On the sensory experiences of autistic adults, with Keren MacLennan

Dr Keren MacLennan is a postdoctoral researcher at the University of Reading, who specialises in sensory reactivity, mental health, and autism. She has key interests in examining how the sensory world impacts autistic people, but also why autistic people are at greater risk of developing mental health conditions, such as anxiety. During this podcast, Keren chats to Louisa about a piece of recently published work, co-produced with autistic individuals, that looks at autistic adults' experiences of having sensory reactivity differences.

You can find Keren on Twitter @KerenMacLennan and on Instagram @theanxiousscientist

If you'd like to find out more about the Sensory Street project we mentioned in today's episode, you can find out more here!

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The paper discussed in this podcast is
MacLennan, K., O’Brien, S. & Tavassoli, T. (2021). In our own words: The complex sensory experiences of autistic adults. Journal of Autism and Developmental Disorders.

Transcript

Louisa (0:09)
Are we recording? Yes, we are fantastic. Let's go. Hi, everyone. I'm Louisa. I'm an autistic academic at the University of Reading, and I'm your podcast host for season three of PsychologiCALL.

Louisa (0:23)
As you might already know, if you've listened to the previous two seasons with Sue, PsychologiCALL is a podcast that started during lockdown. And it aims to make an evidence based contribution to conversations about child and adolescent wellbeing, development and learning and neurodiversity.

Louisa (0:38)
Today's PsychologiCALL is with Keren MacLennan, who I have the pleasure of sharing an office with that reading. She's a postdoctoral researcher at Reading, having recently finished her PhD, and she's on the phone with me today to talk about one of her recent papers: "in our own words, the complex sensory experiences of autistic adults"

Louisa (0:55)
So hello, Keren, how are you doing today?

Keren (0:59)
Great. Thanks for having me on the podcast!

Louisa (1:01)
That's good. That's good.

Louisa (1:03)
So we'll start off. First thing I'd like you to tell me is what did you discover in the piece of research that we're talking about today?

Keren (1:11)
Yeah, so in our in our research, we found that so firstly, the types of kind of sensory inputs that are linked with autistic adults sensory reactivity differences. And so kind of being hyper reactive to sensory environments. So like an intense response to sensory input, or being hypo reactive, or being unresponsive or like not responding to sensory input. Or things that people might seek out. So they want to kind of continue engaging either for an enjoyable reason, or because they can't quite disconnect from it.

Keren (1:50)
And so then the other thing we found out was that autistic adults more commonly experience overlapping sensory hyperreactivity and sensory seeking, which is an interesting finding, because sensory seeking is commonly thought to be interlinked to sensory hypo reactivity. And we also found out a bit more about the fact that sensory experiences are actually really complex. And we developed a theoretical model of sensory experiences, which highlights that there are these moderating factors that can increase or reduce short term outcomes and long term outcomes of sensory or activity differences, such as feeling overwhelmed, or the development of mental health conditions.

Louisa (2:34)
Wow, that was a lot in that paper. Lots of good findings! So before we move on to the next bit, maybe just clarify for people that aren't familiar with some of the terminology. Hypo is kind of under reactivity. Is that right? Yeah. And, hyper is like more reactive to something.

Keren (2:54)
Absolutely.

Louisa (2:55)
Brilliant. Thank you. So next question, What motivated you to conduct the study that you did?

Keren (3:02)
Yeah. So, there's a lot about kind of sensory reactivity differences in in children. And that's kind of very commonly researched. But actually, it's very under researched in adults. And it was kind of seen as a child thing, not an adult thing. So although there was kind of some good, good qualitative research, there's actually not a study that had looked at the those kind of types of sensory input that's associated with the sensory differences across domains such as vision, hearing, touch, and things like that. And especially sensory seeking is very largely neglected in literature. And in research, and especially in autistic adults, and there was some studies that kind of said, Oh, it doesn't exist in adulthood. Whereas some of the studies did show that but it's just not really being kind of considered. Exactly. And also kind of combining looking at those different types of sensory input associated with those differences, but also kind of incorporating that alongside the actual lived experiences of those different differences as well.

Louisa (4:11)
Yeah, which sounds fantastic, brilliant. And you developed your study with input from autistic people as well. I saw that when I had a flick through the paper.

Keren (4:19)
Yes, yeah, we did. And we had the wonderful Sarah O'Brien on the team as well, who's an autistic researcher. So yeah, it was like we were lucky to have her involved too.

Louisa (4:29)
Yeah, that's brilliant. So the next bit, what did you have to actually do your study? What did you do?

Keren (4:35)
Yeah, so we did a, it was an online mixed methods study. So this kind of it was a yeah, just an online survey that we sent out and that included multiple choice questions as well as kind of more open questions so people can write more freely about their their sensory experiences. So that kind of a range of different people can take part and kind of contribute in the way they felt comfortable. And yeah, we had 49 autistic adults took part and shared some of their experiences with us and kind of different levels of depth. And, and yeah, as you mentioned that, I think the important part is that we co-produced the study with autistic people. So, as well as having Sarah, on board, we also got feedback at different stages of the research process throughout to make sure that kind of, you know, the study was accessible. But also, we had a feedback group at the end, who was autistic adults, so that they could help shape the results, and also the interpretations of the study to make sure that it kind of represented and, you know, reflected their lived experiences as well.

Louisa (5:45)
Yeah, that makes sense. Yeah, I guess. So if you had just a usual group of autism [Louisa made an error here!] researchers that were interpreting the results, it'd be very different to people that do have that lived experience. So that was, yeah, definitely an important step to include. That sounds really good. I was gonna say something else then. But it's completely left my brain? I'm sure I'll come back in a minute.

Louisa (6:04)
But yeah, so how did you do your analysis, then? So you've sort of gone through your questions? How did you analyse the data?

Keren (6:12)
Yeah, so that yeah, there was there was lots of different ways we approached this. So we did kind of some kind of basic quantitative analysis, just to kind of get frequencies of, of different things. So one of them being like how many people identified as being sensory hyperreactive, hyporeactive, and seeking, as well as kind of identified having those differences within the different modality. So different types of sensory inputs, such as music or touch, and things like that. And we also then did a content analysis, which is where you kind of make categories, it's almost like counts of how many people said that they experienced these different sensory input in those different ways. So associated with the different sensory differences. And then kind of a main bulk of the analysis was doing a thematic analysis. And that's, that was kind of behind the development of our we came up with like a theoretical model, as I mentioned, and in thematic analysis, we look at what the participants wrote about their sensory experiences and the open ended questions and we develop these themes and subthemes that reflect patterns of meaning in the data.

Louisa (7:31)
From what they said you extract themes from what they've said?

Keren (7:35)
Yeah absolutely. And then those themes based on the kind of feedback group as well. And when we presented those themes. Together from that group, they helped us shape this this model that we came up with, yeah. Lots of different approaches.

Louisa (7:52)
Yeah, there were lots of different things involved! With your kind of content analysis, as well, was there are a lot of variation in the sort of different types of sensory experiences that people came up with, or did you find kind of?

Keren (8:02)
Yeah, absolutely. I think that was the that was the complex part. We kind of felt it was very individualistic. There was some things obviously, that were very common across different people. So I guess very aversive things like, loud sounds, lots of background sounds, and light, unexpected touch, things like that. Very, very common. And then there was, I guess, in different domains, like, when it came to taste, and, and things like that, it was a lot more individual and smell as well, as a bit more individual were people it was kind of aligned with people's own preferences as well. And that seemed to kind of play a part too. So yeah, I felt like that it really highlighted some commonalities. But also a lot of you know, that kind of highlighted the need to actually ask individuals themselves, how they experience their environment. And it's not a one size fits all kind of approach.

Louisa (9:01)
Not at all there's yeah, there's so many differences between individual autistic people. But yeah, it's useful to kind of get that richer data. So you can really find out a lot of things are sort of just questionnaires, aren't they? And if it's kind of prescribed questions, it's harder to get that sort of information. So it's a it's a good way of collecting data.

Louisa (9:24)
So from what you've told us so far, what do you think we could learn from the study that you've done?

Keren (9:30)
Yeah, so I would say, I mean, firstly, I think it was really important to be able to communicate in research, the autistic, autistic sensory experiences from their perspective, because obviously, anecdotally, it's all you know, it's commonly talked about, but actually to kind of get it in, in a research paper, I think is really important. And there's Yeah, especially with the kinds of sensory input and the environments and all of that But I think it's just in general, I think it's really important for everyone to understand more about the sensory experiences of autistic individuals, so that they're better understood more widely, and that also autistic individuals can get the relevant supports. And then mental health and physical health can be protected. So I think that's why it's important for a lot of people to kind of see these things and like the learn about them.

Louisa (10:29)
Especially if there are kind of commonalities in things that are more likely to affect autistic people that you identified in that content analysis, if there is more awareness of the things that affect people then maybe people can get... So there are kinds of things already in supermarkets where they have like autism friendly hours, where the lights and stuff, I guess that's mainly geared at research or came out of research with children. Maybe other things that perhaps could come out of research with adults.

Keren (10:54)
Yeah, I agree. Especially because I agree, I think a lot of it, is it on children, and actually like knowing more of that, but you know, actually just firstly, highlighting that these things do persist into adulthood, and the adults are also finding their environment challenging. And, you know, kind of understanding more about that, I think is, you know, brings a lot of awareness that is really, really important.

Louisa (11:18)
Yeah. Yeah, very important. Sounds good. What was I going to ask next? Oh, I think we do have time for this one, which is good. So if you were to kind of continue from this project, what would you do next? Or, if you did it again, would you do something differently?

Keren (11:33)
Yeah, I think I mean, I'm still kind of continuing down, looking at sensory reactivity. And I think, so I've been in a related study I've been assisting on called the Sensory Street study, which is headed by Cathy Manning. And that's examining more about what environments that are disabling for autistic people with sensory reactivity differences. So, you know, which kind of takes it less on the onus off of the person's own own needs, but also looks at the environmental challenges. And I think that so far, we've been learning a lot more about kind of the social and environmental aspects are also associated with sensory experiences. And I think there's some kind of really exciting research directions that can be developed from that as well. So yeah, it's nice to kind of bring that together with the other the other research that I've just been talking about as well.

Louisa (12:31)
This one that you did was kind of the end of your PhD, wasn't it after you've done more research throughout your PhD about it, and Teresa (Tavassoli) as well, your old PhD supervisor came on and spoke about one of your previous papers in sort of, I think it was sort of February time on this same podcast, so yeah,

Keren (12:45)
yeah. Yeah, exactly. Because most of it, most of my PhD was on looking at links between sensory and mental health. So I think that's kind of where, where my my background is. And yeah, so doing this kind of this paper towards the end of my PhD was nice to kind of look at the wider impact of sensory differences. And although obviously, that mental health came through as kind of being really important, it was nice to see like, or learn more about other factors that are also really important. And to highlight that it again, it's more complex, it's not just sensory causes anxiety, or, or, you know, it's the if not the, the relationships, not that simple. So, yeah, lots of lots of important things, research directions to take forward.


Louisa (13:28)
Yeah. And it's only it's not that long ago is it that sensory differences were even added to diagnostic criteria and more recently, there's lots of research into sensory processing in autism? I think it's also one of the research priorities that was identified.

Keren (13:43)
Yeah, absolutely. Well, so. Yeah.

Louisa (13:47)
Yeah. It's interesting to listen to and to learn about your research a bit more as well, because we have I don't think we've had as much of an in depth conversation about your research just sitting next to each other in the office. But yeah, interesting. It's really good. Is there anything else you'd like to add before I ask my final question?

Keren (14:08)
Yeah, I don't know. Actually, I feel like we covered quite a lot the paper even though it's quite a complex paper, like there's Yeah, the those are kind of the the key, the key points, but I think that I mean, I would just like to say that obviously, my collaborating on this with Teresa and Sarah was they, you know, we made a really good research team and getting all the all the feedback from the autistic adults throughout this research process, I think made this paper and this study as strong, and I may be biased, but I feel like it's I think it's a good piece of work and I'm very proud of it. And I think that um, we all are and yeah, I think it was fully shaped by the community. So I think it's just to me really solidifies how important it is to co produce research with the autistic community because It does, it makes you learn a lot more. And also it makes your research really reflect what people are experiencing in their real lives. And I think that that is important, rather than producing research that maybe doesn't quite live up to how people are actually experiencing it.

Louisa (15:16)
It really helps people kind of put their own, like autistic people to put their own priorities for research into research that's being conducted as well, if they're allowed to have an input into what's going on, and then kind of shape how the research is formed, it's actually going to be useful for them, because it's, you know, something that they're interested in being researched. So yeah, participatory research practices are awesome. I'm also that's about those.

Louisa (15:43)
This is the end of the podcast conversation, but a final little question. You're an early career researcher anyway, so early on in the stage of your research, but there's probably some other students listening people that may be a bit earlier on in their careers. Is there anything that you'd maybe like to say to them? Or advice?

Keren (16:00)
Yeah, I guess. I mean, I was very lucky with my PhD supervisor, Teresa, who is she's good with the work life balance. And I feel like, to me, that's really important. And I, I guess the most important thing is, for, if you're a student, or an early career researcher, or at any stage in academia, is to always put your health and well being first and to not feel guilty about it. Because it's really hard to succeed and thrive and you're burning yourself out all the time. And so yeah, I feel like I've I've learned for now working with my amazing rentals, that it's actually okay to say no sometimes and not take everything on. I think that's especially what we're working at home a lot more, as we have all done over the last couple of years that that distinction between work and home has been a bit blurred. And that yeah, it's a really, it's good to nurture your your work life balance and to preserve your evenings and weekends and not feel guilty about it.

Louisa (17:03)
That's very good advice! Also, advice should probably take myself, but

Keren (17:08)
Just saying Louisa.

Louisa (17:08)
Yes, advice I should also take. I mean, that's advice that I guess could apply to anybody at the moment, because so many people have been working from home.

Keren (17:17)
Yeah, I know, it's so much harder to catch your end of day because usually you're like, Well, I've got to get home. I can't you know, get in the car, get on the train. Well, however you're doing it you go home. Whereas like your staff or your laptop, all you have to do is close your laptop. And sometimes it can be really hard to do that. And like when it's still maybe in the room with you

Louisa (17:37)
Mine, it's just a computer that's on that's there all the time

Keren (17:40)
Exactly. If you've got that, that it's just staring here. Yeah. So I think that as I said, I was very I've been very lucky with with by mentors that it's been kind of enforced on me. But yeah, I would always I would just say, just to not have the guilt about doing either as important.

Louisa (17:59)
Very important advice. Follow it. Definitely. Thank you so much for your time today. Keren.
That was really nice.

Keren (18:12)
That was lovely. You're welcome. Thanks. I've had a great time.

Louisa (18:15)
Yeah, I did. It was great. But yeah, for anyone listening as well. Thank you for joining us. You can find more about Keren and her work by following the links in the podcast podcasts or a description on Buzzsprout or in your podcast app. And join us again at the same time next week for another episode of PsychologiCALL

Louisa (18:30)
Bye!