclusions as a result .
Speaker 2Um , and I was just like , not only do I think I can do better than this because the bar is on the floor like any autistic person could do better I'm not saying I'm special , um but also increasingly , I was like I feel like somebody has to be doing better than this . And there are now so many autistic autism researchers it's lovely , but I started wanting to do this back in kind of 2014 . And they just were not a lot , or if they were , they were kind of closeted or very ignored by the field , and I started just being like I feel like someone has to come in here and start know , waving some pom-poms and shouting at people a little bit , as it were . Um , and yeah , I spent several years trying to get a doctorate as a result and eventually got this one amazing .
Speaker 1That's fantastic and like the power of representation in terms of how you were able to sort of change how you felt about yourself because you sort of were suddenly encountering other autistic people . But then the power of representation in terms of you and what you're kind of bringing to the community , I think is just so important .
Speaker 2Thank you . I don't know . I would love to think that maybe there are some autistic people out there looking at me and going , hey , if she can do it , so can I . But also there's so many good autism researchers autistic autism researchers out there as well , and so many non-autistic autism researchers doing really good , robust , you know , neurodiversity , friendly , community , engaged , kind of activist type research . There are a lot of people out there now um that that I think are kind of there as as um representatives .
Speaker 1It's something I say a lot these days , but it is an exciting time , I think , in terms of autism research and how we understand autistic experience and how it's all changing . I mean , it's a long time coming .
Speaker 2No , it's , it's , it's massively . It's been a massively exciting time , um , to do a PhD . Uh , I mean , I've been massively excited about my autism research , but also , aside from that , it's really you . You really do feel like the field is sort of undergoing a little bit of a revolution for the better at the moment . Um , and I'm really excited to see where we are , maybe 5 , 10 , 15 , 20 years down the line .
Speaker 1Yeah , definitely , and did you feel that you learned about yourself through your research , as you were ?
Speaker 2going ? Yeah , definitely , um , I I've I've joked previously that I feel like I got to do a PhD on myself for about four years , um , so I guess in some ways the research was quite selfish . I , yeah , I learned a lot . I mean getting to do the kinds of qualitative research , so that really like talking to people , relational um , you know , asking people questions about their experiences , type research um , is really powerfully affecting , I think , regardless of what group you're part of and what group of people you're researching a part of . But there's a huge difference between you know , casually talking to autistic friends or reading , you know , autistic people's blogs on the internet and doing this kinds of research and getting these very often like personal , thoughtful , thoughtful , vulnerable , sometimes painful reflections by people and going , oh my gosh , yeah , that's exactly what it feels like . Or , you know that's slightly different to mine , but it's making me think about my thing in a different way , because there's these kinds of shared commonalities or whatever .
Speaker 2Um , and I think definitely working with autistic people with higher support needs as an autistic person is a profoundly affecting experience , or at least it was for me . Um , I I'd never worked with or really even encountered autistic people with higher support needs . Prior to this , I'd , you know , had encountered people with down syndrome or intellectual disability , um , but not autistic people . And I remember the first time I walked into the services and I was like terrified because I showed up to this random service . I didn't know anyone there , I didn't really know what I was supposed to be doing . I felt like I was kind of making it up as I went along and I ended up sat in this room with an autistic person and the person that was supporting them that day , a neurotyotypical staff member . I remember sitting there and being like this person moves , like me , like I've never seen somebody who moves like me before , and there was this really profound sense of connection to this person who has very different support needs to me .
Speaker 2And , you know , I think a lot of people would look and say , well , you're more similar to the neurotypical staff member because both of you have jobs and you went to school and did it . And that was actually not what I felt at all . I felt a lot more closely connected to and similar to the autistic person with high support needs in kind of a very fundamental sort of way , and I didn't expect to go in there and experience that I expected to go in and be like , oh , this is really difficult and strange and stuff . So that was a really yeah , that was a really interesting experience and I think shaped a lot of the rest of my research there , because I was also unpicking sort of my my own emotional responses and , as an autistic person , to being like , oh yeah , it is really like the whole of the spectrum , right is , we are all just autistic , whatever the other bits and pieces on top of it are , and those things can be profoundly different .
Speaker 2But there are , you know , autistic people of color , or autistic people with other you know disabilities , or autistic people in very different financial or social situations to I am that I'm in , that I'm also profoundly different to and will struggle to understand the experiences of . So I think we really need to stop trying to separate out autism into . You know , there's there's the profoundly autistic people um , to use a a slightly controversial term and then there's the other autistic people who are kind of mostly trucking along . Okay , and start looking at it instead of these , one of these sort of axes of diversity , almost that actually , no , we are all autistic , just other people also can have other identities and other you know needs or disabilities or traits , on top of being autistic .
Speaker 1It's very meaningful , isn't it , my goodness . And then is there advice based on your work and your experience lots of different perspectives that you bring . Is there advice that you'd give to people who are supporting an autistic young person ?
Advice for Supporting Autistic Young People
Speaker 2oh gosh . Um , a lot of my work was with adults . So , in terms of talking to parents , I obviously get a lot of people who support kind of younger people or who are parents or carers or teachers asking for advice , and I'm always a bit like , oh , I don't know , I don't know . But I think the really key thing would be to , whatever the relationship you have with an autistic young person , to go into it with a really open mind . Don't go into it trying to apply yourself and your own assumptions to this person . I think we're all guilty of that . Right , we go . Oh well , everybody's basically a little bit like me . So if I like this , clearly everybody does , and that's not true at all , ever for any human being . We're all unique . But it's especially dangerous if you do it with autistic people who often you know , most obviously with kind of sensory profiles and stuff can have very different experiences of of the world and of what sort of things are painful or uncomfortable or distressing to them , but also , more generally , very different ideas of what causes them joy or what they enjoy or what's fun them joy or what they enjoy or what's fun . Um , and I think if you , if you go into those sorts of situations . With an open mind a you , you reduce the risk of making , you know , missteps that are going to distress somebody , but you might also learn some stuff about yourself as well .
Speaker 2You know there were , there were , lots of accounts of autistic people who were like , having talked to my non-autistic friends , you know , some of them have , you know , started stimming or they feel more capable of , you know , being a bit weird about me around me and they monologue a bit more and they started picking up little bits and pieces of autistic culture or how autistic people behave that are are useful or meaningful or interesting to them . So that's one thing and I think the second thing would be to really seek out other autistic people who might be able to kind of illuminate something about the autistic experience . In an ideal world it would be just ask the person you're supporting what it is they want or need . But especially for younger people , that's really challenging . If you go to a child and say what do you want , they're like I don't know , a chocolate ice cream Question mark . They don't know what's out there . They're busy trying to focus on learning about the world and themselves . They might not necessarily have a great grasp on what it is they actually want or need or what might be helpful for them .
Speaker 2And obviously not every autistic person is alike , but a lot of us have at least some points of similarity with other people and I think there's a real value in , you know , being cautious and being slightly critical , because there's misinformation everywhere , including from other autistic adults , just as much as there is from anywhere else . But kind of reading with an open mind about other autistic people's experiences or talking to autistic people about their experiences is often really valuable in terms of developing those kinds of heuristics that I've been talking about . Right , like you know , be more honest when you're talking to people in ways that a lot of the communication guides for how to interact with someone with autism sort of miss . They don't really get at those sort of relational , you know , social type things in a way that I think often reading about a lot of autistic experiences and then synthesizing your own things from that can do .
Speaker 1That's a really good point because like , yeah , I think a lot of those communication guides , you know , people come away being really certain that they're not going to say it's raining cats and dogs , because that'll really confuse people . But they don't necessarily have practical things that they can take .
Speaker 2Yeah , I think . I think there's a lot of people who hear you know , don't use non-literal language around autistic people . I'm like , well , I'm never going to make jokes ever , which is really annoying because a lot of autistic people like jokes but then still say things like would you like to set the table ? And then get really upset when the autistic person says no , and it's like so clearly , clearly , this is not working very well as a heuristic for non-autistic people true , definitely true .
Speaker 1And then is there
Closing Thoughts and Episode Wrap-up
Speaker 1advice that you would give to your younger self , knowing everything that you know now , oh boy , um .
Speaker 2I kind of wish I could download like a substantial part of my brain into her head , because I think that would make her life a little bit easier . But I think if there's one thing to pick out , it's that there are people out there who will like you as an autistic person . Right , I think I don't know what it's like for autistic people nowadays , but certainly for me it was a very isolating and confusing experience , because you're the only autistic person you know and you're like oh my gosh , all my peers around me are going through this . You know , especially as teenagers , this period where they will want to be exactly like one another and look exactly like one another , and you're like I can't do that and also I don't't want to do that and I'm never going to find anyone who understands me .
Speaker 2And some of that's a very common teenage experience , but I think it's exacerbated by being autistic and I think it's really important for autistic kids to know that like things might not suck . You may be in a lovely environment , in which case , fantastic . I'm so glad that there are autistic kids now growing up who are coming out of growing up kind of untraumatized by being autistic , but for kids that are struggling , there are people out there who are also autistic . There are non-autistic people out there who get being autistic . There are non-autistic people out there who don't get being autistic but also don't really care and just think you're great anyways . There are people out there who will love you for who you are .
Speaker 1Thanks so much for listening to the podcast . This is a conversation-based interview designed to stimulate thinking and hopefully , support the development of practice . It's not intended to be medical or psychological advice . The views expressed in these chats may not always be the view of Middletown Centre . If you'd like to know more about Middletown , you can find us on X at Autism Centre and Facebook and Instagram at Middletown Centre for Autism . Go easy until next time .