Friday, 12 February 2021

Why I don't drive

 

Autistic people can be perfectly good drivers. Some recent research shows that they are, if anything, safer than non-autistic drivers (with thanks to @AnnMemmott). But I am one of those autistic people who chooses not to drive. The world is a better and safer place without me driving in it!


I was 26 years of age when it occurred to me that I should learn to drive. I had resisted it at a younger age, explaining away my objection as a deep dislike of cars. In fact, I had a problem with the whole idea of bodies in motion and not knowing exactly where the edges of things are.


By the time I reached my mid-20s, this became too hard a position to maintain, both to myself and others. I felt that everybody else was driving so I really should learn to do it too. This was a mistake.


I passed my test first-time without a problem. I am extremely good at following rules and giving the appearance of being in control of the situation. Driving seemed to be all about that. I learned the highway code, found out what was expected of me, and performed very well during the test. No problem, right? Wrong!


First there were the intrusive thoughts. Noticing details all the time. For example, as a passenger I had this habit of memorising number plates. Now as a driver, I was taking my eyes off the road to read the plates. The same went for the patina of paint on road surfaces, the alignment of painted lines, any text on any vehicle (hyperlexia), and a hundred and one other distractions. 


Then there was the perturbation created by rule-breaking. Any driver knows that you have to bend rules sometimes for safety’s sake. Some, even most, break rules just because they feel like it! I would notice every infringement but worse I was incapable of breaking rules myself. This was highly dangerous in some situations.


Next was getting overwhelmed at junctions. As I approached the junction, I would start to anticipate it by imagining the various other roads that intersect that junction. I would then imagine the roads connected to those roads and their junctions. And so on and so on until my brain was occupied by an entire map of the local road network. Meanwhile, I was not paying any attention to the vehicles around me.


Another problem was literal interpretations. For example, there used to be a sign at yellow-hatched crossroads that said “enter only when box is clear”. Now I know that that referred to the entire hatched area, but my mind would not get past the idea that each small parallelogram was a tiny box and I should enter each one separately. To overrule this idea was exhausting. I had to try to drive smoothly when my instinct was to stop and start at every box.


Navigation was also always a major problem. I would memorise the route map before setting out (even on very small journeys) but would be unable to cope if the route was changed for some reason. I can remember shutting down on a major road, for example and even deliberately driving the wrong way up a one-way street when I thought that it would get me back onto my envisaged route. Big conflict with rule-breaking there.


Finally, I should mention the overwhelming sensory aspects, with lights, noise, colours, and objects in motion. The combination of these frequently became too much when overlaid on the sense of responsibility for others. This combined with my dislike of unclear borders to complete what was a highly over-stimulating environment. 


To anybody else, it looked as though I was driving just fine, but the truth of the danger of all this was brought home to me when I had a minor accident at a junction. There were suddenly no road markings (I think they were resurfacing) and I found myself completely without rules to follow, at which point the habitual confusion I experienced at any junction took over completely leading to bad decision-making that ignored the physical realities all around me. I’m just glad nobody was hurt.


I gave up driving six months after I started. Several years later, I remarked to my mother that I thought I might take it up again. She shuddered and said “it’s probably best if you don’t do that”. The world is a safer place for that advice!


Monday, 1 February 2021

The 'Neurotribes' conference, Sound Festival Scotland.


Yesterday I attended the 'Neurotribes' conference that was part of the Sound Festival in Scotland. It was really great to see an event like this and it was a pretty interesting and eventful day. Full credit to Ben Lunn, Drake Music Scotland and the Sound Festival for staging such an inclusive conference (complete with BSL and live captions). Great efforts were made to enable people to take part and to consider every viewpoint. The day included a concert of music by the neurodivergent composers Joe Stollery, Ben Teague, Rylan Gleave, Ben Lunn, Siobhan Dyson and Jason Hodgson, as well as spoken presentations by each of them. There was a special tribute to the late Lucy Hale in the form of a performance of her piece ‘Snap and Sustain’.


It struck me that this was the first time since my diagnosis three years ago that I have identified as autistic in such a public setting. Consequently, once I started to speak in the final discussion I became surprisingly nervous. There was that familiar “imposter syndrome” feeling that most late-diagnosed autistic people know. Also, I had some things to say that were rooted in personal experience, which always makes me nervous. I’m more used to speaking in academic conferences where nobody is much interested in personal statements.


The day began with a performance, or more accurately a screening, of Siobhan Dyson’s audiovisual piece ‘Listen Carefully’. The great value of this work was its instructive effects for non-autistic, or neurotypical, people. It emerged in the discussion afterwards that they had been strongly affected by this powerful depiction of the way the world is experienced by autistic people. The National Autistic Society and others have tried over the years to convey this in short films or animations, but apparently not with the same force that was achieved by Siobhan Dyson.


It also emerged that several of the autistic people had found the piece overwhelming, as indeed did I. Trigger warnings had been issued, but I foolishly ignored them and tuned in, thinking: it can’t be all that bad. It turned out that such strong depictions of my lived experience are intolerable for me! I lasted under a minute before I was obliged to bail out, on the edge of a shutdown and with my hearing disturbed in the kind of way that normally only happens when I visit the audiologist. I played chess for a while to restore my equilibrium, but the effects lasted all day to some extent. Some friends were concerned about me, which was very considerate of them, and Siobhan herself was clearly very worried that she had upset other autistic people. However, I would argue that it was much more important that the piece was heard by those who needed to hear it. My takeaway lesson is: heed trigger warnings!


The concert contained some very enjoyable and well written music. Because of my hearing, I cannot listen to music for very long, so I recorded the whole thing and listened to it in batches afterwards. One comment I would make to the organisers: it might have been a good idea to adapt to the online medium a bit more and edit each piece separately to make it available online for asynchronous listening. The format of a ‘concert’ didn’t work so well over the web. But the performances were clearly excellent.


The stated objective of the conference was to “bring together promoters, ensembles and composers on the autism spectrum” in order to “discuss the challenges facing composers on the spectrum and explore how to enable greater inclusion and facilitate effective and supportive working relationships”. This really came to the fore during the final discussion, when representatives from several music organisations, performance groups and publishers met with the autistic participants. 


My (quite challenging) contribution was to ask why it is that such organisations always seem to position themselves as the arbiters of what is worthy by having a competitive selection process judged by a panel whenever they call for new works? Could there not be a randomised selection process rather than this constant 'panning for gold' (as my friend Ashok Mistry calls it)? Can we not trust audiences and participants to judge what is good or valuable?


This caused a lot of discussion. If I understood the comments correctly, the neurodivergent people mostly agreed with what I said and felt it resonated strongly. The representatives of the organisations, possibly feeling attacked (which was not my intention) kicked back somewhat, explaining that they are always trying to be inclusive, but that they feel they must support certain individuals or groups, because they have a duty to the artists and have to meet certain requirements. But they also admitted the discussion made them feel uncomfortable. As someone remarked: “unsuccessful applicants may wonder what they have done wrong”. 


Speaking from personal experience: that is exactly the problem. I recently wrote a blog post about “getting it wrong” which argued that we often judge ourselves by neurotypical criteria, leading to a diminished sense of self-worth. For an autistic person, who has spent a lifetime trying to understand unwritten rules in an effort to fit into a society which makes no sense, it can be devastating, even traumatising, to be rejected in a way that seems to involve a set of unwritten rules. 


Of course, neurotypical people also feel fear of failure, despondency at rejection, and so on. But this commonality should not lead to the classic “we are all a little bit autistic” argument. The autistic experience is completely different and may range from a hyposensitivity in which a rejection is greeted with complete indifference, to hypersensitivity in which it is traumatising. Either way, it chimes with a lifetime of trying to fit into a world which is incomprehensible. 


Sometimes, success can be worse than failure, because it is achieved at the expense of others. Autistic people, contrary to received wisdom, are often hyper-empathetic. We think (care) more about the people who were not selected than about our own success. When you get a commission, everybody starts telling you you are marvellous, but all you can think is: why? And once the project is over, everybody stops telling you that, and your response is also: why? In other words, the selection process operates in exactly the same way as day-to-day society. Autistics are constantly trying to operate in a world which is apparently configured to make us fail, and in which any success arises from arbitrary social conventions. Music commissioning mimics that system with its Darwinian selection processes. 


If a random selection process would be too radical, then perhaps a process which is not based on perceived quality, but rather on some kind of clear mechanism, might work. Good and transparent feedback is essential, but is so often lacking. I take the optimistic view that all composers create work that has something good and interesting about it. But, we wouldn’t know that unless we get to hear it! If we assume that there is always insufficient time and resources to hear everything, then some kind of equitable system is the most desirable compromise.


So, all in all, this was a successful, stimulating, and sometimes challenging conference which left me with plenty to think about. Despite my nerves and the occasional difficult moments, I’m glad I went and it was very nice to feel that I am still part of the contemporary music scene to some extent. It would be good to see similar events organised elsewhere. There is a lot of interest in engaging with neurodivergent people at the moment, which is terrific, but the process is in its infancy and there is much more to learn about how this might best be done.


Friday, 1 January 2021

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!


Sunday, 18 October 2020

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.




Sunday, 11 October 2020

Accessible Home Working

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

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

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

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

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

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

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

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

Sunday, 20 September 2020

My autistic career

How did I get where I am today? (a look back at my career history in the light of my autism identification in 2018).

In many ways I’ve had a successful career. I became a Professor in 1997 at the age of 40. I have directed research institutes, served on scientific committees, won awards for teaching, founded new programmes, and published a respectable array of books, articles, and other outputs. My musical compositions have been performed around the world and I’ve had commissions from leading orchestras and ensembles as well as the BBC. 

But it has not been a straightforward journey at all. My autism has been fundamental to my success, but also an obstacle at times. Because I was unaware that I am autistic, this has caused a lot of confusion and difficulty which I am only now coming to put into perspective.


Several years ago, my university HR department sent me a request to give an account of how to become a professor. Their idea was to offer advice on career progression to junior academics. I realised that this was an impossible task. How could I explain that I had followed no obvious career path, and that more or less everything that has happened to me has been a matter of chance? 


I have only ever applied for one job in my life, and that application failed at the interview stage. Everything else has come about because somebody somewhere spotted something about me that they saw as valuable. Needless to say, I am very grateful to those people. If I’d known at the time that I was autistic, I might have had a better grasp on what was happening. As it was, I had no idea what was going on. I have steered a nomadic course, driven by interests that I have over-thought for a living.


It would be tempting to see my success as the product of privilege. As a white male who was sent to private school, you might assume that the path would be smoothed out for me. I wouldn’t want to deny my privilege, but even so this was not really the case. I left school  traumatised, unqualified to enter university, without any financial support, and the fabled ‘old-boy network’ was nowhere to be seen. Life has been a real struggle at times, and my relatively recent success has been the result of sheer determination. This is purely down to my autism. Every day of my life I have had to overcome sensory and environmental challenges. This is the way I have lived as an autistic man, and it tended to produce a persistent mindset. I use routines and structure to drive me forwards and I learn to survive in a neurotypical world by ‘masking’. 


My first encounter with the world of work came after a period of pennilessness and trying to survive in London. I had signed on to the dole on leaving school and the unemployment office eventually found me a temporary job. This involved transferring a massive pile of paper traffic surveys into a data format that could be processed. I worked with another young man in an office just off Oxford St. Every day, I would transcribe data. Each lunchtime I would eat the same meal - a mini pork pie and a pint of milk - in the café at Selfridges, where I always managed to get the same seat. I took the same route to work each day and did the same things in the evenings. The tube was a synaesthetic dream*, as I tasted or smelled the colours of the London underground map. It was really autistic heaven and I would still be doing it today were it not for the fact that it was only ever temporary. The only downside was that my co-worker wanted to chat constantly and insisted on playing his radio. I found that talking about my interests soon discouraged him though. So we worked together side-by-side, but were agreeably quiet most of the time.


When that job ended, I tried screwing glass base-plates onto mannequins, but could only survive for a week because of the hellish environment (noise, fluorescent lighting, social interactions). After I left, everything really fell apart. I had almost no money and ultimately nowhere to live. I was forced to go back to my parents’ house, which was quite a challenging environment too, but at least I had a room. There I was able to re-sit my A-levels. This time I managed to get good enough grades to get a university place. Out of the school situation, I could control my environment better so there were fewer social and sensory issues. I finally figured out that what was required in exams was not direct answers to the questions with original thoughts, but rather the regurgitation of a set of memorised ‘facts’. This I could do, although it bored me to do so.


So, I did much better and was awarded a place at a university. By this time, I had convinced myself that I was really not very good academically, so it was a surprise to find that I came top of my first year group in the examinations, with an overall grade of 88%. Suddenly, I had a glimpse of what was possible. Luke Beardon has stated that autistic people are better suited to PhD level work than to school work, and this was really true for me. The deeper I was able to go into a subject, the more I flourished. I found that I knew far more already than most of my fellow students and, apparently, my tutors recognised the fact. I was positively encouraged in my interests, which drove me into some very obscure but highly rewarding areas of music and literature.


While I enjoyed specialising, I also began to realise that academic disciplines were far too constraining. At school I had been made to choose between “science” and “arts” subjects. I generally chose the arts side, but it really was upsetting to have to give up subjects like chemistry. I couldn’t see the difference between empirical research founded on objective observation and subjective representation based on lived experience. The two were simply different sides of the same thing, it seemed (and still seems) to me. The path I pursued as an undergraduate and subsequently was all about work that straddled these two areas.


The conventional view of autism is that “special interests” are narrow and highly focused. Reading the literature, I often see that music and computing, which are my two biggest special interests, are common amongst autistic people. Becoming a professor is usually the result of ever-increasing specialism within a narrow field of enquiry. What distinguishes one professor from another is often quite a small difference between their fields of expertise. In my case, my specialism has been a kind of interdisciplinarity - being able to make connections across disciplines which others fail to spot. I would go further and say that the structure of the modern university is an articulation of neurotypical thinking. Autistic people can certainly flourish within this structure when their interests happen to coincide with the disciplinary focus, but they can also flounder badly when the structure runs against them. I’ve had both experiences in my time as the university has changed around me.


So, I completed my undergraduate degree very successfully and then took a Masters, but after that found myself once again living in London with no obvious source of income. Once again, the social and sensory issues that had challenged me before reasserted themselves. I did not realise what was happening though. If I had had the autism diagnosis then, I would have been so much more able to cope. As it was, I lived a pretty hermetic existence and rarely went out. I tried to earn a living as an independent artist, but that was hopeless. I formed a music ensemble which was quite successful, but it lost loads of money and was unsustainable. I did some occasional work copying music parts, which just about covered the rent, but for quite a few years I was living pretty much hand to mouth on the dole once again.


I read voraciously, though, and consumed as much new music as I could find. Essentially I continued the work I’d done on the degrees, following my nose and researching things that interested me. I’d spend a lot of time in the Reading Room at the British Library as my investigations became ever more obscure. I wrote and published articles about my research. I even appeared on the radio and TV quite a few times. 


The advantage of this way of living was that I was able to control my environment a great deal, had very little social life, and followed my interests. At the time, I thought I was failing, but now I can see that I was living the way an autistic person would want to live. My sense of failure was the result of trying to do what the neurotypicals were doing. I was judging myself by their standards and constantly finding myself wanting. I’ve discussed this in a previous post titled “getting it wrong”.


My academic career, meanwhile, took another wrong turn. I enrolled as an MPhil student, but found myself unable to abide by the conventions required by that kind of degree. So I did some amazing research (all of which was subsequently published to considerable interest) but I presented it in such a way that it could not be accepted by the university. Years later, when I did my PhD, I finally figured out how this kind of work should be done properly, and succeeded with no problem. It takes me a long time to process conventional imperatives like this. Much of my anxiety comes from that sense of being constantly on the brink of total failure. I think this is another autistic trait: an ability to hyperfocus on the local without being able to view the global. That’s something that would need to be tested more scientifically, but it is my conjecture and there is lots of psychological research that supports the idea.


This period of my life was brought to an end by an invitation from a well-known composer to work in France on a big operatic project. So, I had gainful employment in rather grand surroundings and ended up living in Paris, which I did enjoy. Even there, the pattern of life was not dissimilar to the way I had lived in London, but I did have a regular job to go to. About a year after that ended, the same composer invited me to give some part time lectures at a polytechnic.


My initial encounters with lecturing were pretty disastrous. First, I massively over-prepared everything, so the poor students were inundated with far too much detail. Second, I was plunged into a world that relied completely on social interaction, which was not my strongest point. Third, it rapidly became apparent that the students did not like me at all. I remember being given a set of “reflective journals” written by students during a project that I co-supervised. Every one of them was full of negative accounts of me, my personality, my teaching style, even my dress sense. I very nearly quit at that stage.


I also ran into trouble with authority. There were many incidents, but two will suffice to illustrate the point. My office was a horrible colour, made worse by fluorescent lighting. So one weekend I went in and repainted the walls in a low stimulus colour and installed a standard lamp. The following week, I was hauled in and disciplined for “vandalism”. Apparently I was not allowed to customise my working environment. They sent some people to restore it to the original colours and they removed the lamp. These days, I would be able to get things changed as “reasonable adjustments” but, at the time (1980s) no such provisions could be made.


The second incident arose from managers repeatedly lying to me, both in person and in writing, about some crucial resource issues. Eventually, I wrote a memo to a senior figure pointing this out in what were undoubtedly strong terms. For this I was severely disciplined and very nearly fired. Many years later, I was given access to my personnel file and found that this incident had resulted in a memo about me which accused me of all sorts of terrible (and untrue) things. This had been left on my file for two decades. Happily, I was allowed to destroy it, but I suspect it did affect my career progression.


It’s not hard to see the autistic traits here. Autistic people are famously driven by a strong sense of justice and affected by their environment. I had tried to remedy both. What I learned was the limits of my ability to influence and change things. But I did not necessarily conclude that I was powerless. I figured out, slowly, painfully, how to operate within this kind of environment. This was a people-facing job involving many complex interactions every day. How could I manage that? By learning the rules that governed behaviour. I realised that I could easily deliver a conference paper to a room full of academics, whereas I could not have a random conversation with a stranger in a bar in town. I found the rhythm of the academic year, the structures and patterns that govern academic life, the conventions and often incomprehensible rules, strangely reassuring. I worked out how to teach and got the students to like me (I have won several major awards for my teaching). And as my understanding deepened, I began to operate within the structure to improve things, by challenging disciplinary and structural boundaries, by enabling others who shared my sense of what might be possible, and by initiating whole new hybrid disciplines that grew out of my own interests and expertise. I masked a great deal, as I had learned to do as a child, and I suppressed many things about myself, for sure, but I did manage to make progress.


This was not a smooth progression. There were very many failures and missteps, especially when it came to social interactions. For a very long time I made the mistake of assuming that the people I worked with were also friends. Now, so many of them (including the person who gave me the opportunity in the first place) will no longer speak to me. I still have no idea why. But I do know that I have never really been able to fit in with any particular group and of course I now understand that this is an autistic trait. As the years went by, I got better at being able to work professionally alongside people without revealing myself to them too much, so colleagues from the past 15-20 years are generally  better disposed towards me than those from 20-30 years ago. But I remain puzzled and upset by the trail of people who I thought were friends but who turned out to dislike me.


My professorship was awarded following a great success with my research publications. In 2005 I founded a research institute that explicitly combined work from across the university, and I have gone on to do the same at other universities. My moves to these other universities have always been by invitation. I’ve never applied for those posts (indeed, the posts were never advertised). My role has frequently changed within the institutions too, so I have never needed to be interviewed, except on one occasion.


In the late 1990s, I was persuaded that the key to academic success would be to apply for a job elsewhere. I went for the interview and made the elementary mistake of answering their questions literally and in quite an autistic way with information overload and too much enthusiasm. Needless to say, I did not get the job and I resolved never to do an interview again. Years later, I encountered the chair of the interview panel at a conference and he was kind enough to tell me that he regretted my non-appointment, saying: “we now know what we missed”. That was very reassuring. A wise manager once said to me: “the secret to academic success is: stick around”. He was right. The important thing is persistence. It takes me a long time to process ideas, situations, people. With persistence I can get to a successful position. I have never had any particular career goals. I have just followed my nose. But persistence has got me through to where I am today. Never give up!


Finally, I would say that since my identification two years ago I have become increasingly an advocate for autistic academics and students. I work a lot with the academic support people and through the disability forum to improve the lives of colleagues and students. I am trying all the time to help the students to achieve their best and to create pathways that are sufficiently flexible to allow them to succeed. This is an important part of my work. I am grateful for my diagnosis because I now understand how and where to focus my efforts. And I am just beginning to look into contributing to autism research somehow.


*I’ll discuss synaesthesia in another post, but basically it is confusion of the senses, so you can taste colours, for example.




Monday, 24 August 2020

Equality, Diversity and Inclusion in Music Studies

I have been asked to be an advisor to a new university and college network which is still in formation. The network is called "Equality, Diversity and Inclusion in Music Studies". They want me to consult on neurodivergence and disability, which I am happy to do. We had a preliminary discussion last week. I thought it would be interesting to share the notes I sent them after the discussion... 


1. Neurodiversity vs. Neurodivergent

 

Neurodiversity acknowledges the range of brain types and functions and is a normal aspect of human variation. Like biodiversity, having a diverse range of neurotypes is seen as a good thing generally. The term neurodiversity was adopted by the autism community in the 1990s as a way of resisting the dominant medicalised view of their condition. By saying that autism is simply an example of neurodiversity, rather than a "disorder" or an "illness", they hope to overturn prejudice and advance a social model of disability.

 

Neurodivergent, on the other hand, refers to the brain difference itself. Here there is a clear distinction between neurotypical people, whose brains are 'wired' in a similar way, and neurodivergent people, whose brains are 'wired' differently. In the diagram below, neurotypical people show neurodiversity within the range of neurotypicality, but an autistic person is neurodivergent - in other words, outside that group.

 

Autism is real and the differences are profound. Probably the worst thing you can say to an autistic person is "we're all a little bit autistic". This denies their identity and undermines the real differences in neurodivergence. The category of "neurodivergent" also includes other conditions such as ADHD, dyslexia, and so on.


 

2. Person-first language vs. identity-first language

 

A substantial majority of autistic people prefer identity-first language, i.e. "autistic person" rather than "person with autism". See the survey of over 11,000 autistic people at https://autisticnotweird.com/2018survey/ However, the neurotypical world persists in using "person with autism" (see, for example, the BBC) and worse, correcting autistic people who use IFL. The IFL argument is that autism is a fundamental part of a person's identity from birth and in no way comparable to an illness. As a general rule it is best to ask people which form of address they prefer. When in doubt, use IFL for autistic people.

 

3. "Disability"

 

This is a hot debate in neurodivergent circles. To what extent is autism a disability? There is no doubt that it can be disabling, but the more obviously disabling aspects are usually the result of co-morbidities such as learning difficulties or delayed speech development, that are not common to all autistic people. So, the argument goes that autism itself is not a disability, but rather that society makes it so. In this 'social model' there is a difference between the disability of, for example, a person who uses a wheelchair, and an autistic person. However, not everybody agrees with this distinction and it is true to say that it is contested. 

 

4. Environment

 

Dr Luke Beardon's formula: AUTISM + ENVIRONMENT = OUTCOME. This should be repeated again and again. Most adjustments that need to be made for autistic people are environmental. In fact, most of them are quite small and simple to achieve. However autistic people are often unable to articulate what the problem might be in a given environment, so this is something that needs to be worked on over time.

 

5. Check out...

 

Two very different videos. 

 

First, Dr Jac den Houting of Macquarie University on "why everything you know about autism is wrong". https://www.youtube.com/watch?v=A1AUdaH-EPM&t=3s

Highly articulate and brilliantly presented.

 

Second, the late great Mel Baggs 'In My Language'. https://www.youtube.com/watch?v=JnylM1hI2jc

In some ways the opposite of Jac den Houting. Non-verbal. Amateur. Poorly filmed. And yet, this is one of the most powerful statements about autism I've seen and will be especially interesting to musical people since it treats sound highly artistically.