Thursday, October 3, 2019

Autism and Self-Injury: Talking With Dr. Rachel Moseley at INSAR 2019

Dr. Rachel Moseley and Carol Greenburg
[image: Photos of two smiling white women wearing glasses posing together.
Left, Rachel Moseley has shoulder-length light brown hair.
Right, Carol Greenburg's hair is in a platinum bob.]
Content note: This interview discusses self-injury and suicidal behavior.

Oftentimes the most rewarding findings at INSAR, the annual meeting for the International Society for Autism Research, emerge during the pre-conference sessions. We went to the 2019 pre-conference on autism and mental health and were impressed by Dr. Rachel Moseley's presentation on self-injury in autistic people without intellectual disability—and are grateful that Dr. Moseley was able to make time to talk with TPGA editors Carol Greenburg and Shannon Rosa about her research.

Shannon Rosa: Dr. Moseley, can you first tell us a little bit about yourself, and your background and affiliations?

Dr. Moseley: I’m a researcher at Bournemouth University. I did all my studying and my PhD at Cambridge. In those days I was looking more at brain differences and differences in the autistic brain, and did quite a bit of research on brain connectivity and so forth. I’ve also done a bit of research on sex differences, and various things. [laugh] So I find myself now at Bournemouth University, and I’m more interested now in mental health, also physical health, suicide, and, as you say, self-injury.

Rosa: Why did you make a choice to study people without intellectual disability?

Dr. Moseley: I think, insofar as it relates to self-injury, autistic people without intellectual disability are underserved. They’re a very misunderstood group. If you were to do a literature search on self-injury, you’ll find a lot of studies and opinions on self-injury in people with intellectual disability, but there’s very little information out there about whether autistic people without intellectual disability also engage in self-injury, and whether it would be for the same reason for autistic people with intellectual disability, and whether it would look the same as in people in non-autistic groups.

There is one very good paper by Brenna Maddox, and it was the only paper that looked at self-injury in an autistic group without intellectual disability, and it felt like, there were a few things in the paper that I really wanted to know more about, and so I thought this really needed to be further looked into.

Rosa: Okay, thank you. Can you please tell us about your research sample and what your selection criteria were and why?

Dr. Moseley: Certainly. So, I approached the autistic community with quite an open recruitment strategy, really. I did my recruiting partly online, and partly through social media, and partly through the recruitment database of the autism research center. And so, I really let it be an open invitation, really, for any autistic person, male or female or nonbinary, anything, who self-injured or who didn’t self-injure. And the sample I ended up with in the end, interestingly, was predominantly more female participants than males, which is unusual for autism research.

Rosa: Why is that unusual for autism research?

Dr. Moseley: Well. There’s, there’s a very well-known gender bias in autism research, where studies tend to include more male participants. Men and boys are more likely to be diagnosed.

Something I think is a very interesting question is, this study was obviously pitched as one about mental health. And, in non-autistic people, I think there’s a bit more stigma for men around talking about mental health. So I wonder if autistic men are similarly subject to that stigma, and if so, that raises very worrying implications. Maybe autistic men are more vulnerable for not being able to come forward, and talk about these things.

Rosa: Can you tell us what the primary findings of your study were?

Dr. Moseley: Sure. I’ll try and summarize them. We were interested in finding out more about the features of self-injury in our group, and finding out how people felt about self-injury, and also finding out what kind of things predicted self injury.

In terms of features, we found—very much like the Maddox study I mentioned earlier—that autistic people without intellectual disability self-injure in ways very similar to non-autistic people, for similar motivations, similar methods, similar age of onset, and so forth. In terms of predicting self-injury, we found a lot of things but I can summarize them. The things that seem to set apart current self-harmers and historical self-harmers from people who have never self-harmed were things like alexithymia, which is a difficulty in identifying your emotions and also in describing them to others. So people who have self-harmed had a lot more difficulty with alexithymia than people who have never self-harmed.

Carol Greenburg: Interesting.

Dr. Moseley: They also tended to have higher levels of anxiety and depression, and also higher level of sensory sensitivity.

These things were all predictive of self-harm status. What we also looked at was perceptions of self-injury in autistic people, how people thought about their self-injury, and also the kind of things they thought were important to help people and they wanted other people to know. So, a few of the things that came across were that people highlighted the importance of patience, of empathy, of non-judgment from medical professionals, professionals, and also from family members—the need for support, love, caring, and passion.

And one of the things that was very interesting was a kind of dichotomy in data between some people who were very distressed by their self-injury. They expressed for instance, “no one wants to do it,” “it’s like an addiction, not a choice,” “it’s a sign of how unwell I was,” Whereas other people were very matter-of-fact and thoughtful about it. They said “it’s a means of expression, much like any creative or artistic outlook”—that is a quote.

One person said to me, “it’s almost a positive thing because it helps me get through things, and stabilize, and reach homeostatis, which was really interesting. They said, “I can either not do the stressful thing, or do the stressful thing and use self-injury as a means of getting back to baseline afterwards.

Another quote was “Sometimes I get so overwhelmed that I don’t know how I can get through a day, so I go, I do self-injury, and seeing the self-injury helps me calm down so I can calm down and then go on with my day.” So, some people talk about it in this very functional way, whereas others are very distressed. So it was very interesting, this dichotomy, and we’ve done a follow-up study, which is currently under review.

Greenburg: What factors made somebody okay with self-injury, as opposed to what factors made somebody completely dysregulated during self-injury? Did you find out why?

Dr. Moseley: A substantive question. I think there’s so much more to be looked into. People self-injure for very different reasons, and one of the things we were very curious about, in the follow-up study, is whether types of self-injury, whether certain reasons of self-injury are more dangerous than others. Because, you see, we wondered if people who see their self-injury as very functional, who thought of it as a tool, we wondered if that kind of self-injury wasn’t as related to suicidality as the people who were very distressed about it.

But that’s certainly not what we found. We found that regardless of how people think about self-injury, it was related to their suicide risk. But we also need to dig more into this, why some people get very distressed about their self-injury, why others don’t. I suspect it’s related to the reasons they engage in it. For instance, some people were engaging in self-injury as a means of regulating high-pressure emotions like frustration, anger, or agitation, whereas others were engaging in self-injury to regulate what we call low-pressure emotions, which are depression, numbness. These were what was happening when people were saying, “I self-harm to feel something,” and there’s some suggestion that that’s more related to suicidality.

So, people who are using self-harm as a means to break through depression, that’s a red flag. And certain methods of self-injury are also more related to suicidality than others in autistic group[s].

Rosa: So the next question was going to be whether there were any findings were surprising, but it sounds like that dichotomy was very surprising. Were other findings similarly unexpected?

Moseley: I think the one that was most eye-opening to me was that no matter how a person feels about their self-injury, even if they view it in a very methodical, matter-of-fact way, this preliminary analysis suggests that even if a person doesn’t mind about self-harming—even if they think about it as no problem whatsoever—it still doesn’t make any difference to what risk they are for suicide. Of course we need to go deeper, understand more, but this, to me, was very stark. And it’s consistent with theoretical models of suicide risk, where, basically, what self-injury does is makes a person capable of taking that next step through, through, ah, increased tolerance for pain, and…

Greenburg: …and making them less scared of death.

Moseley: …by self-injuring they therefore make themselves more capable of taking that next step. So no matter how they feel about their doing it, just self-injury may increase their capacity to suicide.

Rosa: Wow. That is. [Pause.] That is really…

Moseley: Frightening.

Rosa: That is really worrisome. Well. How has your study been received so far?

Moseley: It’s been really positively received, I think, though mostly by the autistic community. It took a long time to publish, so in the meantime I made video summaries of the findings, and was in quite close contact with the groups of people I recruited locally. People were really fascinated. One gentleman learnt a new word for something that he had been struggling with for so long, which was alexithymia [the inability to identify and describe one’s emotions].

Rosa: Oh, my goodness.

Moseley: He’s never known it was a condition. And just knowing about this was so enlightening for him. It helped him so much. It's been so rewarding for me to hear how positively our research been received by the autistic community.

Rosa: How would you like the findings of your study to affect the approach of autism and medical professionals, in terms of supporting autistic individuals in the real world?

Moseley: I think the study raises very worrying implications, as you’ve said. Originally, I was thinking that it might be very helpful for professionals to be able to see particular red flags, that if a person also has self-injury, that might mean, of all people who are self-harming, there may be some who are at particular risk and therefore should be helped.

Of course, the findings didn’t support that, so, in terms with where we go with it, it really suggests that no matter why someone is self-harming, we need to be very, very attentive to them. We need to help them. We need to give them support. Obviously we need to look into this more, because this is very preliminary analysis. And there are, like I said, there are certain types of self-injury that are more dangerous than others.

But, yeah, the findings really told us that we need to take it very seriously indeed. And if clinicians or professionals find out that someone is self-harming, they do need to be very attentive to it.

The other important thing that came out of this research was the voices that we heard: what self-injury means to autistic people, and what they think would be helpful for them. Because what really came across were assumptions made about self-injury, for instance that people had a personality disorder, or that they were attention seekers—those were very distressing to them. They found it was very difficult to communicate with therapists and doctors, because they weren’t getting that understanding.

One person said, “It’s as if you’re speaking a different understanding, and the two worlds don’t meet.” So these are really important things for doctors and clinicians to hear.

And just for family members and loved ones generally, there is a need to be empathetic, compassionate, nonjudgmental, calm. Don’t freak out, don’t get angry with them, don’t get emotional, because it really won’t help.

Rosa: Okay. Wow. So, what are your next steps now? You said that you already have another paper in the works?

Moseley: We do! We have another paper in the works, and we have a couple of ideas sort of pending on grant applications,

But we have some existing studies going on. One thing we’re looking at is measures of stress. We’re interested in whether lifetime stress and certain types of stress are especially associated with self-injury, whether other variables like uncertainty and intolerance of uncertainty play into the picture.

We're interested in other angles such as the impact of how a person moves from self-injury to suicidal acts, and just trying to build a bigger picture with stress, alexithymia, intolerance of uncertainty, so we can understand about self-injury and what moves people on to actual suicide attempts.

Rosa Well, thank you so much. Is there anything else you’d like to add, or you, Carol, would like to ask?

Greenburg: Yes. Is it making too many assumptions to wonder whether there’s a correlation with self-injurers and sensory-seeking tendencies?

Moseley: This is a really, a really interesting question and I can’t answer it at present because I haven’t done the analysis.

Greenburg: Is that something that might come up in future studies? It seems like a good follow-up.

Moseley: It could do; it sounds like you think that’s a very good avenue. You know, one thing I have to say—even though I can’t answer that—but I was very interested to see sensory sensitivity play such a role in self-injury as a predictor, and one of the things that came up in the follow-up study is that engaging in self-injury for certain reasons, such as to break though depression, was highly related to suicide, and engaging in self-injury for sensory stimulation was also highly related to suicidality. But this doesn’t quite speak with sensory sensitivity, maybe. We need to look into this more.

Sensory seeking, engaging in self-injury for the reason of sensation-seeking, may not sit with those people who are sensory sensitive. They may not be sensation seeking. So we need to delve into it further. But that is such an important angle.

Greenburg: Most autistics have some kind of depression simply as a result of living in a world that is not built for us. It’s not intrinsic, but it’s prevalent.

Moseley: You’re so right, and that is why it is not surprising that sensory sensitivity is higher in self-harmers, because, basically, sensory sensitivity affects whether an autistic person is a self-harmer or not. Those who have sensory sensitivity are much more likely to be a self-harmer.

Greenburg: Sensory avoiders or sensory seekers?

Moseley: Sensory sensitivity. So we measured several aspects of sensory experience. We measured sensory seeking, sensory avoidance, and sensory sensitivity. The difference between the last two, I think, is that people who score very high on sensory avoidance try to get away from sensory situations, people who are very high in sensory sensitivity may not necessarily try to get away, but they just just experience the sensory overload. People might be high in both of those those things, but the one that was related to self-injury was sensory sensitivity. Does that make sense?

Greenburg: Yeah. It makes sense.

Moseley: It’s scary; it’s all very stark.

And I feel with you. It’s such an important area that I am devoted to. I want to take it further. And I do feel so pleased to see mental health and suicidality and self-injury be so emphasized at this year’s INSAR. This is wonderful. I’m so pleased to talk.

Rosa: Yeah, me too.

Greenburg: Thank you.

Rosa: Yes, thank you Dr. Moseley. I’m so glad that you could be here.

Moseley: Can I say one last thing? Literally one last thing, because you asked me if I could say anything else, and it would just be my immense gratitude to my participants, without whom this could not have been possible, and how courageous it was for them to talk about such a personal thing. So that is just my last message.

Greenburg: Wonderful. Well, thank you, very, very much.

Moseley: Thank you.

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Interview transcription by Sara Liss.