The Autism Spectrum has not collapsed.

Dame Professor Emeritus Uta Frith has recently suggested in an article in the Times Education Supplement that autism should no longer be understood as a spectrum. In her view the category has expanded so far that it has “widened to the point of collapse”.

I think she is wrong. However, I am not going to attempt a line-by-line refutation of her argument. Several other writers have already done that very effectively. I just want to offer some more situated insights.

Speaking from the inside, the expansion makes perfect sense.

I say that both as an autistic person (diagnosed or, as I prefer, “professionally identified” as such by psychologists) and as someone who has spent much of his working life thinking about how different minds organise perception, attention and creativity.

The idea that autism is a spectrum is not an abstract theory to me. It simply and effectively describes the sheer range and variety of autistic people I have known, worked with and read over many years.

For most of the twentieth century autism was defined quite narrowly. It was primarily associated with children who had very visible developmental differences and who were usually diagnosed early in life. Many other people who would now be recognised as autistic simply passed through life under different descriptions: shy, eccentric, obsessive, socially awkward, gifted, difficult. Some struggled quietly, while others built lives that accommodated their differences in various ways.

What has changed in the past two decades is that these experiences have begun to coalesce into a shared language. Adults have started recognising themselves in descriptions of autism. Women who were overlooked in childhood have begun receiving diagnoses later in life. Autistic people themselves have increasingly written about their experiences in ways that were largely absent from earlier research.

To some observers this widening of recognition looks like diagnostic inflation. I believe instead that we have simply become better at recognising autism.

Part of the tension here is historical. Much of modern autism research developed around a set of cognitive theories that attempted to explain autistic behaviour in terms of deficits. The most influential of these was the idea that autistic people struggle with “Theory of Mind”: the ability to infer other people’s thoughts and intentions. This idea, which was partly developed by Uta Frith herself, has been enormously influential and helped shape research agendas for decades. But it has also caused great harm to autistic people.

Once autism is framed primarily as a deficit in understanding other minds, it becomes easy to make assumptions that autistic people lack empathy, lack imagination, or lack insight into their own experience. Those assumptions have travelled far beyond academic psychology to become part of the cultural story about autism.

What has changed in recent years is the arrival of autistic writers, researchers and advocates into a space that was previously populated by non-autistic psychologists. Their presence alone contradicts the idea that autistic people lack a theory of mind.

These autistic writers and researchers have increasingly challenged the notion that social differences can be explained simply as a one-sided deficit. Damian Milton’s “double empathy problem”, for example, suggests that misunderstandings between autistic and non-autistic people arise from differences in perspective on both sides. Communication difficulties may reflect a mismatch between neurotypes rather than a failure on one side alone.

I should add a personal observation here, although it is not a scientific one. In my own experience I often find that I “click” more quickly and more comfortably with autistic people who have significant learning disabilities and little or no spoken language than I do with many neurotypical people. Communication takes a different form, of course, but the sense of mutual understanding can be surprisingly immediate. Experiences like this make it difficult for me to see autism as a collection of unrelated conditions. There is often a recognisable affinity across the spectrum itself. If the spectrum had truly “collapsed”, as Frith suggests, that affinity would be much harder to explain.

The growing diversity of people identifying as autistic is not evidence that the concept has broken down. It reflects the fact that autism was never a single uniform condition to begin with. Even among those diagnosed in early childhood there has always been enormous variation: in language, cognition, sensory experience, interests and ways of engaging with other people. The word “spectrum” was introduced precisely to capture that diversity.

To be clear, I am not especially attached to the term “spectrum” itself. It is often misunderstood as a simple linear scale running from “mild” to “severe”, which is not a very good description of autistic variation at all. A more accurate image might be something closer to a circle, or perhaps a landscape, in which different traits appear in different combinations. Two autistic people may have very little in common on the surface and yet still recognise something of themselves in each other.

It is also not possible to infer very much about someone’s intellectual abilities simply by looking at them. Some autistic people who speak little or not at all have extremely rich inner lives. Equally, people who appear highly articulate, successful and independent may still find themselves overwhelmed in particular situations and, at those moments, require a great deal of support.

My disagreement with Frith is therefore not really about terminology. It is about the argument that the growing diversity of autistic people somehow invalidates the concept altogether. In my view the opposite is closer to the truth.

What has expanded is not the category of autism, but our recognition of how many different forms it can take. My own experience illustrates the point. Once I had the diagnosis, many aspects of my own history suddenly became easier to understand.

Much of my music is built from rule systems, permutations and constraint-based processes derived from areas of focus that are often non-musical. This is a way of working that many autistic people immediately recognise. What I have described as a “stubborn literalism” often gives rise to abrupt formal changes in focus, rather than smooth and continuous transitions.

Only since my diagnosis did I begin to recognise how closely these habits of thought aligned with descriptions of autistic cognition. Ideas such as monotropism, intense focus or Flow and pattern-based reasoning are highly appropriate. The autism was not new. What was new was finally having a name for it.

When I speak with other autistic people, I often hear similar descriptions of attention and perception: a pleasure in pattern, an attraction to detail, an instinct to explore structures very thoroughly. These ways of thinking can sometimes create friction in social environments that rely heavily on implicit expectations and rapid intuitive signalling. But they can also be powerful creative resources.

None of this means that autism brings no difficulties. For many people it involves real challenges, and some autistic individuals require substantial support. But it also involves distinctive patterns of attention and perception that are part of the richness of human cognitive diversity.

From that perspective, the claim that the autism spectrum has “collapsed” looks less like a discovery than a reaction to a changing conversation.

For many years autism research was shaped almost entirely by clinicians and psychologists observing autistic people from the outside. Today autistic people themselves are participating in the discussion about what autism means, as writers, artists, scholars and researchers. What Frith describes as the “collapse” of the spectrum looks rather different from the inside. What has expanded is not autism itself, but our ability to recognise it.

That shift inevitably unsettles some older frameworks.

Autism may not be a straight line running from “mild” to “severe”. It may be closer to the circle or landscape I described earlier: a space in which different patterns of perception, attention and communication appear in many different combinations.

The autism spectrum has not collapsed: it is the people describing it who have changed.

Retirement

Autistic people tend to dislike change, especially fundamental changes to lifestyle and routines, so approaching retirement was something that I viewed with considerable trepidation. I gave the university six months’ notice (rather than the usual three) partly to help them, but also to help me prepare psychologically. It is now a month since my retirement date, so I thought I’d pause to reflect a little from an autistic perspective.

The most dramatic change, unsurprisingly, is to my routines. Many of these were created over time to enable me to get to the end of the day with less drain on energy, or ‘spoons’. So, things like the breakfast routine, with its sequencing of marmalade and coffee and precise timings, existed to prevent me having to think about what I was doing. This gave me more headspace to cope with the anxiety that always built up before a day’s work. The coping strategy involved visualising all the situations I would be going into and scripting likely conversations and meetings. None of that is necessary now, so the whole routine has collapsed. Is this a good thing? I’m not sure, but my wife tells me I seem more relaxed, so perhaps it is.

Certain routines, like having lunch at 1.00 pm, have not changed, so the days are not totally without form and structure. But I can sense myself seeking to create new routines to fill the void. Working in my lovely garden office is helping with this. And I do still have quite a few projects and commitments going on, so they help to provide structure. I think the sense of empty space will really kick in after Christmas when those are over, but probably I’ll find new ones. I have started to get more involved in house and garden activities, and to go to the gym. Perhaps those will also add some routines once I get into the habit. 

The most positive thing is that I’ve now got more time to work on trying to help others. So, I am working with the Leicester, Leicestershire and Rutland NHS Autism Partnership on projects like Autism Space and the Supported Employment Service and I have joined their Board. I am working with All-In Leicester to review venues and we are currently consulting with the people who are redeveloping Leicester Railway Station.  I am also working with ArtReach on a research project funded by the Arts Council entitled ‘​​Developing Disabled Leadership in the Midlands’. 

These kinds of projects, combined with ongoing relationships with my former university and quite possibly another university means that I am transitioning into a retired life, rather than abruptly ceasing work altogether. In fact, retirement to me means just doing work on a different basis, one which resembles somewhat being on the dole back in the 1980s, when I didn’t have much money but did have a great deal of freedom. I can remember from those times, though, how much I struggled with the lack of structure.

One final thing is that my anxiety and stress levels have reduced considerably, thanks to being much more in control of my environment. No longer having a daily expectation of traveling by bus or train into an ever-changing workplace is a great relief. As Luke Beardon famously said: autism + environment = outcome. Here I have an environment that is exactly how I want it to be, so that makes life much more pleasurable. 

Looking back on lockdown

Over a year of lockdown has passed, so I thought it would be interesting to reflect on my experiences from an autistic perspective. Needless to say, these are only my experiences. I do not speak for all autistic people, many of whom have had a very different time, as I well know.

There are many things I like about lockdown. It has made me realise just how challenging it has been to travel into work each day, for example. The sensory issues in commuting alone have drained me far more than I realise. I’ve got used now to ending the day with more spoons, which is a welcome relief. Some days I used to get home from work practically unable to speak or think, or I’d catch the wrong train and end up in Kettering, or some other disaster. Now I end the day tired but relaxed in a familiar environment, which is lovely.

This has meant that I can be somewhat more flexible about routines. Before lockdown, I would follow a very strict sequence of actions every morning in order to conserve spoons for when I arrived at work. So, the morning routine has included the same ordered sequence of washing and ablutions, dressing and eating, packing up my bag and leaving the house, every day for years. My main problem in lockdown has been that Frank Cooper’s Original marmalade, which I eat in Spring and Autumn (Fine Cut in Summer, and Vintage in Winter) seems to be completely unavailable. So I am eating Fine Cut out of season, which is a bit disturbing, but in the grand scheme of things not a major problem.

I generally find social interaction online preferable to face to face. It is entirely predictable and managed. There are no unstructured meetings or casual encounters. Whether it is a management meeting, a class, or just a “zoom coffee”, I know about it in advance. I enjoy that I don’t have to work at reading body language. Again, it has been lockdown that has made me realise how much effort that took every day. People often say that autistic people cannot read body language. I’m not sure that’s entirely true. I spend a large amount of time reading body language, because I understand that it is an important method of communication amongst neurotypicals. I’m not saying that I really understand it, but I am pretty good at spotting details and often notice things that others miss. It does require a lot of effort, though, so it is a great relief not to have to do it.

However, this absence introduces a new anxiety: have I now lost the skills to be able to decode body language and facial expressions? Those would take an enormous amount of work to rebuild. I have noticed that I am losing the ability to pretend not to be autistic. Now, many people will say that’s a good thing because masking is bad and we should be authentically ourselves. I would not disagree with that point of view, but the problem is that I then lose confidence in my ability to interact socially and start to become anxious about meeting people at all. Over the last few months I have started to get nervous before I meet someone. This is unusual for me and potentially a big problem in my line of work. 

There has been a major downside in interacting online with my students. They simply refuse to switch on their cameras, so I would not recognise any of them if I met them face to face. This is very strange. They know exactly what I look like, but to me they are just circles with initials inside. This creates quite a pressure on what will follow when we finally do meet. One other problem with online interaction is automated captions. Because of my hearing impairments, I do rely on these quite a lot. But the error rate is quite high and they can create as many barriers as they remove. An example of technology not being good enough for its intended purpose.

One benefit of all the extra energy I have saved up is that I have become much more active as an autistic advocate, both at work and in the world at large. Again, I think lockdown has contributed to that development. It has been easier to sign up for things, such as advising the NHS in Birmingham, or giving a presentation about my experiences to an EDI conference at Edinburgh University (both things in my calendar for this month) when I know that I don’t have to travel to a new place, meet people, etc.

My main anxiety at the moment is the end of lockdown. I really do not want it to end. I am not looking forward to going back onto campus with its chance encounters, random events and sensory challenges. My university’s campus is pretty typical. Every building is a mess of flickering fluorescent lights, asymmetrical patterning, haphazard “design”, high arousal colours, confusing signage, noisy spaces, drifting smells, bizarre heating, reflective surfaces, and so on and so on. On the plus side, my office is nice and quiet and hidden away, so I can be fairly surreptitious. If all the buildings were more autism-friendly it wouldn’t be so daunting, but I’m afraid they are pretty horrid. I’m trying to change that through my work on the disability action group, but it is not easy.

Overall, then, I find lockdown quite agreeable, and I am not aware of any negative impact on my mental health - quite the reverse, in fact. But I do have some anxieties and I am noticing some changes in myself. To what extent these will become a major problem remains to be seen. My survival bag, which would never leave my side before lockdown, has now been gathering dust in a corner for over a year. I am going to have to get it out soon and check that everything is fully charged up and up to date, from the noise-cancelling headphones to the personal air purifier, from the sunflower lanyard to the clip-on shades, and so many more bits and pieces that I use to make life tolerable. That will be a big moment!

The 'Neurotribes' conference, Sound Festival Scotland.

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

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

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

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

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

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

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

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

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

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

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

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

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

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.