Proprioception, Autism and Me

What Is Proprioception?

Contrary to what we were taught as children, we don’t have five senses, we have eight! Alongside sight, hearing, smell, taste and touch, there are: the vestibular sense (balance); interoception (inner sensations); and proprioception, which relates to body position and movement in space. Proprioception is the quiet, constant sense that tells your brain where your body is and how it's moving. It's how you know your arms are raised even if your eyes are closed. It’s what lets you scratch your nose in the dark, or walk without looking down at every step. 

How It Affects Me

My proprioception is compromised in two respects. First, I have a balance disorder (Ménière’s), which affects the vestibular sense first and foremost, but is also closely connected to proprioception. Second, it is affected by my autism. It can be hard to disentangle these two (I have written elsewhere about the overlaps between autism and Ménière’s), but since I can date the onset of the balance disorder quite precisely (2007), I do have some memories of what I was like before that to go on.

When proprioception is unreliable, the world becomes harder to navigate. You might miss steps, misjudge where your hands are, or feel disconnected from your body entirely. Back in January 2024, for example, I fell and broke my elbow because I could not judge the edge of the kerb when walking in the dark. I was never any good at sports and prefer to work at a computer where I can be sure of my position. I always look down at the pavement when I walk. If I cannot see the corners in a room, then I start to lose a sense of where I am - I become a kind of amorphous blob, like one of the coloured shapes in a lava lamp.

Hyposensitive vs Hypersensitive Days

I experience a mix of what’s called proprioceptive hyposensitivity, when the signals from joints, muscles, and tendons are too faint or inconsistent, and proprioceptive hypersensitivity, when body feedback feels overwhelming. In the hyposensitive state, I write or type too hard with the pen or computer keyboard, sometimes stumble because I don’t get a clear signal from my feet (which feel removed from me most of the time) or I misjudge my strength when hugging or closing a door. In the hypersensitive state, I get a painful buzz in the skin from labels in clothing or even from having a haircut, and a frequent sensation of being too physically present in my body, if that makes sense.

 

What’s complicated is that these sensitivities aren’t consistent. On some days, I move through the world with reasonable grace. On others, I can barely judge the space I take up. A simple action such as reaching out to pick something up can feel like an exercise in guesswork and luck. I’ve had people assume I’m drunk when I’m simply trying to stay upright on uneven ground, especially during the height of Ménière’s. I can feel like I’m slightly delayed in space, as though my body and my awareness of my body are not quite in sync. Sometimes I don’t trust my limbs to stop when they should. Other times I feel I’m floating around myself, not fully anchored. My balance disorder adds another layer: the floor can feel like it’s shifting, and visual cues don’t always help.

This is a major part of why places like airports and supermarkets are such a nightmare. I can’t locate myself without seeing the corners and so all the other stimuli rapidly become overwhelming. I prefer small rooms with clear colour or texture distinctions between floor and walls. It’s a daily challenge and quite exhausting, because there’s a cognitive load that comes with having to constantly monitor your body’s position.

Living With the Sensory Tug-of-War

If proprioception is one of the body's internal GPS systems, then balance is its gyroscope. It relies on the vestibular system - structures in the inner ear that detect motion and orientation. When the vestibular system is faulty, the world can spin, sway, or lurch without warning. As my brain tries to piece together input from sight, touch, proprioception, and the vestibular system, it can struggle to make coherent sense of it all. The result is a sort of sensory tug-of-war. I might know I’m standing still, but feel as if I’m drifting away. Or I might feel a need to constantly adjust my stance, even when the surface is stable.

I’ve often said I don’t believe in reality, which has always been taken (by myself and others) as an amusing philosophical position. However, I now see it as literally true, and an expression of my proprioceptive issues. There are times when I feel strangely disembodied, like my “self” is hovering slightly outside my skin. This is not conducive to physical grounding. 

Grounding Strategies

I have adopted various strategies to compensate for all this. They are quite subtle but there nonetheless. For example, I love to wear a backpack that is full of gadgets and other bits and pieces. The weight and even pressure of it helps to position me in relation to the ground and the world around me. When I switch to a small, side-worn “man bag” I find that I lose the sense of location that the backpack gives me. The man bag, nice though it is, feels too feeble and lopsided to work. I also use quite a lot of well concealed stimming, pressing against objects, fiddling with things, holding onto rails, tapping lampposts as I walk past, letting my fingers run along fences, and so on. These all help to keep me grounded, to feel where I am.

Reflections

When I reflect on all this, I think I have underestimated the importance of proprioception in my life, something which Ménière’s has really helped to bring to the fore. Because of this awareness, I reckon I now have a deeper relationship with my body. It’s not a comfortable relationship, but it is honest. I have to pay attention to it and try to adapt to its needs. The consequences of resisting or ignoring this requirement can be catastrophic, so I do try, however inadequately. Some days, I feel like a patchwork of sensations and delays. Other days, I find a rhythm, a balance, a fleeting sense of presence. Those moments are small victories.

Interviews and Autism: some thoughts

During my academic career, I have chaired or sat on hundreds of interview panels. I went through the necessary HR training more than once and have read many guidance documents and briefing notes. Since being professionally identified (or “diagnosed”) as autistic in 2018, various issues that have always bothered me have come to the fore. I believe I have had some small impact on changing the interview process itself. However, and despite that, interviews remain a game designed by neurotypicals for neurotypicals. Given that they are a heightened and unnatural situation, those who understand how to role play and dissemble, how to engage in all those small social cues that provide mutual reassurance amongst groups of like-minded people, are the ones who normally succeed. The same would be true of an interview situation comprising mainly autistic people, but those are relatively rare. The structure and HR approach to interviews is most certainly designed by neurotypicals, although there have been attempts recently to be more inclusive. As always, those attempts are a bolt-on to standard practice: “if you are interviewing an autistic person then you should…”. It is often impossible to know that the person you are interviewing is autistic!

When I compare my experience as an interviewer with my experience as an interviewee, a marked difference emerges. I have had four major jobs in my career, and I have not been interviewed for any of them. In every single case, somebody has decided that I am the right person for that role and has invited me in. In other words, I have always been headhunted. I have only ever done two actual interviews. The first was for an academic lecturing post at a different university. The interview went as badly as might be expected, with all the usual autistic anxieties about the venue, the situation, and sensory issues, combining to lead me to overshare massively in answer to their first question. (I did meet the chair of the panel at a conference several years later and he was kind enough to express regret that they did not appoint me, which was very generous of him). 

The other interview was internal, when I was encouraged by the Vice-Chancellor to apply for a senior management position. The interview was conducted in a vast glass and metal building in central London by a slick team of HR consultants. I had no opportunity to familiarise myself with the building beforehand, no idea where I was going or who I was to meet, and no efforts were made to create a suitable sensory environment for me. My brain cannot be active if I am sensorially overwhelmed, as I was on this occasion. The interview was disastrous because they asked me what I thought of the Vice-Chancellor and I gave a full and honest reply which was pretty negative. Autistic people are always honest and direct in their answers to interview questions, regardless of the consequences for their own prospects. Looking back, though, I reckon I had a lucky escape!

Before becoming an academic at the age of 29, I survived in a haphazard way on a mixture of unemployment benefit (“the dole”, without which I would probably not be here today) and occasional casual work. I never held down casual work for long (it included things like collating traffic surveys, screwing the baseplates on mannequins, and working in a food warehouse) and I was never interviewed because I was placed in these positions by the dole office. Avoiding being interviewed was a key part of the reason for my lack of regular employment. I also did quite a lot of copying music parts for publishers and composers, something that again I could do without being interviewed and which I could do at home. At the time, I was unaware that it was the prospect of being interviewed that drove me away. Now, of course, I realise that that was a major reason, alongside the fear of having to mix with colleagues, working in unfamiliar environments, etc. 

Since my diagnosis in 2018, I have become much more aware of the issues facing autistic people who go for an interview. To give one example, I have repeatedly challenged HR (Human Resources) departmental advice to interviewers that they should assess a person’s body language and eye contact. This seems to be something all HR people are taught and fits with ridiculous clichés such as the idea that people are more honest if they look you in the eye. The whole idea of “body language” seems suspect to me. As far as I can tell, neurotypicals lie with their bodies all the time, and the notion that they share mutual understanding that way is just a comforting myth to make them feel reassured, a form of social bonding if you like. Needless to say, autistic people find all that utterly baffling and generally do not conform to normal expectations of how their bodies should behave.

Reinventing the interview process is a massive and probably unrealistic task. Organisations generally do not have sufficient time and resources to devote more to interviews. However, the downside is that many autistic people then either fail at interview or, more often, never get to the interview in the first place. There are numerous statistics around about the disproportionately low levels of employment in the autistic community. The National Autistic Society sets it at 30%.

What can be done? Ideally, I would like to do away with interviews altogether and replace them with a kind of probationary working model where people are given an opportunity to experience the real environment of the job for a week or two (during which time they would be paid, of course). One of the commonest mistakes autistic people make is to assume that they should try at all costs to get the job for which they are being interviewed. This is wrong because interviews should be a two-way process, in which both interviewers and interviewees figure out if this is the right ‘fit’ for them. Allowing a longer time to come to that judgment is the best solution, and would lead to far fewer bad appointments or, indeed, devastating rejections, being made.

Failing that, there are some practical steps that organisations can take to help autistic people who come for interviews. There are numerous good pieces of guidance online from, for example: the University of Bath, Autistica and the Buckland Review of Autism Employment. I’d distil these into the following key points:

1. Provide the candidate with videos of the interview venue in advance, or even a visit.
2. Give candidates the questions they will be asked in advance too.
3. Do not try to make candidates “think on their feet”. (That phrase is a typical example of metaphorical language to be avoided. Even as I write it, I become confused, even though I know exactly what it is trying to express). Even if the job involves having to respond quickly to situations, there is a great difference between doing so within a secure context and doing so in an interview.
4. Be sure to use clear language without metaphors and ambiguities. Speak literally.
5. Be very careful about the physical environment. Potential sensory issues include strong lights (strip lighting is the worst), unexpected sounds, strange smells, and so on. It is best to check with the candidate beforehand what bothers them. 
6. Avoid interruptions and stick closely to schedule. Include breaks if the process is long, and stick to them too.
7. Explain the process and make it clear that the interview is two-way.
8. Allow (even encourage) the candidate to stim during the interview. This has the advantage of being reassuring for them but also is an important signal that you understand their needs.
9. Provide a quiet room where candidates can decompress in private. Don’t make the candidates engage in social interaction with one another.
10. Be aware that autistic people may seek to comply with whatever it is you seem to be wanting.

For autistic candidates, the traditional interview process is often deeply flawed. The importance given to social cues and quick thinking under pressure works against autistic people. A more inclusive and effective approach would be to shift toward practical, real-world assessments that allow candidates to demonstrate their abilities in a supportive environment. To be realistic, though, the bets we can hope for is small but meaningful adjustments, such as: clearer communication, sensory accommodations, and a genuine commitment to neurodiversity. Where such changes happen, there are small victories which will eventually combine to change the culture as a whole. 

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.

Designing autistic spaces

One thing that my identification/diagnosis has revealed to me is my mostly unwitting role in designing autistic (or, more precisely, autism-friendly) spaces.

During my academic career, I have often been in the fortunate position of being asked to create spaces. On every occasion, I have been the Director of a Centre or an Institute, or the holder of a large capital grant that has given me the right to dictate how the space should be designed. To give some examples, I have built: two recording studios, a multidisciplinary research lab, a performing arts space, a usability lab, and an enormous institute full of digital technology and experimental equipment. Furthermore, I have frequently been asked to advise on the construction and design of spaces outside the university. Back in 2009, for example, I designed a digital gallery/workspace in a local arts centre, and I have recently been consulted on the design of a laboratory in a science park. 

Now, I should stress that I have no qualifications for building and designing spaces. However, I do have some quite strong opinions about how it should be done and since I was “in charge” in these situations, I took some key decisions. What I now realise is that every one of those decisions arose directly from my autism. Of course, I had no idea at the time what was going on!

In my life, I have always navigated the world by trying to find autism-friendly spaces. So, for example, on arriving in an airport, the first thing I would do is to seek out the multi-faith room. This is generally a quiet space with low-level lighting and low stimulus colours, often wood. It would have a transient population, so there was no real danger of unwanted social interaction (unlike churches, where there is always someone who wants to chat). As a child, at school, I created a “war gaming club”, which had only two members. The reason was that I could then take occupancy of a basement room that was otherwise unused. After a time, it became apparent to the other member that this was really about something other than “war gaming”, so he left. I had a silent room all to myself. There are many more such examples. 

When designing spaces in universities, or elsewhere, my main priority was to control the environment and especially the sound and lighting. All my spaces had the kind of sound-proofing that would be used in noisy industrial spaces. In other words, they were as close to silent as I could get, whether they were recording spaces or not. The colours would be simple - a white, or a pale blue - and uniform. This would extend to the ceiling and even the floor, but with differences in shade or texture making it clear where the boundaries were. This is important for me, because my proprioception requires location points to be able to function. Lighting would be LED and not fluorescent. As with many autistic people, I can see the flickering of fluorescent tubes and find it very disturbing. There would be no irregular patterns, no asymmetrical features, no irrelevant “features”. The spaces needed to be predictable and functionally elegant. They also had to be flexible and have technology built in, including silent air conditioning to remove any smells (again, my autism means that I have always found certain smells intolerable) and moderate the environment to a steady temperature. 

Now, when I look at the BBC’s Sensory Environment Checklist https://bbc.github.io/uxd-cognitive/ I see that these spaces of mine all conformed to those standards. I used them for my personal wellbeing, but what was interesting was how much neurotypical people also liked them. It is often that way: the environmental changes that suit autistic people also suit neurotypicals. Luke Beardon wrote: autism + environment = outcome. I now understand that I have somehow been aware of that formula all my life. 

Most recently, a local media/arts centre started talking to me about extending a space that I had designed back in 2009. This is a digital gallery. It is set off from the main area by a corridor, so many people do not go into it. I created a beautiful autism-friendly environment in complete contrast to the bright, buzzy café nearby. It has a floating floor, silent aircon, LED lights, and buff walls that can easily be repainted. Over the years it has hosted many superb exhibitions and installations and the directors of the centre obviously assumed that its purpose was solely digital art. Little did they, or I, realise that it is also a space for autistic people to retreat to when they arrive at the centre. Interestingly, they are now asking my advice once again about how to extend it. This time they are talking to me not because of my academic position or expertise in digital arts so much as my identity as an autistic man. I’ve been very frank with them about the purpose of the space, how it could attract a new autistic audience, what is required of the extension to make its dual purpose clear. We’ll see what actually emerges, but it is a sign of how far we have come that such things are now being openly discussed and in a most positive way.

Looking back on lockdown

Over a year of lockdown has passed, so I thought it would be interesting to reflect on my experiences from an autistic perspective. Needless to say, these are only my experiences. I do not speak for all autistic people, many of whom have had a very different time, as I well know.

There are many things I like about lockdown. It has made me realise just how challenging it has been to travel into work each day, for example. The sensory issues in commuting alone have drained me far more than I realise. I’ve got used now to ending the day with more spoons, which is a welcome relief. Some days I used to get home from work practically unable to speak or think, or I’d catch the wrong train and end up in Kettering, or some other disaster. Now I end the day tired but relaxed in a familiar environment, which is lovely.

This has meant that I can be somewhat more flexible about routines. Before lockdown, I would follow a very strict sequence of actions every morning in order to conserve spoons for when I arrived at work. So, the morning routine has included the same ordered sequence of washing and ablutions, dressing and eating, packing up my bag and leaving the house, every day for years. My main problem in lockdown has been that Frank Cooper’s Original marmalade, which I eat in Spring and Autumn (Fine Cut in Summer, and Vintage in Winter) seems to be completely unavailable. So I am eating Fine Cut out of season, which is a bit disturbing, but in the grand scheme of things not a major problem.

I generally find social interaction online preferable to face to face. It is entirely predictable and managed. There are no unstructured meetings or casual encounters. Whether it is a management meeting, a class, or just a “zoom coffee”, I know about it in advance. I enjoy that I don’t have to work at reading body language. Again, it has been lockdown that has made me realise how much effort that took every day. People often say that autistic people cannot read body language. I’m not sure that’s entirely true. I spend a large amount of time reading body language, because I understand that it is an important method of communication amongst neurotypicals. I’m not saying that I really understand it, but I am pretty good at spotting details and often notice things that others miss. It does require a lot of effort, though, so it is a great relief not to have to do it.

However, this absence introduces a new anxiety: have I now lost the skills to be able to decode body language and facial expressions? Those would take an enormous amount of work to rebuild. I have noticed that I am losing the ability to pretend not to be autistic. Now, many people will say that’s a good thing because masking is bad and we should be authentically ourselves. I would not disagree with that point of view, but the problem is that I then lose confidence in my ability to interact socially and start to become anxious about meeting people at all. Over the last few months I have started to get nervous before I meet someone. This is unusual for me and potentially a big problem in my line of work. 

There has been a major downside in interacting online with my students. They simply refuse to switch on their cameras, so I would not recognise any of them if I met them face to face. This is very strange. They know exactly what I look like, but to me they are just circles with initials inside. This creates quite a pressure on what will follow when we finally do meet. One other problem with online interaction is automated captions. Because of my hearing impairments, I do rely on these quite a lot. But the error rate is quite high and they can create as many barriers as they remove. An example of technology not being good enough for its intended purpose.

One benefit of all the extra energy I have saved up is that I have become much more active as an autistic advocate, both at work and in the world at large. Again, I think lockdown has contributed to that development. It has been easier to sign up for things, such as advising the NHS in Birmingham, or giving a presentation about my experiences to an EDI conference at Edinburgh University (both things in my calendar for this month) when I know that I don’t have to travel to a new place, meet people, etc.

My main anxiety at the moment is the end of lockdown. I really do not want it to end. I am not looking forward to going back onto campus with its chance encounters, random events and sensory challenges. My university’s campus is pretty typical. Every building is a mess of flickering fluorescent lights, asymmetrical patterning, haphazard “design”, high arousal colours, confusing signage, noisy spaces, drifting smells, bizarre heating, reflective surfaces, and so on and so on. On the plus side, my office is nice and quiet and hidden away, so I can be fairly surreptitious. If all the buildings were more autism-friendly it wouldn’t be so daunting, but I’m afraid they are pretty horrid. I’m trying to change that through my work on the disability action group, but it is not easy.

Overall, then, I find lockdown quite agreeable, and I am not aware of any negative impact on my mental health - quite the reverse, in fact. But I do have some anxieties and I am noticing some changes in myself. To what extent these will become a major problem remains to be seen. My survival bag, which would never leave my side before lockdown, has now been gathering dust in a corner for over a year. I am going to have to get it out soon and check that everything is fully charged up and up to date, from the noise-cancelling headphones to the personal air purifier, from the sunflower lanyard to the clip-on shades, and so many more bits and pieces that I use to make life tolerable. That will be a big moment!

Christmas!

I see that several weeks have passed since I last posted a blog entry. This was due to the pressures of the last few weeks of term. Delivering online tuition is great in many ways, but it is also a lot more work, especially in terms of preparation. Added to which, the covid restrictions have created a lot of logistical and administrative challenges which add to the burden. So, I was working extremely hard in the run-up to Christmas.

Ah, Christmas! A festival dedicated to sensory overload and unstructured social interactions. What’s to like? Well, in some ways I don't mind Christmas. I understand that it’s a time to draw closer to family and to shut out the darkness with some festivity and light. I also get that once upon a time it was a period of feasting in anticipation of lean cold months ahead. But since I am not a Christian, Christmas itself has little meaning for me. I prefer the winter solstice, which signals something meaningful: the days finally beginning to get longer again. So, secretly, I celebrate that instead.

From an autistic perspective, the Christmas period can be very challenging.The notion that suddenly the purpose of existence has changed from "doing things" to "joining in" is a source of anxiety. There are a host of unwritten rules that govern behaviour. There are so many sensory issues and so much disruption in the name of “celebration”. It is impossible to avoid Christmas without being “the grinch” (and nobody wants to be the grinch). It’s a social minefield, and the fear of getting things wrong is amplified at this time of year. 

Consequently, Christmas Eve at 1 a.m. found me unable to sleep and listening to the '1800 Seconds on Autism' podcast. I have followed this since the beginning and have found it consistently excellent. I must have been one of the first listeners to 'The unwritten rules of dinnertime', which was posted as Christmas Eve turned. There was so much relatable content in this episode! 

Christmas day itself is supposedly the big occasion, but it can quickly outstay its welcome. And once the day is over, that is not the end of Christmas! It takes weeks to get into Christmas Day and weeks to get out of it. A kind of stupor takes over, characterised by aimlessness. I have been pushing to get started on my new year diet. I do need to lose weight, but more important is to be able to take control of eating and drinking again, to impose structure on the day, to measure and catalogue my food intake.

The giving and receiving of presents is stressful and complicated. How to react in the right way? Also, making the value of the outgoing gift relate appropriately to the incoming one is apparently very important. But ‘value’ is measured on an undisclosed sliding scale of sentimentality, suitability and financial value. It’s the rock-paper-scissors of Christmas, except that working out which trumps which is more or less impossible. Thankfully, my wife handles most of the present giving, so I am very fortunate.

The sensory aspects of Christmas are similarly very difficult. We finally seem to have managed to eliminate tinsel and shiny dirt (aka ‘glitter’) which has made things easier this year. My problem was that they festooned the walls and decor, interrupting my lines of sight of the corners and angles of rooms, distorting my proprioception. We’ve reduced the lighting to just one tree and a window display for outside which is shut behind curtains. The tree has to be artificial. One year my wife insisted that we have a natural tree. Within 24 hours I could barely breathe and the tree had to be relegated to the garden.

The lack of structure of Christmas Day is bewildering. What time do you get up? Once the presents have been opened, it is socially unacceptable to go upstairs and work, so what happens now? How can I meet expectations when I don’t know what they are? My wife found me standing in the living room with my arms folded, paralysed by indecision. Fortunately, she had bought me a Sherlock Holmes Escape Room puzzle book - one of those non-linear, "solve this to advance to page n" challenges - as a present and then allowed me to immerse myself in that for several hours. It was my escape, both literally and metaphorically.

As Robyn Steward pointed out in the podcast, lunch at 4 pm is not lunch! As always, the meal itself was pretty disappointing after all that preparation. Turkey just is not a very exciting food, and the meal has a certain blandness. Added to which, we have crackers and hats. This year, I’m happy to report the crackers did not bang and contained gin, so they were a great improvement on previous years. 

I’ve been reminded of the time a couple of years ago when we visited family at Christmas. The grandson was naturally very excited and we had the whole lot: TV on, lights and smells everywhere, chit-chat all over the place, a strange bedroom, etc. After a couple of hours of this I became overwhelmed and had to retreat to the bedroom where I was able to watch episodes of Big Bang Theory undisturbed. I’ve said before that I understand the representational problems with BBT, but I still find stability in watching the same episodes over and over again. This Christmas, I’ve started watching it again on Netflix from the beginning.

I’ve also started up chess again, somewhat inspired by ‘The Queen’s Gambit’ (another case of a central character who was most likely autistic but this was never mentioned - rightly so, given the time at which it was set). Twenty years ago, I was a pretty good chess player, playing to a reasonably high level in the local club. I’ve decided to revive my rusty skills, starting from the ground up. It’s good to see how the chess world has evolved, with a strong presence on youtube and via lichess. Chess is a structured world in which one has control.

I am typing this on New Year's Day. Christmas was not so bad this year as previous years, thanks to the coronavirus restrictions. It is a shame that something that has caused such misery to so many people should be the thing that brings me relief, but there it is. Even so, it was impossible to avoid Christmas altogether. Now that the worst is over and there is a pleasing prospect of a return to some kind of structured existence, I will end the holiday period by completing a few projects: some scientific reviews, some composition, and reading some books, including those given me as Christmas presents. 

Happy New Year!

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.

Lockdown thoughts

After nearly three months of lockdown I thought it would be a good moment to reflect on the experience from my autistic viewpoint. As ever, I speak only for myself. Other autistic people, I know, have had very different experiences. But there may be some who can relate to what I am saying.

On the positive side, I have discovered how much I like working from home. In fact, it is a revelation just how much time in a typical non-lockdown day I have spent coping with environmental and social challenges. My biggest memory of the last meeting I had at the university is not what was said but rather the horrendous strip lighting, the asymmetry of panels on the walls, and my efforts to mask.

At home, I have almost complete control over my environment, a great routine and a set of rules to live by. I really like social distancing - in fact, I’ve been longing for it all my life - and I find online communication mostly fine, apart from some of the unexpected noises. The only problem, really, is that I don’t know when to stop working, which makes me more productive than ever, but perhaps not sufficiently work/life balanced.

But the message change from ‘stay home’ to ‘stay alert’ has lost me. I can follow the first, but the second is meaningless. And the constant lying and hypocrisy from our political leaders is really distressing. I can only deal with it by treating it all as nonsense.

Worse still, the recent ‘relaxation’ has created all sorts of uncertainty about social interaction. For example, keeping two metres distance is a clear rule, but how can I do that when there are so many more people about? What are the rules if someone is coming towards you in a narrow spot and showing no signs of wanting to move out of the way? I’m just staying at home as much as possible - it’s clearer and safer.

Shopping continues to create anxiety. Whereas before the difficulty was mainly sensory overload, now it’s more about social interaction. I had to leave the queue outside my local Tescos because people were getting cross with me about where I was standing. They actually shouted at me. I had no idea what I was doing wrong. I left before I shut down, but the result was that I did not go shopping that day.

My biggest anxiety is that the university will force me to return to campus. I can do my job perfectly well from home, including all the research AND the teaching. It requires some adjustments, of course, but I find these a creative challenge rather than a major problem. But universities are worried about their futures and are keen to see us back together on campus as soon as possible. If it gets to a situation where they require me to return before there is a vaccine, I don’t know what I’d do. Perhaps I’d resign. I try to reassure myself that  management has been very good at understanding my needs so far, but it still does worry me just the same. 

I like living in a locked-down way, free from many of the sensory/social challenges that I grapple with every day. I hope I don’t have to give up my job to preserve that.