On sensory reactivity and anxiety in autism, with Teresa Tavassoli

Since 2017 Teresa Tavassoli has been working at the University of Reading, first as a Lecturer and since 2019 as an Associate Professor.  Her research is dedicated to deepening our understanding of sensory reactivity in autism and its variation across the population. Her work is using multidisciplinary approach to identify reliable ways to measure sensory reactivity as well as to elucidate underlying mechanisms, and examine links to mental health symptoms.

You can find out more about Teresa's work by checking out the Centre for Autism's webpages and you can follow her on twitter here.

The paper discussed in this episode is:
MacLennan, K., Roach, L., & Tavassoli, T. (2020). The relationship between sensory reactivity differences and anxiety subtypes in autistic children. Autism Research, 13(5), 785-795.

Many thanks to Naomi Meiksin for editing the transcript for this episode. 

Transcript

Intro: 0:09

Oh, it is recording. I see the little figure. Okay, great. I will do my little spiel and then I'll introduce you. Nice. Okay. Here I go.

Sue: 0:16

Hi everyone, I'm Sue from the Salvesen Mindroom Research Center at the University of Edinburgh. And, I'm recording another episode of our PsychologiCALL podcast. So this is a podcast that we started during lockdown. Um, and basically what we're trying to do is make a bit of an evidence-based contribution to the conversations that people have been having about child and adolescent wellbeing and development and learning, which seems to have become even more, um, present in our public discourse at the moment during this coronavirus pandemic. So today's PsychologiCALL is with Teresa Tavassoli, who's an associate professor at the University of Redding, and she's going to talk to me about a paper, looking at the relationship between sensory reactivity differences and anxiety, subtypes in autistic children. So hello, Teresa. Thank you very much for joining me. How are you today?

Teresa: 1:14

Good, thank you, Sue. And thank you very much for inviting me to this podcast.

Sue: 1:18

Not at all. I'm delighted to have you on. Um, so could you start by just telling me, um, something that you think you discovered in doing this piece of research, please?

Teresa: 1:31

Yes. So, um, in this study, which was co-founded by Autistic and MQ, we looked at the relationship between sensory reactivity and anxiety in autistic children. And what we found was that sensory hyperreactivity- so this might mean that anyone who is overly sensitive or overwhelmed by, similarly, like, sounds. So essentially hyperreactivity was linked to anxiety. Specifically, to physical injury fears and specific phobias. And, um, that in some ways makes sense because phobias, often in autism seem, to be related to specific sensory stimuli. So someone might report they might not like to go into a park because there might be a dog barking and they don't like the sound of this. So the first time you get sensory hyperreactivity being linked to specific phobias, even when we take into account other autistic traits. And another interesting finding we had was that we actually found a minimal agreement between different measurements for anxiety, which you see for other psychological constructs as well. But here we basically, we used the parent report as well as the self report for anxiety, but they didn't line up too much. So, um, for example, general anxiety parents reported, in 74% of the cases, that their children have anxiety symptoms. However, only 17% of children actually said that they feel anxious. So these two things were, were our main findings- discoveries.

Sue: 3:00

Amazing. So I think for a long time, there's been a feeling in the autistic community that as a research, um, uh, community, we haven't paid enough attention to kind of sensory reactivity and sensory profiles, right? Um, so I wonder, do you agree with that? And, you know, could you tell me a little bit about what made you decide that that sensory reactivity was an interesting component to study in this context?

Teresa: 3:27

Yep- so, um, actually I started to be interested in the topic of sensory reactivity while I was an undergraduate student in Germany. And, um, I worked in a psychiatry there and there was a young woman with autism and she seemed to be perceiving the world very differently from the way I perceive the world. So for example, for touch, she didn't like to wear certain clothing, so any wool clothing she would just rip off. She didn't like wa- running water or taking showers, just really difficult for her. And she had few to no words. So for her, it seemed to be difficult to tell me what is frustrating for her. So I started to be interested in the idea that we all perceive the world differently. Um, but for some people it seems to be overwhelming, has a stronger impact on daily life than for others. And so I started off just being- over 10 years ago, then, when I did my PhD- and just to see w w how is sensory reactivity affected? Is it affected in, in autism? And, um, we found that over the years, that around 60 to 80% of individuals with autism seem to be hyperreactive, so, being overwhelmed by their environment, or hyporeactive, not, not as responsive or seeking, so seeking out stimulation. Um, but now more recently, I've been more interested in the link to particular mental health. And we, we kind of know about sensory activity is common. And we also know that mental health or anxiety is, is about 40% of autistic individuals do show anxiety symptoms, but we don't really know the link or how it's co-developed. So that's, that's more what I'm interested in at the moment.

Sue: 5:09

Amazing. And could you tell us a bit more then about how you did the study? So I know you mentioned that you use um self-report measures and parent report measures for anxiety. Did you measure sensory reactivity in the same way?

Teresa: 5:25

So usually yes, I do. I think that that's one take home message potentially from this process as well, that I would say, if possible, try to use multiple measures and combine them to understand the context more. So here we did use for anxiety, we, we used a parent report Spence Anxiety Scale, and we use the computer game, the Dominic Interactive, which is the mental health screening tool and the self report where children see different scenarios: a character, Dominic, and Dominic says"I feel sad when my parents leave", for example, for separation anxiety. And then the child has to say,"yes, I feel like Dominic" or"I don't". And for sensory, we usually use a combination of observations and, um(as well as parent reports) however, here, because we had a very wide range of kids and the age level they were, right, we just, we, in the end we only used the parent report, so the Sensory Processing Scale Inventory, which was developed by occupational therapists, Lucy Miller, and Sarah Schoen, and it's asking about hyperreactivity. So things like my child is bothered by light, and hypo reactivity and seeking- so for seeking could be something"my child has difficulties disengaging from a spinning ob- like, looking at a spinning object. So, um, we, we use that because it measures hyper, hypo and seeking. Um, but the research going forward on my current work is always looking at a parent report, a parent interview, and an observation for sensory, but not in this, not in this study.

Sue: 6:59

Um, could you just tell us a little bit more then about those autistic children who took part? So, you know, w w what would they like? You mentioned a wide age range.

Teresa: 7:08

Yeah, so we, um, we had 41 autistic children, and they were age 3 to 14, and we had 27 boys and 14 girls. And we also, for the cognitive level, their IQ ranged from 77 to 140. So we had quite, we tried to have a large range of, um, yeah. Of age and also, um, cognitive levels. But for this study, most children did use verbal language. Um, there were only a handful who had few to no words. So usually I try to have, um, I do try to include everyone, but here, because we had the computer games, the kids were a little bit more talkative than usual.

Sue: 7:55

Sure. But that's it, I mean, that's great to work with such a kind of variable group, right? Because I think this is a mistake we make a lot in autism research specifically, but also in a lot of kind of research with clinically defined populations is that we re- over refine our research samples so that they don't bear any relationship to real people, you know, to the, to the range of experiences around in the real world.

Teresa: 8:23

Yeah, I agree.

Sue: 8:25

Yeah. Yeah. True. Um, and so in terms of analysis, um, I mean, was this kind of straightforward correlations between measures? Did you look at the effect of age, for example, across that nice, diverse sample?

Teresa: 8:40

Yes. So definitely. I think that's a, that's a good p oint. So the analysis was, I didn't actually c onduct i t. I just[inaudible] w ith my PhD student, Karen, who is brilliant and, u m, all, like she ran all the analysis. And what we've done was, we wanted to look at the relationship between sensory and anxiety. U m, so first of all, I think we, which we always do, is we look at just descriptive: what does the data look like? U m, are there any o utliers? Is, is the data normally distributed? I s there a good range of data or have all our kids been very anxious or not anxious at all? Um, and there were no outliers in the s ample and a s mentioned, because we had quite a range of age, so we had, u m, also different scales, for i nstance, it's the same Spence Anxiety Scale, but they use slightly different items because some kids were very young(so p reschoolers) a nd some kids were already teenagers. So we needed to, u m, h ave a standardized way of score. So we Z-scored all the scales and st andardized t hem to combine them. And what- you mentioned age- so I think it's always important to see if you have a very heterogeneous group, which, which I think as we di scussed, we want to have. So you don't want to have, I think it's good to include ch ildren w ith different verbal skills, with different age levels. But, u m, w e did check if a ge has an effect or cognitive skills and it didn't in t he sample and I found that before as well. Um, a nd then we did also, given that we looked at su b s c ales o f anxiety, which ha sn't r eally been done before(it's broadly with anxiety, but we looked at general anxiety, specific phobias and so forth) and we did also correlate with he r. We d i d a l so r u n m ultiple comparisons th en. Um, a nd what we found was that, so H d idn't have an effect, IQ didn't have an effect, but autistic traits were linked to being hy perreactive. So the more autistic traits, the more hyperreactivity and the more anxiety. So we did, u m, r un also pa rtial c orrelations, taking autistic traits into account. And there were, before that hy peractivity w as linked to separation anxiety, as well as, u m, s pecific ph obias, but after correlating fo r a utistic traits an d s pecific phobia still stayed the same, but the separation anxiety wasn't significant anymore. So there seems to be something going on with that link as well. But ra ther s t raight f o rward a nalysis, I wi ll s ay.

Sue: 11:08

Well, you know, there's many to overcomplicate these things. I mean, I think it sounds like a very thorough process. So, so I want to ask about what you think we can learn from this, but in terms of sort of practice and that, you know, the sort of causality here and so on. But before I do that, I just want to pick up on the second result that you shared with us right at the beginning, which was that the parent report measures of anxiety and the self-report measures of anxiety didn't line up. And, if I remember correctly, I think the parents were, um, well, this is my question, I suppose, is were the parent overestimating or were the children underestimating the degree of anxiety that they experienced? How do you interpret that, that mismatch?

Teresa: 11:55

Yeah. So I think this is, it's an interpretation we don't know. But I think it's exactly what you said. So I think on one hand, it might be difficult for a child to report on their anxiety level. So it might be difficult to identify the emotions, especially for children. This measure starts from around the age of six. On the other hand, I also do think that parents might over-report a little bit. And I think potentially it might be because it's just a heightened awareness of, um, parents, when you have an autistic child that they're often so informed and maybe a heightened awareness, a lot of knowledge might also lead to the fact that you may be over- reporting? So, especially, let's say for general anxiety, that there was such a difference: so 74% of parents said"my child has generalized anxiety", but only 17% of autistic kids felt they do. And look at the agreement between different rates as the self versus parent report is only 33%. So in, let's say a third of the children, parents said one thing, and the child's said the same. However, in the, the, the two thirds, so 70% of the time, they didn't agree. And I don't think it's specific to anxiety measures. I think you see that across different constructs. So we see it as well for sensory that often parents, um, with who have kids with a new developmental condition, um, might be very aware. And also they do see the children and so many different areas and report more symptoms than we see when we test them to symptoms directly. So it's something that came across before as well. But I think, yeah, exactly what you said that might, it might be hard to identify own emotions for children and parents also have a heightened awareness and report more than we see.

Sue: 13:45

Yes. It would be interesting wouldn't it then to try and capture alexithymia potentially as part of that, right? So you know, where the high rates of alexithymia make it harder for people to engage with some of these self-report tools in an accurate way. So of course, I mean, that's, you know, that's a big question, isn't it what's accurate, right? Where's the truth?

Teresa: 14:11

I feel if- there is no Teresa!- I feel you want to look at anxiety or you want to look at sensory. And I think it's best to use multiple measures and see if they're correlated somehow so that there are for sensory, for example, there are correlated direct measures, observations and questionnaires. So that's good. They're measuring somehow something similar, but then I would say combine them so, standardize scores and combine them. I like to get a better understanding of, of sensory activity across what parents see, what children feel or show themselves. Yes, what I would do.

Sue: 14:49

That's amazing. So that's some, some useful lessons for researchers, but what do you think, what do you think are the lessons from this work for, um, sort of the autistic community, or maybe for parents or teachers, you know, what, what would you extrapolate from this, do you think?

Teresa: 15:07

Um, so I think that that's, what we see or learn from this is that sensory activity is important and the way we perceive the world around us has an impact on life and has an impact on mental health and anxiety. And here we saw very young children, like some, some of them are 3 and they have more studies now for three to five year olds and we already, in that young age, see a link. So, um, I think if you're aware of the link between sensory activity and the impact or the link with anxiety, that's important. It could also have clinical implications. For example, if we, if we understand this link, and, for example, sensory activity can be supported quite early on with occupational therapy, for example. However, with anxiety, often families have to wait until the child is six or seven before they get any support. But if we know that the child who is quite hyperreactive to the world- they don't like sounds, they don't like touch, they might not like flickering lights- there is a link to anxiety. I think if you have more of an kind of eclectic approach to supporting the child, you could, you could just help them with sensory, but also maybe with reading, taking- so techniques that might help for anxiety to prepare them. I would say that that's one, one aspect. So, there is an impact, be aware of it, and try to support both. Um, yeah.

Sue: 16:29

Yeah. And, and I think the other thing, so that's great. The other thing, I think this adds just conceptually, and this is something that I think is a bit of a pattern in, in some of the autism research that's true at the moment, is you know re-conceptualizing autistic anxiety as a sort of very logical response to a world that is, is you know potentially painful in, in a sensory way or, or, you know, is deeply upsetting. So we can often characterize, don't we? Various, um, uh, features of autism, but also these sort of co-occurring conditions like anxiety as, um, you know, a sort of, almost like a coincidental pathology, you know, like,"oh, you're autistic and you happen to be anxious as well" but actually, you know, this relationship between sensory reactivity and anxiety highlights, how, how much it makes sense for autistic people to feel anxious when they're constantly encountering a really challenging sensory world, right?

Teresa: 17:38

Yeah, no, I think, and that's important as well- I think often in educational settings a child's, um, said,"oh, they have behavioral issues" and then when you actually look into it, it's, it's often, um, like my daughter's nursery setting their, um, assumption of autistic they, it's, it's often at the same time when the gardener is there and there's a loud sound when they're cleaning outside. The child doesn't have behavioural issues, it's just really hard for the child to deal with that sound. It might be painful, as you said, and they can't communicate that that is the issue. And, um, I think if, if there's more awareness that it's not someone trying to be challenging, but it might be because there's a loud sound and helping equipping kids with strategies to deal with it, I think would help. And, and the other aspect, what you just said with anxiety that it might be a bit more specific in autism, which I think is quite important as well, because it's not captured enough, I think with current measures. So we also tried a direct observation of anxiety where people have to put the hand in the mystery jar, or there's a spider on the floor. And that works really well for children who might be non-autistic. However, we didn't, we couldn't really use the data because the kids were very excited about the spider and just played with it- they put their hand in the mystery jar and we weren't even fast enough to take the time it takes them to explore these toys. So I see they need to understand anxiety and autism better. Um, there needs to be slightly more specific measures. They have to be validated in this group of kids. Um, and there are some, there are definitely people who are working on this, which I think is really important.

Sue: 19:18

Yeah. That's just so interesting, that example. That's great. Um, so one final question then, um, is I realise now that I didn't warn you about this before we started recording. So, um, I'm going to put you on the spot a little bit because, um, one of the things we've been thinking about in the podcast is sort of early career researchers and students who might be listening and whether you had any sort words of wisdom that you might like to impart to them as they are early in their academic journey, um, from your position of lofty establishment.

Teresa: 19:55

Wow, uh,

Sue: 19:56

What would you say to them?

Teresa: 19:56

Yeah! And I'm only recently slightly more established so I don't really feel I'm quite there yet, but no I think, from, from this story, the person's story I shared before about how I got interested in this, um, I think it's important that you follow questions, research questions that interest you. And, um, I personally, I think you can learn a lot from the, if you are interested in autism, you learn a lot from the autistic community. And I think you have to work together to ask the right questions. And then I would say, um, always ask the questions and have ideas. Um, and if you, if you have that, I think you just try to follow them and see where, where you get it. And I think that, that there will always be more questions, but if you, if you have questions and if you have ideas I think that's, you need to be, be a scientist.

Sue: 20:48

Yeah. That's great. Because, um, questions and ideas, you know, they're free, right? So that's, that'd be marvelous. Well, thank you so much for your time, Teresa. It was great talking about this piece of research with you. I'm really pleased that you were able to come on the podcast and for anyone listening, you'll be able to find out more about Teresa's work by following the links in the podcast description. Thanks so much, Theresa. Bye!

Teresa: 21:18

Thank you so much! Bye.

Outro: 21:23

Okay. We did it. I thought that went quite smoothly!