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.

Fire drill

I thought it would be interesting to give an account of an incident that shows how autism can sometimes affect me in ways which are at best debilitating and at worst downright dangerous.

As part of my job, I sit on various scientific committees which review applications for research funding. These are usually rather sedate affairs, although pretty difficult work because there is always far less money available than demand. It is also very important, both for the new knowledge that will be uncovered and for people's careers. All us panellists take it incredibly seriously.

At one event last year, which was a week-long panel meeting, we were working on the seventh floor of a large office building. At the start of Day 1, the panel organisers advised us that, in the event of a fire drill, we should evacuate the building and meet at a nearby hotel. However, we were also told that in all the decades of such meetings there had never been a fire drill. I, of course, took that literally to mean that there would be no fire drill on this occasion either and put it out of my mind.

Three things I do not cope well with: sudden change; loud noises; unpredictable crowds. When the drill alarm went off on Day 3, all three violently intruded. The sudden change from academic discussion to emergency exit caused me immediately to start to shut down mentally. We then had to get into the stairwell with an extremely loud alarm and descend 14 flights. I scrambled into my bag to find my noise-cancelling headphones. They are the best (Bose Comfort) but even they could not block out the alarm. 

Had it not been for the crowd, forcing me down the stairwell, I would probably have ended up sitting in a room rocking back and forth and waiting for the alarm to stop. Obviously that would have been very dangerous. As it was, I was conveyed out onto the street by the flow of colleagues. I was incapable of rational thought and could not speak.

My group set off towards the hotel, so I walked that way too. But I had no idea why we were going there. I thought perhaps they fancied a walk in the sunshine. As my shutdown deepened, I resorted to one of the things that gives me a sense of normality and predictability: playing Pokémon Go. As I became lost in trying to collect Pokémon, I wandered off and was gone for maybe half an hour. I had no idea where I was and occasionally started crying. The game would bring me back to some kind of stable state, but I would keep sliding away again.

Eventually, some other members of the panel came and found me. I was horrified to learn that they had been anxiously looking for me. They escorted me to the hotel and it was only when we got there that I finally remembered the instruction on the first day. 

After some time, during which I just sat in a corner, the head organiser arrived. I tried to explain that I was autistic (something I had not disclosed before) but his initial reaction was disbelieving. I got the usual: "I know autistic people and you are not like them" response. Later, when we had corresponded a bit, I think he realised he made a mistake and was much more sympathetic, even asking for a report so that they could learn how to do things differently next time.

For me it was shocking, but not surprising, to realise how quickly I could change from taking decisions worth millions of pounds about scientific research to being unable to speak and only able to survive by playing Pokémon Go. All caused by sensory overload and a sudden change in environment and social interaction.

Early Childhood

One of the first things that the psychologists ask for when you request a diagnosis is an interview with your parents. In my case that was impossible. My father died in 1979. My mother died more recently, but was in no condition to give interviews. My brother and sister are both younger than me so did not know me during early childhood. 

I did manage to speak to some old friends of the family, who recounted various stories that I also remember. These became family favourites, endlessly repeated by my mother as she tried to give an account of how I turned out. As she kept saying: "you were eccentric from the moment you were born". I think I can now safely say that "eccentric" = "autistic". I wonder how many other "absent-minded Professors" fit that profile.

One of the earliest stories concerned this interaction with my paternal grandmother:

GRANDMA: Look! Look at all the lickle dickie-birdies on the lawn!

ME: Yes, Grandma. Three starlings, a blackbird and a robin. Erithacus rubecula. It’s a male or a female: young birds lack the red breast.

According to my mother, I was 3 years old when that happened. I'm a bit sceptical about that, but I was very young indeed. I had memorised the contents of the The Observer’s Book of British Birds. I used to read it over and over again, fascinated by the information it contained. To this day I can recall the layout of each of the pages, with their alternating black-and-white and colour photographs. Birds, and the natural world in general, became my special interest during early childhood.

From my point of view, this conversation was far from an example of eccentricity. I merely wanted to share what I knew. I don’t think I was showing off or being arrogant, and I certainly didn’t want to embarrass my grandmother. It was just that these facts were fascinating and I wanted to get them out of my head and into the world. Looking back, I now realise that of course that is exactly what I have been doing all my life: absorbing information and ideas, critically examining them and then enthusiastically communicating them to others. That is the essence of being a Professor, I suppose.

My ability to focus so intensely on things caused tensions, especially with my father. As I grew up, I found I had a 'photographic memory' (although this is a misleading term). I could read whole paragraphs or even pages at a single glance, a technique which I still use in my academic work. My father, by contrast, was proud of the fact that he had never read anything apart from the Bible. One day, when I was aged perhaps six or seven, he snatched a book out of my hand:

FATHER: You cannot be reading that properly! You are going too fast! 

(He read aloud half a sentence from a random page).

FATHER: What comes after that?

ME: It appears on page 23, which is a right-hand page, near the top. 

(After which I quoted the rest of the sentence exactly, and some of the following paragraph).

He never challenged me like that again.

My parents were Christians who believed in the old maxim “spare the rod, spoil the child”. My father, in particular, tried to drive out my unwanted behaviours with threats and punishments. While this was a common enough technique at the time, with me it went beyond what would be normal discipline for a child. My maternal grandparents even intervened at one point, alarmed by what they saw as excessively harsh treatment. My father gave them short-shrift and, if anything, stepped up his disciplinary regime.

Seen from my vantage point today, I guess this was an amateur form of aversion therapy. Behaviour my parents didn’t like was accompanied by an unpleasant stimulus. For example, my mother put a foul-tasting substance on my fingernails to stop my incessant nail-biting (it didn’t work - I just learned to like the taste anyway). My father’s methods were more violent, consisting of verbal and physical punishments that grew in number and intensity. It all seemed completely arbitrary to me. I can remember trying to work out why I was being punished. It seemed to happen on alternate nights, and I started to keep track of the patterns. I made diary entries about it. Thursdays were particularly bad days. I can remember sobbing uncontrollably into my pillow one day and resolving that I would never forgive my father for his unfair treatment of me. 

I was frequently told off for being “too clever by half”, being “selfish” and “trying to be different”. In one celebrated incident we, as a family, visited some church acquaintances who lived nearby. The wife of the house served “curry puffs” for tea. I expressed my disapproval with such precision and ferocity that I had to be whisked away. We rarely visited anyone after that, with the exception of a few relatives and family friends who were close enough not to be bothered by my “eccentricities”.

The problem was that I did not know I was different. Each day would begin with the overwhelming inward stream of information from my eyes, my ears, my nose, my mouth, my touch, that I still experience to this day. At the same time, I would launch myself into a futile effort to try to connect it all up and make sense of the world. I worked so hard to understand, but could not, with the result that I had a sense of failure every day. I assumed that everybody else was having the same struggles, but were more successful than I at dealing with them. It took many decades for me to realise that, in fact, they were not and I am different.

I always tried very hard to behave well. I was never violent and I didn’t have meltdowns. Instead, I internalised everything and would shut down, often unnoticed by others. Why did I do this, when I was being overwhelmed by such powerful feelings that I would lose contact with the world around me? Because I was working so hard to do the right thing, to get it right, to abide by the social rules as far as I understood them. I believed that my honesty would shield me from getting into trouble. I was ridiculously honest and would tell my mother not only the things I had done but also the things I was planning to do, for example:

ME: I’m going outside now, to play in the mud.

MOTHER: Don’t do that.

ME: Oh, alright.

But in the end, my honesty was no defence. I was usually wrong and I frequently got chastised. I can remember becoming desperately upset by the injustice of it all. 

This is difficult to write about, not so much because the memories are uncomfortable, but because I would not want anyone to get the idea that chastising autistic children leads to a successful adult. This lies behind Applied Behavioural Analysis and other controversial therapies. In fact, the only things my parents achieved by their strategies were to make me (and themselves) unhappy and to drive my autism underground. Take, for example, the business of eye contact. My father constantly told me to “look at me when I’m talking to you” and backed up the command with punishments. So I figured out how to fake eye contact, something which I still do. This has been a benefit in terms of functioning in non-autistic society, but it has come at a cost in terms of my mental health. He only succeeded in changing outward behaviours, but never got through to what was really going on. The depth of the reality of that is revealed in early photographs, which show me squinting, apparently frowning, while trying to look directly into the camera.

By way of comfort, I engaged in some of the “restricted, repetitive patterns of behavior, interests, or activities” which characterise autism. Some of these were interiorised and so undetectable by others. I would catalogue things endlessly (I still do this) and collect items such as toys, stamps, butterflies, apples, anything. The pleasure was not so much the collecting as the organising into elaborate systems, alphabetically, by colour, by type, etc. I would rearrange the items frequently, using the different systems. I would also repeat certain words and phrases over and over again, mostly either under my breath or in my head, but occasionally, when alone, out loud. And I would constantly try to align things, such as a mark on a window-pane with a tree outside, by closing one eye and shifting my head position. The more obviously physical “stimming” (self-stimulating) behaviours were suppressed by my parents. I can remember flapping my hands, from which I got pleasure, but this was frowned upon and prevented. I would also twirl my hair surreptitiously, something which continued until I was in my mid twenties. 

It’s hard to be even-handed about such memories, and a child’s perspective is not one that really carries much weight in later life. However, seen through the lens of an autism diagnosis, I can understand why my parents struggled so much. They must have been very frustrated and, frankly, exhausted by me. I never gave them a moment’s respite, because my brain was so active and constantly struggling with social and sensory challenges. It is perhaps not a surprise, therefore, that this phase of my life came to an end at age 7, when I was sent away to boarding school. The reason given for this move was that they had “had enough of me”, which I guess sums up the difficulty.

Airports...

I should say right at the outset that I like flying! Once I am in my seat, I know the rules and what to expect, so I can relax and enjoy the experience.

This is just as well, because flying has been quite a large part of my job over the past forty years or so, attending conferences, sitting on scientific committees, and even going on holidays (occasionally).

But whenever people say to me: "you can't be autistic, you're too high functioning", I reply: "you've never seen me going through an airport". After hundreds of trips through these uniquely hostile environments, I still haven't figured out a way to make it on my own without having a shut-down or a panic attack.

Since the diagnosis, I have now finally understood what has been going on. The last few times I have flown, I have made use of special assistance, which has been a great help. It has meant that I arrive at my destination fairly relaxed, rather than in a total mess. Some airports even provide videos of the process, which have been an enormous help in reducing anxiety. I actually watch these videos over and over again, even when I'm not flying.

I also wear the sunflower lanyard. This scheme, which also operates in some supermarkets now, is a godsend. When I am disorientated and lost and barely able to speak, as often happens, a member of staff will spot me and help. I can get confused by even the most apparently simple thing, so having this support on hand is fantastic.

So, what is it that presents such difficulties? There are so many things, it is hard to describe them all. Suffice to say, the combination of these is always overwhelming.

The building

I don't like spaces in which I can't see the walls. I lose my proprioception (which has been damaged by Ménière's too, but that's another story). I don't know where I am, which then quickly means I don't know who I am.

Every airport is made of shiny hard surfaces. There is noise everywhere and a wild array of signs that all seem important. And yet it is almost impossible to figure out where to go. I have often spent a long time standing forlornly in the entrance area, trying to work out which signs to follow, which route to take. I try to rationalise it into: you've got to get yourself into the system, then they can't lose you. But I frequently cannot figure out how to do that, then when I do something goes wrong (usually something to do with check-in).

Escalators everywhere, going somewhere/nowhere. And people...people knowing where they are going, striding purposefully, while I stand and watch. I can often travel up and down escalators several times before figuring out which one is right.

The people

People are stressed in airports. I have seen kindness, but I have also seen the reverse. But nothing can prepare you for the sheer chaos of all the people and the social pressure they emanate as you enter the system. It is completely overwhelming.

My stuff

The sheer terror of it. Passport, boarding pass, extra pass because the online check-in failed, hand luggage, checked-in luggage. Apart from having to remember all this and keep an eye on it, the real stress comes in security, of which more in a moment.

Sensory hell

Shiny surfaces. Shops and their smells. Noise everywhere: people, vehicles, planes, shops, machines, it's just deafening. Horrible lighting - everything is too bright. Asymmetrical patterns. Hand-dryers. Vehicles. Every single thing combines to leave me mentally shaken up.

Checking in

The fear of getting it wrong. I follow the rules as closely as I can, but I am always one step from total failure. The queues are not straight! And the encounter with officialdom is the first of a series of anxiety-inducing situations. That feeling of being sized up. The need to make eye contact. And then the incomprehensible instructions to go to a different gate when, as always seems to happen, the online check-in does not work properly and you have to get a printed ticket.

Security

And now the biggest torture of the them all! This is where I usually shut down. I have stood motionless, unable to speak, surrounded by angry and frustrated fellow-passengers, while I try to find the necessary presence of mind to move forwards. Having to remove metal objects. Following a set of rules that seems to change every time (e.g. shoes/not shoes). The opening of the bags and the arbitrary separation off into another part of the space to be interrogated. The feeling that even a small wrong look or remark can have you arrested as a terrorist. This compounds the inability to read facial expressions. The scan of the body. The violation of oneself. And the indignity of having to put everything back on while people's bags travel down the conveyor belt and shove you along. Disgruntled passengers wanting you to hurry. I'm beginning to panic just writing this! And it all takes place under horrendous lights in a massive noisy area full of machines and people in uniforms shouting incomprehensible instructions.

Since I have been getting special assistance, the sheer extent of my inability to go through Security has been brought home to me. At one point, my escort pointed to two yellow footprints painted on the floor. "Just stand there", he said. I spent ages trying to fit my size 11 shoes exactly into the size 7 footprints, which were arranged at an odd angle, while he stood bemusedly looking on and wondering what to do (I think). I'm a Professor! Yet I cannot understand even this simple instruction. And the worst of it is, I never learn. I make the same mistakes over and over again.

Duty-free

Having got through social hell, it's now time to experience more sensory hell. Why they put a massive perfume shop immediately after Security is anybody's guess, but there is no escape: you have to walk through it. The perfume is violent and sickening, sending my head into a spin. This is usually the last straw for me and I am now in a state of total shut-down, unable to communicate effectively. It can take me an hour or more to recover, which is why I always turn up for my flights about 3 hours early.

Boarding

The boarding gates are pretty stressful too, mainly because of the crowds and the strange ways we have to board the plane. Whether it's a bus and a walk across the tarmac or one of those corridors on wheels, it is always a pressured situation. Getting on to the plane and finding my seat is a relief.

Coping strategies

Before my diagnosis, I had a number of coping strategies. One was to locate the multi-faith prayer room. I'm not religious, but this is usually the only quiet space in the whole airport. I'm willing to pretend to pray just to escape the maelstrom. Another was to use technology to help. I have a personal air purifier which I wear around my neck. I find this helps both with repelling perfume and germs, and with calming me down. I have worn hearing aids for over a decade and I can set them to play tinnitus relief sounds such as white noise, which sometimes helps. And I would use headphones to blot out noise. Since the diagnosis, I have realised that noise-cancelling headphones are a necessity and these have really helped. I have also worn clip-on sunglasses. And I stim - I used to do this anyway, but now I am much more open about it - with a fidget toy or sometimes hand flapping/finger tapping. But the best thing has been the Special Assistance. Being escorted and told where to sit, where to go, etc. has been a massive relief. Also, they have taken me through a side door after Security in order to avoid Duty Free! That has been bliss. And on one occasion the person who was escorting me was autistic himself! So we had an interesting chat. I usually get on well with other autistic people (surprise, surprise).

But why?

On reading this, my wife said: but the real question is: why on earth have you done so much flying if you find airports so traumatic? It's true that I could have declined many of the conference invitations, scientific committee requests, etc. But I did not for two main reasons: first, they are an integral part of my job and important for keeping up to date with the latest research etc.; and second, I always enjoy what I find when I arrive at my destination. After a period of recuperation (usually about 18 hours) I can get out and about. Somehow I manage to forget about the trauma of the airport, until it's time to make the return journey.