Falling off

On 12 June this year (2024), I fell off my bicycle. This essay is about why I fell off and what I should have done to avoid long-term serious injury. Understanding those questions is going to require that we sift through rather a lot of my life on and off bicycles, the wisdom of a few other people, and a bit of interesting research. When we are done, I hope to have the materials for another module of the Autistic Cyclists MOOC.

When I was first learning to ride a bicycle, around the age of six, I fell off a lot, in interesting ways. I fell down holes, I fell off the jump ramps I built for myself, and sometimes I just fell over. I loved the feeling of cycling and the simplicity of the machine, though, and like other kids growing up in rural areas, my bicycle gave me huge freedom. When I was 10, I cycled miles from our ranch to visit my older brother at a fire station (and fell down on the way home). When I was fifteen, that summer I lived on my own in a trailer park on Douglas Island and cycled several miles down to Juneau for work in a restaurant every day. I saved up my money and bought my first real bicycle, a Peugeot PX10LE. It was a sprint bike, a better bicycle than I was a cyclist. When I got back to boarding school (the second one), my great friends Marsh, Jamie, and I used to ride all over the place. Best of all was when we got to the final year and were allowed out before classes—we would fly down the hill and glide a few miles through orange groves and sleepy Carpinteria to Tarpits beach and go bodysurfing before cranking our way back uphill, just in time for classes. That bicycle went where it was truly loved; I haven’t seen Marshall for many decades, but the bicycle went to him and so far as I know he rode it and won uphill sprints across California and Nevada, long after I became an emigré. I wound up with my first long-frame Raleigh touring bicycle, which suited me much better, and it went with me to university.

All that time, I remember watching other people do really interesting things with their bikes, like riding with no hands, or hopping their bicycle onto pavements. Some people could pull up to a junction and just balance there, wiggling a bit, until they cranked off again. I just fell off if I tried any of that, and I often fell off at stops anyway, because my feet just didn’t do the right thing or something. I remember riding a long day south past Half Moon Bay, coming to an intersection where a motorist gave me a baleful look, and just…falling off…for no reason at all. Somehow my balance went off and my feet didn’t come out of the clips and I went over onto the kerb. When I got home I had lots of interesting bruises. That sort of thing happened all the time. My first GP in the UK used to delight in the weird injuries I presented him with.

Rewind the story a bit, because I need to add another ingredient. At my first boarding school, the really violent one, there was a particular incident when I was 12 that had quite a long-term effect on my life. It was evening chapel, again. I disliked monotheism intensely, but cared too much about the principle of the thing to mock it and let it go, so the daily Christian rituals that were part of every boarding school were always miserable. On this particular evening, my gut hurt, but I was sitting in a pew towards the front and I was just too shy to want to do anything but get through the rituals. It did hurt though, as if I had cramps, but fortunately, it stopped quite suddenly and I was able to grin and look attentive for the remainder of the incessant hymns. Five weeks later I was admitted to intensive care, unable to eat or excrete and deathly ill, and when in desperation they cut me open they found a huge abscess from a burst appendix. That was what had hurt in the chapel that day. Months later the school arranged a phone call from some kids in my class to the hospital, who were rather disappointed that I had not, in fact, died. I am told that feeling your appendix burst is exquisitely painful, but for me it was not, even if it should have been.

To summarize from these anecdotes (and a litany of others): for as long as I can remember, I have loved the feeling and the mechanics of cycling, even though I have poor balance, fall off frequently, and tend not to notice if I have injured myself or am in pain. This is especially true under situations of social stress.

To those of you who are familiar with autism, this will be wholly unsurprising. When I sought my own diagnosis as an adult in their 50s, it was because I had an autistic child and the clinician who diagnosed them, hinted broadly to me that perhaps I shared that characteristic. For a lifelong researcher who has worked with difficult languages, computers, other cultures, and sacred ecologies—yet still finds social gatherings or the neoliberal university an unrelenting hell—an autism diagnosis explained a lot. It helped explain why I’ve always had a hard time socially but I never expected it to explain why my experience of my body was so different to that of most other people.

Using cycling as a lens onto my experience allows me to integrate the social, environmental, intellectual, bodily, and sensory aspects of autism. We autistic folk have weird sensory systems. Many researchers now think that the key to autism lies in our early neurodevelopment, and in particular, that our sensory network and cortices develop differently to that of allistic people. Across the eight domains of sense—add proprioception (knowing where your body is), enteroception (being aware of your internal states, like pain or hunger), and balance to the usual five—we autistic folk will have heightened or dampened sensory capacities. When an autistic friend says ‘I can hear that, it’s really loud’, they are speaking the truth; when an autistic friend says that a particular flannel is unbearably rough, they are telling it like it is; and when they forget to eat for a day, well, they genuinely didn’t notice the hunger. (They will, however, be genuinely hangry, so be kind to them.)

This is only the beginning, though. We also know that autistic people suffer stress across sensory domains, and when that stress becomes too much, it leads to catastrophic events. An autistic student stuck in a classroom with a flickering, buzzing tube light (and oh, yes, trust me we notice every single one) is being pushing and stressed, such that a gentle touch (let alone a poorly-timed poke or prod) can cause them to collapse. In autistic-led support work, we classify the collapse as taking one of three forms: shutdown, meltdown, or elopement. Our long-suffering student might freeze, unable to speak or respond, completely pulled inside themselves for hours (shutdown). They might lash out, screaming and moving suddenly and violently (meltdown). Or they might simply bolt from the room, moving fast in whatever way gets them as far away as possible, even running across roads or into traffic (elopement). Autistic folks’ own internal experience of these collapse states look very different to what people around them might see. In shutdown states, for example, an autistic person can seem quite calm, if unresponsive; but internally, we can be overwhelmed by a sort of meltdown-turned-inwards. The sense of time can be distorted, such that it might feel like a few minutes of powerful sensations, a kind of internal storm, but viewed from the outside we are curled up tightly for an hour.

Another feature of these sensory stressors is that sensory stressors in one domain can cause a change or collapse of function in another domain. Practically, this means that an autistic cyclist will have a harder time keeping their balance in a noisy, flashing, or strong-smelling environment, or even simply that they will find cycling harder if they are wearing clothing that feels unpleasant.

We also know—and classroom teachers trained in autism skills are very aware of this—that social stress can aggravate or exacerbate stress caused by sensory stimuli, and thus hasten the onset of a catastrophic response. Autistic folk in structured social settings, such as classrooms or workplace offices, are acutely aware that there are social rules, and struggle to decipher them or perform them successfully. (Those same performances are effortless and indeed unconscious for allistic people.) To be in a social context, especially one where autistic peoples’ needs do not determine the social rules, is constant ongoing and exhausting work for an autistic person. Hence, for our hypothetical student above, if the teacher singles them out and asks them why they are tapping out a rhythm or not meeting the teachers’ gaze, that question itself can be the sensory event that provokes a catastrophic response.

In conversations with my colleague David Simmons at Glasgow University, it became clear that he was convinced that we can actually make stronger claims about the interaction between social stressors and the senses. David argued, on the basis of his research, that social stressors could interact with the senses in autistic folk, and in particular, that social stress could affect balance in autistic cyclists. We hope to investigate this in future research, but from my work with autistic cyclists this seems almost commonsensical—and it’s the key to this essay.

Which brings me back to the 12th of June 2024. I’m an older cyclist now, on my third career: computing first, then academia, now policy and government. I don’t cycle as much as I wish I could, and I was put onto heart medication, including anticoagulants, years ago. On Wednesdays, for the past two years, I have commuted to Glasgow as part of my work. It’s a long commute; the rail journey from Aberdeen to Glasgow is almost three hours, though it’s a spacious and comfortable train with great views. I usually mask up for the more crowded bit of the journey near Glasgow. That particular Wednesday, I had caught an unusual train back from Glasgow to Aberdeen. It was a much smaller kind of train (a Class 158 as opposed to an Class 43, for the train geeks), and it was really crowded. Rather than having a table to myself as the train emptied out, I was squeezed in with a full table of humans wearing loads of scent and talking snarkily about other humans. The train kept accumulating more people as it went along.

By the time I got to Aberdeen I was on the edge of screaming and could feel my vision flickering with brightness. I had to get away from the train as fast as I could, and I was so very glad to see my trusty bicycle waiting for me in the rack. I just wanted to get home, away from people, away from the smells and the opinions and the enclosing blobness of it all. I managed to fetch the cycle down, unlock it, fit one bag onto the rack, get my helmet and pack on, and wobble across the car park towards the exit tunnel. I noticed that something wasn’t quite right with the alignment of the front lamp, and then I was down, hard, landing on my arm and knee in the rough pavement in the tunnel. I knew a taxi could follow me out of the tunnel at any moment, so I picked myself up, noted that my leg was bleeding and the trousers torn, observed that my sleeve was not torn and everything that should bear weight could, and then much, much more stressed I took off for home. To my credit I did not jump any lights, or at least I don’t think I did. All the way home I had tunnel vision and repeated ‘I will get home, I will get home’ to myself: I had to get home to my family and look after them. I wonder if there were a few strange looks on the way—I must have looked a bit desperate. (At this point you should be looking back up the essay and thinking, ah, right, “social stressors affecting senses” and “elopement”.)

Six days later I presented myself at the Accident and Emergency fracture clinic. By the time I did go it was a vast aubergine of an arm, and many weeks later I still have a swollen, blackened haematoma just below my elbow. It did hurt, but I was more worried about the fact that it didn’t move much and I could tell the nerves were being pinched. If I had reported there the day after the accident, I was told it was likely they would have stopped my anticoagulant medicines temporarily and possibly drained the arm; there was a lot of internal bleeding. Honestly, after that Wednesday evening, I don’t know how I could have faced a clinic the next day: I just wanted to hide.

So what can we learn from this? For starters, it’s a rather brutal example of social stressors affecting the senses necessary to cycle safely. Both my sight and my sense of balance were affected.

Second, there are lessons on how to handle accidents. In the Autistic Cyclists’ MOOC, there is a section on what to do when things go wrong. We cover the possibility that social stress might make cycling difficult or impossible, and in fact we cite the example of a young autistic cyclist who shut down when a coach driver sounded their horn at a traffic light. That cyclist had to be helped off the road to a safe space and recover at their own speed. But the course was designed for groups of cyclists supporting each other, whether that is one autistic person with a carer, or a group of autistic people cycling together.

But self-care as an autistic cyclist is altogether different, and this gives us our third point. One might argue, from this example, that autistic cyclists on their own are vulnerable—which is of course true—but that does not mean we should not cycle. Rather, it means being more aware of stressors and the intensity of stress, and taking appropriate measures before the situation becomes unmanageable. A solo autistic cyclist has to avoid the conditions that might lead to accidents, and that means being self-aware.

A rule we propose in the Autistic Cyclists’ MOOC is to take as much time as is needed, to stop frequently for water or scratching itches or whatever, rather than pressuring the group to keep moving. That’s a really good rule, but harder to apply to oneself. In this case, perhaps the simplest intervention would have been to not take the small and crowded train, but to wait; and once on, to get off and wait for another train, or even just not travel at all. I’ve certainly become far more cautious about timetable changes! The next possible intervention requires recognising that the point in the journey between train travel and cycling is also a checkpoint. Stop, reflect: are you in any shape to cycle? Should you find someplace quiet to drink a bit of water and wait? Should you just take a bus home?

However, when one is already stressed to the breaking point and the instinct to shutdown or bolt is kicking in, it is very hard to make good decisions. By the time I got to Aberdeen station that day, I could only see one predictable, reliable sequence of actions that would get me safely away. As much as I would like to claim that I have extraordinary reflective capacity honed by years of meditation, I am also autistic and it is, in exactly these circumstances, a genuine disability. Hence, the right move here is to make the decision to take a break well before one’s capacity to make good decisions is impaired. “This is an awful train journey. I will need to pause for a while and recover when I get there. I will send a message to my family saying that I will need extra time for a breather before I hop on the bicycle.” Sending the message locks in the decision and it alerts your support people that you are under unusual stress: good move.

Finally, I really should have taken myself off to Accident and Emergency the next day. Even if it didn’t seem to hurt, even if I really didn’t feel like it, I should have gone. And that means training my family to send me there, because they will be able to recognise a serious injury even if I don’t feel it as such. The Scottish NHS is actually so good that I did get very good care, in the event, and I will come out of this with an arm that hurts in a couple of places for a long time, but no real loss of function. That means it’s just like diverse other bits of me that remember various wonderful adventures on the way to being this old. No regrets, but perhaps learning a little prudence and mutual support isn’t such a bad thing.