"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.