"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. 

Fire drill

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

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

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

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

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

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

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

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

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