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.

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.

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.

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.

 

 

 

"In-between" social interactions

My career has always involved me in large amounts of social interaction, with colleagues, with students, with the wider public. When I understand the structure of that interaction, what the rules are, then I can generally perform well. Interacting professionally while at work is mostly fine. But it’s a different story when the rules become fuzzy, or non-existent. 

Casual social interactions, including chat, and especially with strangers, are generally problematic. Mostly I avoid them, but when they do happen I can find it an enormous effort to maintain what I now recognise as a mask. I generally do it by collaging together snippets of other conversations I have overheard or viewed in movies or on TV. Another technique, which remains a favourite, is to visualise what everybody is saying, as they say it, as though it is written dialogue in a book. Sometimes I use a play format (ME: xxx, INTERLOCUTOR: xxx) and other times I envisage the pages of a novel, complete with “he said ... she said”s (sometimes with adverbs!). Either strategy takes me out of the situation and able to view things more analytically, but it is an effort and I think perhaps sometimes the other person senses something is going on and doesn’t like it.

But I have been musing recently about in-between situations. By “in-between”, I mean social interactions with professional colleagues outside work or, rarely, with non professionals (e.g. family) in a work setting. 

Music is a social activity. To become a Professor of Music requires social interaction, not just in the making of music but also afterwards, generally in the pub. During my years working in music, I could expect to find myself in such situations at least once a week with colleagues, or a mix of colleagues and students. 

My special ability as an autistic person is to make connections between ideas or things that other people cannot see. Situations like this, often helped by a little  inhibition-removing alcohol, would liberate my flow of thought in ways which could be transformative for others. I have ample evidence, in the form of correspondence and people’s histories, of the truth of this. I have had an enormous influence on many academic and professional lives. Some of my conversations have led to innovative educational initiatives, large-scale funded research projects, book publications, new artworks, professorial promotions, and even changes in people’s personal lives. 

What I would do is to take the interests or expertises of visiting Professors, PhD candidates, undergraduates, academic colleagues, and connect them with other things or people of which they were unaware, or reframe their ideas in ways that had never occurred to them. To do this, I would draw on my vast reservoir of knowledge (some of it very obscure) built up from my autistic interests over the years. Furthermore, I would hyper-focus on all the people I was talking to, making unexpected connections between what I understood of them and their work or interests. It was a bit like the way I would listen to all the instruments in an ensemble and then hear the relationships between them. People who knew me well would recognise the process, to the extent that my name actually became an adjective for that kind of thinking. 

But for this to happen, I had to have an entirely willing audience, and this was not always the case. Some people, understandably, did not like how I could dominate the conversation. I think I alienated quite a few that way. If I did not see an opportunity to speak fluently, I would fall completely silent. People would comment “you’re quiet tonight”. If I then tried to speak, things could quickly go wrong. I now understand why that happened, but at the time I really had no idea. In some cases, the mistakes I made were terminal and some people have never spoken to me again, even though we were close at the time.

The deterioration of my hearing in 2009 meant that I moved away from Music into Computing. One result of all that has been a great reduction in my social life and these days I rarely find myself in such situations. I don’t really miss them much. My ideas remain as fluidly transdisciplinary as ever. I find ways to convey them through other means involving much less social pressure. The autism identification has helped me to realise what was actually going on during those conversations, and I think I would be more conscious of that today. This is not a bad thing. It means that I would be more forgiving of, and able to explain, any negative effects, rather than just becoming confused as I did in the past. It also means that I would be able to see the beneficial aspects of neurodivergence and provide reinforcement of that for others who might be in a similar position.

"Getting it wrong"

In this very interesting interview on @WorldAutistic's podcast, Luke Beardon makes the following statement:

"My view is: if you are autistic and you don't know it, then you judge yourself against the wrong set of criteria and you end up with very low self-esteem and all sorts of problems with society, because you blame yourself for not understanding situations or maybe "getting it wrong", when actually you're not getting it wrong at all - you're just filtering information in an autistic way without realising it."

This resonated so strongly with me and describes my entire life. It probably explains why I was unable to form a lasting relationship until I was in my late thirties. It still applies, even though I understand what is going on. I just cannot get past this autistic filtering of information. It is the way I am.

In the past, it would cause me distress as I tried to figure out what I had done wrong. My history is strewn with miscommunications and misfires, usually in supposedly 'normal' and 'relaxed' social situations. Something was always wrong, but I could never understand what it was and ended up blaming myself. Structured interactions, such as professional situations in universities, tended to be more satisfactory, because I (mostly) understood the social conventions.

Post-identification, this still goes on. I continue to blame myself for what I believe to be my mistakes, because I do not understand the social rules. Fortunately, my wife can put me straight most of the time, but it causes me anxiety just the same. However, the self-knowledge that has come from the diagnosis has led me to be more accepting of this state of affairs. 

Which leads on to the wider question: whether what I have done was ever in fact "wrong" at all. This is implied in Luke's statement. The argument goes that it is society's problem that it cannot accept that I am the way that I am. I have certainly judged myself against the wrong set of criteria in that case, and this is something I am seeking to change. What makes it so hard is the accumulation of thousands of mental scars over a lifetime of errors, both small and large, all of which I remember in great detail, right back to childhood. Before my diagnosis, these would puncture my thinking constantly and cause me to shudder. Post diagnosis they still occur, but now I am more forgiving of myself. 

There is an interesting philosophical debate to be had about the nature of transgression. The things that are “wrong’ may not be wrong in an objective sense, and certainly not in terms of an autistic person's own nature, but may be socially constructed as wrong in a society engineered for, and by, neurotypicals. To what extent are they really wrong? Who makes those judgments, and why?

Some thoughts about music

This is the first post in what will be a series reflecting on the ways in which my autism has affected the way I listen and hear, and the consequences of that for my subsequent involvement in music as a composer, performer, musicologist and ultimately Professor of Music. My involvement with music has reduced considerably over the past decade thanks to serious hearing problems brought about by Ménière’s Disease. I can’t really listen to or make music comfortably any more. But it remains very important to me, even though I am nowadays more involved in computing.

I can remember having piano lessons as a child and being fascinated by the sound of the instrument. I now realise that I was hearing the interiorities of the notes in a way that others did not. Today this would be called ‘spectral listening’ and is a staple of electroacoustic music, but I know I heard in this way instinctively all along. Sound is made up of harmonics that vary over time. A musical ‘note’ is in fact not a single pitch but a complex chord made of these shifting relationships. The perception of a single pitch comes from the fact that one harmonic is louder than the rest. I have always heard many of the harmonics and the way they change.

In addition, my listening was complicated by the fact that I also heard environmental sounds that blended with the instrument. It was hard to separate these out. For example, fluorescent lighting and electricity generally emits a sound which combines with musical sounds to create confusion. I assumed everybody could hear this, but I now know they could not. For me, it conditioned what I enjoyed in music a great deal.

Most of the standard piano repertoire I was given to learn I found tedious, because to my ears the sounds lacked granularity. I now understand that this was due to the ways in which the piano is engineered. The wire strings, sound board and above all tuning of the instrument combine to create an evened-out series of pitches called equal temperament, a complicated tuning system which divides the octave into 12 equal steps on a logarithmic scale with a ratio equal to the 12th root of 2 (12√2 ≈ 1.05946). Unaware of this, I had a more straightforward, visceral response to the “well-tempered” piano, and only really got interested when I was given more discordant music to play, by composers such as Bartók and Hindemith. These seemed more in tune with the instrument than Mozart etc.

My school had an extensive record library, so I sat down and listened to the entire collection from A-Z in alphabetical order, something that I now understand was quite an autistic thing to do. I was rigorous about it, and I loved the cardboard sleeves that housed the LPs (I can still see them now in my mind’s eye) and the organisational system of the library. Fortunately for me, one of the early records I encountered was a box-set entitled ‘avant-garde’. I adored the works by Stockhausen, Ligeti, Kagel and Berio on these records. I remember being so excited by Stockhausen’s ‘Gruppen’ for three orchestras because it seemed to depict the way I normally heard. 

There may be something here that is more generalisable about autistic people’s preferences in sounds. It would be fascinating to test this as a hypothesis. All I know is that I was drawn to atonal music at that time (I was 13/14). A few years later I had the opportunity to attend the premiere of Peter Maxwell Davies’s ‘Ave Maris Stella’ at the Bath festival. The piece (which I greatly enjoyed) contained a marimba solo. The low notes on the marimba took me into a world of sound that I never really left, and many of my compositions subsequently included marimba. It was the resonance, which I learned was effectively in just intonation, rather than the engineered equal temperament of a piano note. I was hearing, possibly for the first time, what genuine consonance meant and, lo and behold, it wasn’t boring at all! As it happened, I sat next to the local music critic, who absolutely hated the piece. He was following the score and afterwards, seeing my enthusiasm, very kindly gave it to me. He was pleased to see the back of it. I spent much time replaying the sounds in my head using the score as a guide.

The result of all this was that I left school with what would be considered rather advanced tastes and a comprehensive knowledge of music, which I carried forwards at degree level. I had very acute pitch perception including an ability to listen to every separate instrument in an orchestra as they played simultaneously, strong audiation skills (hearing in my head while reading a score), and excellent abilities to discern and analyse structures and patterns. There was also a synaesthetic component in which certain notes and chords became associated with colours and tastes in my mind. “Synaesthesia” means, literally, confusion of the senses and I have always had it to some degree. So, colours become tastes or sounds, certain smells become colours, and so on. I became fascinated by other synaesthetic composers such as Scriabin and Messiaen. 

Another example of what I now consider to have been an autistic trait, was my ‘party trick’ of identifying pieces of music by ‘reading’ the grooves on an LP. I would look at the fine grained patterns on the surface of the disc and read them as a kind of score. It was not completely infallible and only worked with music that I already knew, of course, but it used to impress people quite a lot, as I recall.

But all these abilities could be easily thrown off-kilter by what I now recognise as hyperacusis (an increased sensitivity to certain frequencies and types of sounds). Elements of the soundscape could intrude and distort my musical perception. Everyday sounds like the clatter of cutlery would cause me immediate distress, which I would then have to overcome. Too many of them could lead to overload and would interfere not just with my hearing but also with rational thought. As my hearing has declined, it has become harder and harder to listen ‘past’ these sounds. Loud noises like these can lead me to shut down.

Aspects of listening to soundscape which others would regard as strange were commonplace to me, so listening to motorways, to fridges, to engines, and being able to separate them into their acoustic components was something I did constantly. I would frequently sing along to them! So when I encountered John Cage’s music, and his mantra “let sounds be themselves”, it felt like a homecoming. This inclusion of what would otherwise be regarded as either non-musical or, worse, noise, was what attracted me to electroacoustic music. I have frequently used non-musical sounds in my own compositions, weaving them with musical sounds to which I respond.

Father's Day

My Father died in 1979 of a heart attack. It was his third major coronary, but even so it was a shock.

I was in my second year at university and, despite high academic success, having a rough time personally. I had ongoing problems with my throat (quinsy) which resulted in an  operation, but also psychological issues which I now recognise were down to my undiagnosed autism. The psychiatrists and doctors I saw at that time completely failed to spot that problem, which is not surprising given the state of autism diagnosis in those days.

Looking back, I think my father probably tried his best to deal with me. He was ill-equipped to do so. As a traditional Christian disciplinarian, his only frame of reference for me was wilful disobedience, as I failed to conform to everything he expected. I was constantly disapproved of and frequently punished. The only time that changed was in my first year at university when I achieved very high marks in exams and was top of the class. For the first, and possibly only, time in my life, he showed genuine approval of my achievements.

But how could he have done so? I was a composer, something that was completely alien to him, and I refused to follow him into the family engineering business. I was terrible at sport, which he loved. But most of all my brain just would not function in the way he thought good. We had so many challenging encounters it is hard to describe them in detail, but the gist of them was that I thought in a divergent way whereas he was entirely convergent. In other words, any initial stimulus would set me off into a train of speculative reasoning that led to creative outcomes, whereas he wanted to gather facts and information in order to find a straightforward solution to any problem or situation.

“Look at me when I’m talking to you!” he would shout as, yet again, I failed to make eye contact. “It’s just common sense!” “Are you thick or something?” And, most tellingly: “you’re just trying to be different!”. The problem, I now know, was that I am different. I’m not trying to be anything. I am simply ‘wired’ differently. What he saw as wilful disobedience was just honesty. I was never a naughty child.

I try to be fair to him, despite the fact that I had to go into counselling some years later to try to resolve the many issues in my relationship with him. The counsellor also failed to spot my autism, once again because autism was not well recognised at that time. But my memories of my father are often negative. We were very different. I read voraciously, whereas he was proud of never having read a book in his life. He was an authoritarian right-winger who strongly supported Margaret Thatcher, whereas I was always left-leaning and believed in freedom. He seemed to dedicate himself to diminishing and suppressing me as much as possible.

But I do wonder whether, had I had an autism diagnosis then rather than now, would that have changed his attitude? I think he did have the capacity for sympathy and understanding. He struggled with me because he was frustrated by me. He went away to National Service and returned when I was three years old to find a difficult and problematic child. He probably blamed my mother for that. If only he had known, perhaps life could have been very different…

Lockdown thoughts

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

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

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

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

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

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

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

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

Book Review: 'Avoiding Anxiety in Autistic Children' by Dr Luke Beardon

Book Review: 'Avoiding Anxiety in Autistic Children: A Guide for Autistic Wellbeing' by Dr Luke Beardon. Published by Sheldon Press. ISBN-10: 1529394767. ISBN-13: 978-1529394764. Paperback: £10.99. Kindle: £7.49. Available from 10 December 2020. Pre-ordering available on Amazon.

I was sent an advance copy of this new book by Luke Beardon. I was initially cautious about reviewing it, because I am hardly an expert on children. However, it soon became obvious that I am in fact perfectly well qualified, because I was an autistic child myself once and can remember that experience in detail! So, here is my review:

The very existence of this book is a mark of how far we have come as a society in our understanding of autism. This will be small comfort to the many thousands of autistic people whose anxiety levels remain high, because the lessons Dr Beardon teaches us have not yet been learned by wider society. Indeed, the book begins with a powerful statement by the author, who hopes that it will "swiftly but surely get removed from the bookshelves" as its insights reduce anxiety. This is probably a distant dream, because anxiety remains such an enormous issue, and not just amongst children. 

‘Avoiding Anxiety in Autistic Children’ is written with Luke Beardon's trademark mix of a highly readable style that is approachable for non-academic readers, coupled with a deep understanding of autism built over many years of research and observation carried out at The Autism Centre in Sheffield Hallam University. He distils the wisdom of autistic experiences in a way that speaks directly to the individual reader. He is keen to emphasize the differences between autistic children and so avoid falling into a trap of over-generalisation. To achieve this, he supports his text with numerous first-person case studies from autistic people. This leads to a remarkable book that alternates between moments of deep recognition and precious insights. 

Beardon expands his foundational equation "autism + environment = outcome" with new ones, such as: "the level of enthusiasm shown for a passionate interest = the amount of pleasure a child gets from it" and "the better informed the child is = lower risk of anxiety". These principles underpin a series of calls to action or advice for parents and educators and anyone involved with autistic children. Since these recommendations come from a position which seeks to improve life for autistic people, they invariably make sense to this reader. My most frequent reaction was a wistful "if only people had understood that when I was growing up!"

To take just two examples from the many that stood out for me: he includes "fear of getting it wrong" as a common cause of autistic anxiety and demonstrates with many supporting examples how it can lead to a dangerous state of affairs in which the child is inhibited from trying anything new; he also describes very well the destructive tension between a strict adherence to the rules (e.g. following a timetable to the second) and not knowing what the rules are (e.g. the unwritten rules that bedevil social interaction).

One particular interesting comment was the suggestion that autistic children "would actually be better suited at Doctoral style learning than secondary age educational systems". This led me to speculate what an autism-friendly curriculum, which actively encourages intensely focused interests, might look like. I also would have liked to see even more discussion of exams, which are such enormous sources of anxiety for all children but often especially for autistic children. To what extent is the increased testing regime which permeates education a cause of increased anxiety in autistic youngsters?

The general methodology in this book is to explore the extent to which external factors influence autistic people. This is a positive approach, because it shows how important environment can be for anxiety regulation. It teaches adaptability and flexibility and advocates passionately for an increased understanding of autistic children. It is of some comfort to realise that there is now a significant work by one of the leading experts on autism that elegantly summarises the important issues in such a readable and authoritative way.

Medical perceptions

I’ve encountered medical people both as a patient and professionally as colleagues. By ‘medical people’, I mean doctors and nurses, but also medical scientists and consultants. I’ve worked with surgeons and clinicians in research contexts, but have also received care and treatment from GPs and specialists. It’s interesting to see to what extent the so-called ‘medical model’ really exists in medicine.

The medical model treats symptoms as signs of an inner physical disorder. If the symptoms are connected, then this can add up to a syndrome. In disability, this is a ‘problem’ that affects the individual, and only the individual. In other words, any disabling effects are a consequence of the disability itself, rather than any external circumstances.

The social model stands that on its head and proposes that society disables people by designing the world to suit a majority who are not themselves disabled. It should be the responsibility of society, rather than the individual disabled person, to reduce or remove barriers.

Autistic people, myself included, tend to favour the social model for a number of reasons. It resonates very well with our lived experience amongst non-autistic people who do not seem to understand us and who we in turn apparently do not understand. It situates the model outside 'disability', which can be a problematic term because it describes well the co-morbidities that often accompany autism, but not necessarily the autism itself. It is more accommodating of hidden disabilities. And so on.

My experiences of talking to medical people vary greatly and range across both the medical and social models. My GP, for example, is very accepting of my diagnosis and aware of the issues that arise from the social model. In fact, the very existence of this blog is at least partly down to her encouragement. She says that I have some kind of prominent position and should therefore become what she calls a “champion of autism”. 

Others have been less sympathetic and in some cases quite dismissive of both the social model and my diagnosis. These conversations have been challenging but thought-provoking. The essence of the argument seems to be that the very idea of an autism diagnosis is meaningless without a set of recognisable physical symptoms. I like to compare my diagnosis of Ménière’s Disease (which is not really a disease, more a collection of symptoms) with the autism identification. In the former, the consultant was able to observe and measure a set of symptoms, most notably vertigo and severe hearing loss. The latter was a judgment call by psychologists based on interviews and other documentation. 

To that extent I would agree with the medical model, inasmuch as the very idea of ‘diagnosis’ seems misapplied. I discussed this in previous posts. But of course this does not deny the social model, which is very real. And in the end my own knowledge of autism as lived experience confirms its reality. I don’t just feel autistic, I am autistic. The difference is an actual difference. The medical model does not go far enough if it relies solely on observable and measurable symptoms. 

From a personal point of view, some of the discussions I have had have been hard to take. Sometimes, the medical colleagues are extremely dismissive, both of my diagnosis and of the psychologists who made the diagnosis. My evident ability to function well in an academic context is confusing. They know me as a Professor, and therefore high-ranking within academia. They compare that with their knowledge of autistic people who exhibit the kinds of ‘symptoms’ they would recognise: perhaps non-verbal or showing other obvious signs of ‘impairment’. One colleague tried to undermine me by declaring that “we are all human” and therefore that there can be no such thing as neurological difference. 

At such times, I struggle to remain balanced and rational. This looks to me very much like a failure of the medical model and confirmation of the social model. It makes me feel disbelieved and attacked, coming as it does from an authoritative source. At the same time, I think this is not quite as straightforward as it might appear. In some respects, the medical/social opposition is itself an illusion. If I consider my tinnitus, for example, the doctors will always recognise its existence and debilitating effects, even though there is actually no way to measure it. And some organisations, such as the British Tinnitus Association, go well beyond a purely medical understanding of the condition.

The issue seems to be autism itself, whose recent history is, I think, quite problematic for both society and the medical profession. To some extent, it is a construct, resulting from a set of understandings that have evolved over several decades, as we know. As such, it is itself a socially-derived condition whose very existence is a challenge to medicine. Be that as it may, I can only speak from my own experience as an autistic individual. I know that it is real and I am amazed by how accurately the psychologists are able to pinpoint and describe my lived experience. Also, I relate to other autistic people in ways which I do not to the rest of the population.