Sunday 27 June 2021

Mind v. Body: Autism v. Ménière's

Back in 2009, I was diagnosed with Ménière’s Disease. I’d been experiencing the classic symptoms for a couple of years before that: powerful rotational vertigo; tinnitus; hearing loss; aural fullness. Ménière’s is notoriously difficult to diagnose accurately, but eventually it became clear that my symptoms were very typical and an expert ENT consultant was able to make the diagnosis and then prescribe treatments. I ended up having gentamicin injections, a kind of chemical labyrinthectomy, which were pretty effective at stopping the vertigo. My hearing loss is severe, and the tinnitus remains, and I still have balance problems. Needless to say, any Ménière’s patient also suffers from anxiety, usually brought on by the unpredictability of the condition.

The thing about Ménière’s is that it is a measurable set of physical symptoms. Standard audiometric tests can produce diagrammatic representations of the hearing loss. Balance tests and observations of nystagmus (rapid eye movements) can establish beyond doubt the presence of a vestibular disorder. Even tinnitus can be measured to some extent, based on clinical interviews. This is a set of symptoms that clearly exist in the body, originating in the inner ear but then with consequences for the whole vestibular and hearing system. 

However, many of the symptoms of Ménière’s, and indeed vestibular migraine, also overlap with autistic characteristics. Sensory issues, such as sensitivity to sound or bright lights or certain kinds of patterns, are typical of both. Anxiety is common in both. And a vertigo attack greatly resembles a meltdown/shutdown. The way of dealing with these is pretty much the same in both cases: leave the person alone in a low-stimulus environment with some pre-agreed objects and an opportunity to sleep it off. What happens afterwards is also similar: brain fog, shame or embarrassment, sometimes self-destructive thoughts.

It has been surprising to me how many autistic people I know also have a Ménière’s diagnosis. There are famous examples too, of whom Chris Packham is the most notable. I have found myself wondering a lot over the past couple of years to what extent these are connected. An ENT consultant I know speculates that migraineurs (people who have migraines) are an advanced form of human being whose extra sensitivities were a decisive advantage during the evolutionary phase of homo sapiens, but are now a disadvantage in the modern world. This sounds a lot like theories of autism as an advanced form of brain evolution. They may or may not be true, but the theoretical parallels are remarkable.

The question in my mind is: where is the boundary between my Ménière’s and my autism? This seems to be a body versus mind question, because Ménière’s is physical with consequences for the mind, whereas autism is neurological with consequences for the body. An autism diagnosis is easy to doubt, as we all know, because the symptomatic outcomes do not obviously point to an underlying physical reality (this is presumably what genetics research is trying to investigate). Yet it is quite clear to me that certain aspects of myself, especially those that have been in evidence since early childhood, cannot be explained by anything other than autism. But there is a grey area of overlap in which it is less clear what might be autism and what might be Ménière’s.

Let’s consider a concrete example. Several years ago, my wife and I went on holiday to the Arctic Circle, flying into Tromsø one dark, cold night to board a ship sailing down the Norwegian coast. This involved going through an airport, one of the most challenging environments for me as an autistic person. This was a few years before my autism diagnosis though. My wife supported me throughout, knowing the difficulties I usually have in airports.

While we were waiting at the boarding gate, I had an attack. I started sweating, the vertigo came on, and I staggered to the toilet expecting to vomit. Nothing happened though, and after a time my wife called me to say that the plane was leaving and we needed to decide whether to board it or not. I still felt terrible, but I decided to press on and staggered down the boarding channel to my seat, where I took out the sick bag and sat throughout the flight with my head in my hands. After an hour, though, I felt much better and we arrived in Tromsø just fine. I had some lingering brain fog but was otherwise able to function well enough.

Looking back on this incident (and I’ve had so many like that over the years) I question what was really going on? Perhaps my lunch had been too salty, but I doubt it. Was this in fact nothing to do with Ménière’s, but rather a shutdown or a panic attack brought on by my autistic response to the airport environment? That is certainly the way I would understand it now. The “vertigo” was qualitatively different to attacks I had had years before. The spinning was not so pronounced and was more a general sense of loss of proprioception. My hearing did not change either, which used to happen during a Ménière’s attack. No, this seems more like the kind of shutdown I used to experience long before the Ménière’s diagnosis. On this occasion, I could only understand it in terms of Ménière’s, but now I think that autism was probably a more likely cause.

Or was it, in fact, a combination of the two? Was autism creating the shutdown, but the body’s response was that of a migraineur or a Ménière’s sufferer? Or was it an overload of anxiety, coming from my response to the airport but connecting with autism somehow by building on anxieties around travel, change and the unknown? My wife was with me, which was great for my support, but I also felt responsible for her too. I wanted to make sure she was happy and having a good time. Perhaps the extra responsibility contributed to the psychological pressure?

So, how best to investigate whether there is any overlap between Ménière’s and autism? What is needed here is some transdisciplinary research. To achieve a more holistic understanding of the possible overlaps and relationships between these conditions requires researchers who are capable of overcoming disciplinary limits. I myself do not have the necessary expertise in either field, but I am sure there are people who could explore this further. The conclusion may be that there is no connection beyond symptomatic similarities. But even the process of investigation could have value in challenging the mind/body distinction that pervades medical and psychological research.

Wednesday 2 June 2021

Some thoughts following the Interdisciplinary Autism Research Festival (IARF2021)

A couple of weeks ago I spent the best part of three days attending the first Interdisciplinary Autism Research Festival. This was a wonderful event, during which I experienced the rare thrill of encountering an entire community of creative people and academics whose brains are wired the same way as mine. 

It would be both invidious and impossible to try to summarise or critique all the presentations. I managed to attend roughly half (there were two parallel tracks) and found myself impressed by the quality throughout. Every presentation had something special to offer and to single anyone out would give the false impression that there were “highlights”. So, I will restrict myself to describing some general thoughts that have arisen since the event. I needed a week or two to process everything in order to arrive at these comments. Even so, they are very much in formation still, and will doubtless evolve further over time. I just wanted to set them out now before the memories fade.

I should say at this point that I am not an autism researcher. My fields are music and computing (and ‘pataphysics, but that’s a whole other discussion). But I am experienced in interdisciplinary research, having directed a large research institute that sat at the intersection of technology, social science and the arts/humanities, and founded interdisciplinary subject areas, most recently Creative Computing. 

The IARF was inspired by the artistically-driven FlowUnlocked project and was part of the Wellcome Trust-funded project ‘Remembering what really matters’: Nature, Culture and Autism”. The disciplines represented in the festival included (in no particular order): autism research, psychology, cognitive neuroscience, education, health, disability studies, gender studies, philosophy, politics, linguistics, literature and creative arts (e.g. dance, music, visual arts, performance, animation, photography, graphic design, theatre). There was also a healthy sprinkling of activism, consultancy, community engagement and probably several other important areas that I have missed. Such a superfluity of perspectives provided a very healthy intellectual ecosystem for the kind of discoveries of connections and differences that are essential to the emergence of new, hybrid disciplines. The fact that so many of the participants were united by a shared neurotype meant that one could observe the rapid formation of such an interdiscipline in real time.

There are three main types of cross-disciplinary collaboration: multidisciplinary, in which teams of researchers from different disciplines assemble to address a common problem; transdisciplinary, in which researchers exist beyond, across and above all disciplines; and interdisciplinary, in which the methodologies of one discipline are used by another. The IARF fell largely into the last camp, with a great deal of methodological cross-fertilisation between mainly quantitative disciplines such as neuroscience and mainly qualitative ones, such as the creative arts. Indeed, one recurring fault-line for the whole festival was an autistic take on the ancient debate between positivism and phenomenology. As  usual in such discussions, the consensus was in favour of a mixed-methods approach. But what was unusual was the extent of the consequences for the individuals concerned of an inflexible insistence on one or the other. This was really a theme: the courage and determination of individual researchers and/or artists fighting for an autistic vision within an intolerant culture which insists on a methodological approach that constantly reinforces an outdated and harmful set of stereotypes.

The sense of assertiveness and fellow-feeling that this generated was accompanied by some classic signs of the emerging form of a new interdiscipline. A key area for discussion was jargon, which is always a major concern of communities of scholars as they try to establish boundaries for their field. In this case, participants were actively discouraged from using certain words which evoked rejected forms of research. Other terminologies were debated at length. 

So, this is an exciting time for the community of interdisciplinary autistic researchers. The new field is in formation in front of our eyes, and is ours to shape and develop as we see fit. It has great potential, and it is wonderful to see practice-based artistic research being included and treated as equivalent to more traditionally 'academic' disciplines. Bruce Tuckman’s classic model for group formation is “forming - storming - norming - performing’. So far, I have seen nothing but forming. Perhaps this will be one group that resists that rather neurotypical sequence by skipping past the “storming” and “norming” steps and heading straight from “forming” to “performing”. Certainly, the level of direct communication between participants would suggest that this is very possible.