Interoception

I attended The Autism Show’s web seminars for adults yesterday. It was a pretty interesting day, with some fascinating and heartfelt accounts of people’s experiences. 

One thing that came up more than once was “interoception”. This is a sense, alongside the traditional five (sight, hearing, smell, taste and touch) and the one related to balance (vestibular) and the sense of self movement and body position (proprioception). Interoception is simply defined as the sense of the internal state of the body and its processes such as heartbeat, digestion, muscular effort, and anything else that is going on inside. Interoception is commonly linked to our sense of wellbeing. In fact, referring back to my last post, it may be the most direct answer to the question: how do you feel? Since I invariably find that a very difficult question to answer, I decided to look more deeply into interception and its relationship with autism. 

Now, I should say that my vestibular sense is pretty distorted already due to Ménière’s Disease, which I have had since approximately 2007. Also, I have always had a problem with proprioception. This manifests most obviously as a dislike of large spaces whose corners I cannot see, because I use room corners to position myself. But I was most interested in the extent to which interoception overlaps with alexithymia, which is an inability to recognise and describe one’s own emotions. I am often aware that I am experiencing an emotion, but I cannot tell what it is and how it might be expressed. Does this come from distortions in my interoception?

I have quickly and superficially surveyed the research literature on this topic. It is quite small - a mere handful of papers - but very interesting. The most useful paper is a review of the field which summarizes the various published studies of autism and interoception (DuBois et al. 2016). This finds that “[...] interoception is an aspect of a sensory processing abnormality found in ASD that has not yet received much clinical or neuroscientific attention” (ibid. p. 108) and calls for more research. One key paper distinguishes between interoceptive accuracy, which is objectively measurable, interoceptive sensibility, which is a subjective belief about one’s own internal workings, and metacognitive accuracy, which is one’s own insight into one’s interoception (Garfinkel et al. 118).

It’s clear that this field of research is still developing, so any results are fairly tentative at this stage, but from a purely anecdotal perspective, I would say that my own lived experience tends to confirm their conclusions that there is a difference between these three and that some autistic people experience a “compromised interoceptive channel” (ibid. 123). Well, this one does, at any rate, and so did the majority of the twenty participants in their study. I would say that I have diminished interoceptive accuracy but enhanced interoceptive sensibility, resulting in a dislocation between the two that has consequences for emotional processing. That explains some of the minor but troubling  physical problems I have with some body functions and the resulting anxiety that attaches to those.

It makes sense to me that since I have issues in relation to the more familiar senses, I should have similar challenges with regard to this less well-known one too. I’m going to continue researching this, because I think it may become very valuable in trying to figure out ways to self-manage. I don’t hold out much hope that the medical profession will be up to speed on this, but you never know. Perhaps I’ll mention it to my GP next time we have a consultation…

References

Denise DuBois, Stephanie H. Ameis, Meng-Chuan Lai, Manuel F. Casanova,

Pushpal Desarkar, ‘Interoception in Autism Spectrum Disorder: A review’. Int. J. Devl Neuroscience 52 (2016) 104–111.

Sarah N. Garfinkel, Claire Tiley, Stephanie O’Keeffe, Neil A. Harrison, Anil K. Seth, Hugo D. Critchley, ‘Discrepancies between dimensions of interoception in autism: Implications for emotion and anxiety’. Biological Psychology 114 (2016) 117–126.

Accessible Home Working

I was recently asked to comment on a document about accessible home working. The aim of the document was to provide advice to managers and staff about how best to make online working in the university accessible for people with disabilities. It was already a pretty good document, but I like to think I enhanced it with my comments.

There were a few items worth blogging about. The first was to do with good practice in writing emails. Like most academics, I receive hundreds of emails a week. It’s quite surprising to what extent I encounter the same issues in email that I find when dealing with people face to face. I am forever trying to figure out what people really mean, only to discover later that they didn’t really have any particular meaning. I may understand this intellectually, but I find I am unable to recognise it in the moment, so I easily misread or misunderstand the writer’s intentions. I have in the past sent emails that have got me into a lot of trouble, so I am perpetually terrified of making a mistake. At the same time, I still make mistakes! Needless to say, this increases anxiety.

A lot of it has to do with perceived tone of voice. I find that I often ascribe a tone of voice to emails that I perceive as harsh or abrupt. Often this is not the intention, but my anxiety is greatly increased because I get this impression. Usually the impression can be easily offset by a simple change of tone. To give you a simple example, an email that begins “Hi ...” is already more friendly to my ears than one that begins more formally with “Dear ...”. This is probably a result of history. An email seems like a more casual, less considered form of communication than a letter and the use of ‘hi’ seems to acknowledge that, not least because it involves less typing. I’m comfortable with that. If, worse still, an email begins with just my name, or with no initial statement at all, I perceive it as aggressive and I have to struggle to resist that impression from that moment on. 

Academics are an argumentative bunch and quite often there are email ‘wars’, some of which are fine because they concern scientific or intellectual disagreements which are generally a good thing in a university. However, there is another kind of war that involves people challenging others (usually management) on quite a personal level. Invariably, these people feel the need to copy in the entire department in order to try to drum up support or, in their view, expose wrongdoing. Sometimes I agree with them, sometimes I don’t, but I always find these kinds of arguments massively anxiety-inducing and never join in. Accusatory discourse shatters the illusion of collegiate working that, however naively, I still like to believe in.

Another line in the document advised: “Be aware that body language and social signals are less easy to interpret via video.” I pointed out that body language and social signals are difficult to interpret at the best of times from an autistic point of view. My suggestion was that people should not even attempt to use body language during a video call, but rather should concentrate on what they are saying and try to avoid statements that are sarcastic, ironic, and so on. It’s possible that video communication could actually be better for many autistic people if that step is taken. Not all of us will feel the same, but I welcome not having to try to decipher endless social cues.

There was a whole section on “keeping in touch” which advised establishing regular “social breaks” in order to help people feel connected to colleagues and avoid social isolation. Now I have mixed feelings about this. On the one hand, I do think it is a good idea for people to stay in contact and sharing does combat isolation. But, and I pointed this out, one of the great benefits of online communication, from an autistic perspective, is the removal of the need to engage in endless “chat” with neurotypicals.

Finally, I attended an online meeting the other day in which the organiser had decided to use an “ice-breaker” exercise (always an odd phrase, that, but I know what they mean). We were asked to indicate (using a ‘pen’ on an online whiteboard) how we were feeling, on a chart which ranged between happy and desperate. This completely threw me, because my alexithymia means I never really know how I am feeling and it takes a great deal of effort to try and figure it out. There was no option on the chart for “I don’t know how I feel”, so the only solution I could come up with was to write that in the chat box. People responded nicely, but I was already far from comfortable with the situation, as they merrily put up coloured crosses to indicate their feelings, had a chat about them, and agreed that this was a great way to start a meeting. For me, the meeting was actually quite spoiled, because I spent the rest of it thinking about the exercise rather than concentrating on the business in hand. So the metaphorical ice expanded and hardened for me. And in any case, probably the straightforward answer to the question “how do you feel” is the one proposed to me by an autistic friend: “with my fingers”! 

There is a lot more that could be said about accessible home working. But I am very pleased that the university is taking this so seriously and involving autistic people directly in the formulation of advice and policy.