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.

Dealing with scepticism

Lately, I’ve found myself repeatedly trying to explain to people how my autistic experience differs from their neurotypical one. I'm often asked about this: how I perceive the world, how I relate to people, how I think, how I process sensory information, and so on. I like to talk about it, not in order to put myself at the centre of the discussion, but to try to make a connection with others. I’ve always done it really, but before I was diagnosed I did not know exactly what I was doing. 

Most of the time, people respond with interest. I’m good at articulating things and they seem to appreciate that. Perhaps they are just curious, or perhaps something I say resonates more deeply than they expect. While it can be exhausting to translate my lived experience into terms they can relate to, I persist because I have a sense of responsibility to advocate and to try to counter some of the negative myths that surround autism.

But every so often, I run into someone who, for reasons of their own, decides to tell me who I am not.

It usually begins innocently enough, perhaps with a compliment like “I can’t believe you’re that age!” (I’m 67). I do look young for my age ( many autistic people do), but what starts as a friendly comment often morphs into something more sceptical.

Sometimes the first target is my balance disorder and hearing loss. Those are both invisible disabilities, so they’re not always easy to spot, especially since I subtly use a lot of technology to help mask them. But demonstrating their reality is generally fairly straightforward, because they are “measurable”. I shouldn’t have to do it, but occasionally I have actually shown someone my audiogram to prove the point. 

But those are not the heart of the issue. What people really want to contest is the autism. The scepticism takes forms that will be familiar to other autistic people:

“But I have some of that myself.”
“You’re just trying to be different.”
“Everyone I know has a diagnosis these days.”

What’s being questioned here is not just the label, it’s the validity of my experience. Beneath these remarks lies a suspicion that I’m exaggerating, mistaken, or seeking attention. 

I suspect part of the problem lies in the language I’m forced to use. When I try to translate autism into language that neurotypical people will understand, I have to describe lifelong realities using words that, in their world, describe fleeting, temporary things. For example, whereas I may be over-sensitive to certain sounds, disoriented by some lighting, violently distracted by certain fabrics, or overwhelmed by particular smells, they will experience the same thing as a temporary annoyance that can be filtered out. Likewise, if I talk about hyperfocus and attention tunnels, they will think of being absorbed, unaware that for an autistic person the cognitive resources are so dominated that switching out is difficult. Similarly, masking = just putting on a professional face, or playing a role. Literal or patterned ways of communicating, or in my case scripting, are just seen as enjoying clever language and not a core identity. The absolute need for predictability and routine translates into a flexible desire for the same in certain situations. The ongoing background anxiety caused by social and sensory issues in the environment becomes temporary stress triggered by specific situations and not tied to the basic structure of everyday life.

I recently wrote: “I’m not trying to be different. I’m just not pretending to be the same.” That sums it up really. I don’t seek difference, I live it. Yet I’m occasionally treated as though I’ve chosen this path for dramatic effect, as if autism were a lifestyle or a fashion statement, rather than a fundamental state of being. Someone wrote to me recently “you’re not the person you pretend to be”, which is about as double-edged a “compliment” as it is possible to get.

Translating lived experience across neurotypes is always difficult. But I wonder why I have to defend myself so often against this kind of scepticism. I can see that my advocacy opens me up to challenge, especially since I have chosen to make my autism public. It would be easier, in a way, never to mention the fact and to leave it out of the conversation. 

At the same time, I think it is important, since I am a reasonably prominent person, that I challenge people’s expectations. Just because my neurotype or disability does not conform to what they expect does not mean that I should have to minimise it to make it more palatable. It’s a simple gesture of respect to listen to and believe others when they speak about themselves. And that small shift - from doubt to trust - can make a world of difference.

GLOSS: autistic web design, part 1

I've been commissioned by the Percy Grainger Society to review their website named GLOSS (Grainger Library of Sampled Sound) and to suggest ways it could be expanded to make it suitable for use by neurodivergent people. Here is their press release. We established fairly early in the process that I would focus on autistic users, rather than the whole of neurodiversity, because that is the area of my best expertise and because we want the site to have a clear sense of purpose.

I have had a longstanding interest in Percy Grainger (1882-1961), who was an Australian composer and pianist who ended up living in the USA, specifically in White Plains, New York. He is best known for his folksong arrangements and "light" compositions such as Country Gardens, but there is a great deal more depth to his work than this would suggest. In particular, he was a great experimentalist, composing chance-based music decades before John Cage and devoting the later decades of his life to a completely unique form of electronic music that he called 'Free Music'. There's a good summary of his life and work on the Percy Grainger Society website.

I've often wondered why I am interested in Grainger. It's not as though I am a folksong enthusiast, an aficionado of light music, interested in military bands, or a massive fan of all things "Nordic" (which was his passion). What I have come to realise is that he was probably neurodivergent himself, as a read of his correspondence will confirm. I won't give him the label "autistic" (retrospective diagnosis is always risky) but it is pretty clear that his brain worked in a decidedly atypical way. He had several "special interests", some of which have been the subject of disapproval or even condemnation. I'm not going to express a view on that, but I would say that any autistic person would recognise the extreme focus and obsessive nature he exhibited. Most importantly, his dedication to pursuing an alternative view of music based on the sliding tones he saw in the shape of the landscape or the ripples in the water went well beyond the kind of dispassionate, quasi-scientific, enquiries of the people working in the electronic studios at Princeton, for example. 

I have completed my initial review of the GLOSS website and will be reporting to the Percy Grainger Society later this month. When that exercise is complete, I will publish the key findings here. The next step will be for me to create some original soundscapes using the materials on the site, which I will also share. The project is due to end in December, when I will publish a full academic article, but I will also discuss the main findings from a purely autistic perspective here. Watch this space!

Awaydays, and how to include autistic people

Awaydays have become commonplace in most organisations. They are a day-long event for employees and managers to spend time away from their usual workplace or environment. They typically include team building exercises, training, or brainstorming activities. They are mainly used in the belief that a change of scenery would enhance creativity and relaxation. 

In practice, many awaydays have gradually lost this original sense of purpose. They often take place just in a different building or room on site, so they are not really ‘away’ at all. They can be full of unstructured or very loosely structured exercises using lots of post-it notes. They are frequently characterised by a sense of futility. This erosion of what seemed like a clear concept reflects their true function: to enable neurotypicals to feel more comfortable with one another. Sometimes the group will bond together in disapproving of the awayday itself. Funnily enough, that outcome can be productive.

From an autistic perspective, this amounts to a nightmare. Awaydays cause more anxiety and distress than almost any other activity. Having established a working pattern and set of routines at work, the autistic employee is suddenly required to stop all that in order to undertake a series of activities that rely on social interactions whose purpose is often unclear and in an unfamiliar environment that may or may not be well suited. 

Since most organisations contain autistic people, it is very important to plan awaydays effectively and inclusively. Here are a few thoughts. N.B. These are just my thoughts - others may disagree or want to add things!

First and foremost, an awayday needs to have a clear purpose, a set of aims and objectives. That should include a statement of why it is necessary to go away, rather than staying in familiar surroundings. If you cannot come up with a convincing reason for going away, then please don’t do it!

I would strongly recommend having autistic people involved in the planning. It seems obvious, but they will be best placed to advise on what will work and what will not.

You should provide information and guidance well beforehand, including an accessibility map and, preferably, a video, or at least photos, of the venue and the approaches to it. There should be a quiet room available and you should have adjustable non-fluorescent lighting and use microphones for speaking. 

You should space out noisy activities or, preferably, segregate them into separate areas. Avoid using balloons or other objects which may cause distress. Make great use of visuals, signs and timetables. Provide a clear running order, highlighting anything particularly bright, noisy or unexpected.

Every activity should be clearly structured, with a defined purpose and statements in advance about what is expected. Give people the option to drop out if need be. Never make “one size fits all” assumptions. Make sure that you know in advance if there are to be any fire drills or alarms. Those can really disrupt everything, for the whole day.

If you want to encourage unstructured social interaction (of course, there is no reason why the entire day should be made just for the benefit of autistics) then signal that clearly and give people who do not want to participate some acceptable way of ducking out. At some autistic events, people wear coloured communication badges to indicate whether or not they are open for conversation.

Bear in mind that autistic people can take longer to process information and may also struggle to explain how they are feeling, so build in plenty of space and time to get the best results. It’s ok to get personal – autistic people love talking about themselves! – but only in a way that gives the sense that we are contributing to a worthwhile exercise. In other words, there has to be an obvious reason. Avoid indirect and metaphorical speech and, obviously, expect social communication that lacks real and clear meaning to be greeted with incomprehension or anxiety.

To summarise: if the autistic person understands the reason for everything, can follow a clear structure and schedule that is stuck to rigorously, and is encouraged to share their insights, then you can get great results. On the last point, be ready: autistic people can talk for an hour or more without stopping on certain topics. It’s a good idea to specify before asking someone a question whether you want a short answer, a long answer, or a very long answer!

Finally, check in on spoons https://en.wikipedia.org/wiki/Spoon_theory Most autistic people have a sense of how they are doing during the course of a day. Ideally, you want to end an awayday with enough spoons to be able to get home safely. If spoons are getting dangerously depleted, then please allow the person to duck out, to avoid having a meltdown or shutdown later.

Unconscious Bias and Autism

Recently I have undertaken unconscious bias training. This will probably be familiar to anyone who works in a large organisation, but for those who have not come across the idea before here is a brief summary. 

I should say at the outset that I think unconscious bias is real and the training I received was effective and made its points well. There is a paradox at the heart of the matter, though, which is this: once one becomes aware of unconscious bias, it is no longer unconscious and is then just plain bias. That tends to reduce the amount of self-forgiveness available (given that we all have these biases) which is a bit tough to take. But so be it.

My purpose in this post is specifically to think about how autism and unconscious bias may or may not connect. Of course autistic people are just as likely to exhibit unconscious bias as anyone else. However, there may be differences in the way it works.

During the online training, there was an exercise (not part of the final test). We were presented with nine images and asked to group them into three groups. I immediately saw that three of them were red, three blue and three yellow/green. So I dragged and dropped them into those groupings. It did strike me as slightly odd that yellow and green were together, but I quickly rationalised that by thinking of the colours of the earth wires in a plug.

I clicked the “submit” button and the system responded:

“That’s an interesting selection. Most people would have grouped them as cars, lorries and motorcycles”.

I was stunned and, to be honest, felt rather foolish. Making taxonomies is a frequent part of my research work and yet it had never occurred to me to group the images by what they depicted! I thought of Magritte and his “ceci n’est pas une pipe”. Perhaps a lifetime of contemplating surrealism had led me to disregard depiction and focus on the properties of the image itself? But no, that was not it. It was just my autistic brain doing what it does. I realised that my interest in surrealism has probably been a way of seeking to understand its processes all along. Another moment of epiphany!

But now my attention turned to the training and the comment “Most people would have…”. I began to feel very different. Of course, autism means I do not think like “most people”. I started to resent the tone of the comment, which then led me to ask: is the test itself showing unconscious bias? 

The test was designed to make a simple point - that we unconsciously tend to group people based on appearance. But what if your whole way of grouping people is not at all based on the way they appear, but on some other attribute? I’ve never understood racism, for example, because skin colour and the various other stereotypical characteristics are just not what I notice. Does that mean I have no racial bias? Probably not, but it is buried under a mountain of other stuff that filters it out, on the whole. I unconsciously group people, for example, by the extent to which they try to make eye contact, or by the sounds they emit, or by their smell. I’ve always done that. I know that racism exists, and I hate and try to resist it when I find it, but I don’t understand it. It just makes no sense.

The same is true of body language and eye contact. I’ve done quite a few interviews recently and the HR guidance we’ve received emphasizes the importance of not giving the wrong impression to candidates through inappropriate body language. And of course I, like everyone else who uses Powerpoint, have seen the kind of advice, or even assessment criteria, that give plus-points to a presenter who makes “good eye contact” and shows “positive body language”. 

Whenever I encounter these kinds of advice, which are everywhere, I kick back against them by pointing out that not everybody can control their bodies and not everyone is able to make eye contact. Why should people be penalised for that? Is it not the very essence of bias to do so? I am deeply sceptical about the very concept of “body language”. Like many autistic people, I have spent a lifetime studying it, trying to figure out what on earth neurotypicals are communicating, or believe they are communicating. What I find is that there is a kind of “language” there, but it is one that continuously reveals untruths, deceptions and confusion. People use body language to reassure others, but in doing so they frequently engage in a collective self-deception that is comforting to the group, I suppose, but also delusional.

Here, it seems to me, is a real unconscious bias: against people who do not appear to go along with these incredibly subtle modes of non-verbal discourse. Since people do not understand body language, but just deploy it “instinctively”, they are completely unaware of the extent of its influence on their attitudes and decisions. It would be extremely difficult to unpick this in practice, and I imagine that nobody would be motivated to do so, so it looks to me that this kind of bias is here to stay and will escape my paradox by remaining perpetually unconscious. 

So, to get back to the training test, I’m afraid I did come to the conclusion that it was designed by neurotypical people for neurotypical people. The slightly sneery comment the system made just reinforced this impression. As an autistic person, I tend to view neurotypicals as a separate group, almost a different species. I guess that could make me biased against them, but I have spent a lot of my life trying to measure up to their standards, so actually I tend to think I am more biased against myself. Autistic advocates call this “internalised ableism”, which is about right. I reckon many of the difficult moments I’ve had in life have come about because of this failure to understand that I am judging myself by the wrong criteria. Now that is unconscious bias.

How can neurodivergent artists market themselves?

 "How can neurodivergent artists market themselves"?

This was a question I was asked during a webinar entitled ‘Neurodivergent artists and practitioners discuss how they work with digital’ last week. The Space, the BBC’s digital agency, had invited me to speak because of my recent commission for ‘Spectrum Sounds’ which will be broadcast later in the year.

Autism does present real challenges in this respect and I found myself giving a fairly downbeat answer. Reflecting on my compositional life, I realised that many of my contemporaries have carved out pretty successful careers, winning frequent commissions, prizes, recording and publishing contracts, broadcasts, and generally being talked about and listened to. My compositional career has been less obviously successful by comparison.

Why might that be? One possibility is that my music is not as good as theirs, but I would counter that argument with the evidence of all the fantastic reviews and comments I get whenever something is performed or broadcast. The most common epithet used to describe my music is “beautiful”, which can’t be too bad, right? I mean no disrespect to my friends and fellow composers now in their 60s when I say that my music stands alongside theirs perfectly well.

No, I think the real problem has been my almost pathological inability to “network” and “self-promote”. Funnily enough, I wrote about the importance of this in my book ‘The Digital Musician’, but I realise that I am lousy at practising what I preach, at least in this department. I’ve never set much store by fame, nor have I ever expected to make any significant money from composing, but I have wanted to communicate and express myself through music. 

I remember when Island Symphony premiered in 1995, a senior figure in the musical world declared it was “brilliant” and “a very important composition”. Then he said: “now what you have to do is to convince everyone else of its importance”. At that point, I realised that I had no hope of doing so. I simply lack the social and networking skills for that kind of endeavour. Island Symphony has a small and enthusiastic fan club, but it remains largely unknown, I think.

This is a facet of autism, I’m afraid. The whole system of marketing and self-promotion depends on one’s ability to get out there and talk to the people that matter. To be a presence on the scene. To indulge in the kind of back-slapping and mutual praise that makes the wheels turn. Performers rely on composers having reputations that will advance their own careers. Composers rely on commissions from organisations that can invest in them and expect a worthwhile return. Record companies and publishing houses are completely driven by marketing, of course. And then there are competitions, which form the life-blood of contemporary music these days. Panels of respected judges select works from a pool. What guides their choices? Some notions of musical excellence, no doubt, but these are surely shaped in no small measure by the reputations that precede people. Even judged anonymously, one can sense a zeitgeist in contemporary music that shapes opinion. If you do not make your presence felt, then you are not part of that zeitgeist. How do you make your presence felt? Through social interaction.

What can autistic people do about this? It requires constant presence. You have to be seen and mingling, so that when opportunities arise people think of you. You have to be visible, both online and offline, on the arts scene. How can you do this if social interaction is a challenge? I honestly don’t know. Some people say: get an agent. But that involves having constant and ongoing social interactions with the agent. Not to mention finding one in the first place. No doubt if you can get the right agent it will be great. But what happens if you get the wrong one? 

I do have something positive to say, though. Times are changing. There seems to be a new willingness to listen or to try to understand or include neurodivergent people. The Arts Council has woken up to this, but I also think wider society is engaging too. When I was young, there were very few people who identified as autistic. Now there are at least 700,000 in the UK. Many of those are working in music and the arts. It is hard to ignore so many people. 

I won the commission for Spectrum Sounds by entering a competition. That is only the third time in my life that I have submitted an application to a call like that. I would not have done so, were it not for some kind people at the Attenborough Arts Centre who pushed me into it. Of course, I am pleased to have won the commission (although still rather anxious about those who applied and were not successful). It has brought me back to composing in ways which are very rewarding for me, following my hearing loss. 

But I wonder what would have happened if the BBC, for example, had taken more of an interest in my work all along. I received several BBC commissions back in the 1980/1990s, but then they fell away. Because of my inability to network, I have never attempted to engage in any of the contemporary music festivals that run annually. Nor have I tried to get involved with performers unless they specifically asked me for something, or I could pay them from some commission money. Once I have a commission, I do hire people and pay well, but the commissions are few and far between. I’ve never had any idea how to approach a publishing house or a record company.

What’s great now is to see some young autistic composers breaking through and supporting one another. I saw it at the Sound Festival in Aberdeen recently, and I am seeing it around the place more and more. I wish them all the best and look forward to seeing the fruits of this societal shift that is going on. The increase in diversity in contemporary music can only be a good thing, in my opinion, and is long overdue.

Some thoughts following the Interdisciplinary Autism Research Festival (IARF2021)

A couple of weeks ago I spent the best part of three days attending the first Interdisciplinary Autism Research Festival. This was a wonderful event, during which I experienced the rare thrill of encountering an entire community of creative people and academics whose brains are wired the same way as mine. 

It would be both invidious and impossible to try to summarise or critique all the presentations. I managed to attend roughly half (there were two parallel tracks) and found myself impressed by the quality throughout. Every presentation had something special to offer and to single anyone out would give the false impression that there were “highlights”. So, I will restrict myself to describing some general thoughts that have arisen since the event. I needed a week or two to process everything in order to arrive at these comments. Even so, they are very much in formation still, and will doubtless evolve further over time. I just wanted to set them out now before the memories fade.

I should say at this point that I am not an autism researcher. My fields are music and computing (and ‘pataphysics, but that’s a whole other discussion). But I am experienced in interdisciplinary research, having directed a large research institute that sat at the intersection of technology, social science and the arts/humanities, and founded interdisciplinary subject areas, most recently Creative Computing. 

The IARF was inspired by the artistically-driven FlowUnlocked project and was part of the Wellcome Trust-funded project ‘Remembering what really matters’: Nature, Culture and Autism”. The disciplines represented in the festival included (in no particular order): autism research, psychology, cognitive neuroscience, education, health, disability studies, gender studies, philosophy, politics, linguistics, literature and creative arts (e.g. dance, music, visual arts, performance, animation, photography, graphic design, theatre). There was also a healthy sprinkling of activism, consultancy, community engagement and probably several other important areas that I have missed. Such a superfluity of perspectives provided a very healthy intellectual ecosystem for the kind of discoveries of connections and differences that are essential to the emergence of new, hybrid disciplines. The fact that so many of the participants were united by a shared neurotype meant that one could observe the rapid formation of such an interdiscipline in real time.

There are three main types of cross-disciplinary collaboration: multidisciplinary, in which teams of researchers from different disciplines assemble to address a common problem; transdisciplinary, in which researchers exist beyond, across and above all disciplines; and interdisciplinary, in which the methodologies of one discipline are used by another. The IARF fell largely into the last camp, with a great deal of methodological cross-fertilisation between mainly quantitative disciplines such as neuroscience and mainly qualitative ones, such as the creative arts. Indeed, one recurring fault-line for the whole festival was an autistic take on the ancient debate between positivism and phenomenology. As  usual in such discussions, the consensus was in favour of a mixed-methods approach. But what was unusual was the extent of the consequences for the individuals concerned of an inflexible insistence on one or the other. This was really a theme: the courage and determination of individual researchers and/or artists fighting for an autistic vision within an intolerant culture which insists on a methodological approach that constantly reinforces an outdated and harmful set of stereotypes.

The sense of assertiveness and fellow-feeling that this generated was accompanied by some classic signs of the emerging form of a new interdiscipline. A key area for discussion was jargon, which is always a major concern of communities of scholars as they try to establish boundaries for their field. In this case, participants were actively discouraged from using certain words which evoked rejected forms of research. Other terminologies were debated at length. 

So, this is an exciting time for the community of interdisciplinary autistic researchers. The new field is in formation in front of our eyes, and is ours to shape and develop as we see fit. It has great potential, and it is wonderful to see practice-based artistic research being included and treated as equivalent to more traditionally 'academic' disciplines. Bruce Tuckman’s classic model for group formation is “forming - storming - norming - performing’. So far, I have seen nothing but forming. Perhaps this will be one group that resists that rather neurotypical sequence by skipping past the “storming” and “norming” steps and heading straight from “forming” to “performing”. Certainly, the level of direct communication between participants would suggest that this is very possible. 

Designing autistic spaces

One thing that my identification/diagnosis has revealed to me is my mostly unwitting role in designing autistic (or, more precisely, autism-friendly) spaces.

During my academic career, I have often been in the fortunate position of being asked to create spaces. On every occasion, I have been the Director of a Centre or an Institute, or the holder of a large capital grant that has given me the right to dictate how the space should be designed. To give some examples, I have built: two recording studios, a multidisciplinary research lab, a performing arts space, a usability lab, and an enormous institute full of digital technology and experimental equipment. Furthermore, I have frequently been asked to advise on the construction and design of spaces outside the university. Back in 2009, for example, I designed a digital gallery/workspace in a local arts centre, and I have recently been consulted on the design of a laboratory in a science park. 

Now, I should stress that I have no qualifications for building and designing spaces. However, I do have some quite strong opinions about how it should be done and since I was “in charge” in these situations, I took some key decisions. What I now realise is that every one of those decisions arose directly from my autism. Of course, I had no idea at the time what was going on!

In my life, I have always navigated the world by trying to find autism-friendly spaces. So, for example, on arriving in an airport, the first thing I would do is to seek out the multi-faith room. This is generally a quiet space with low-level lighting and low stimulus colours, often wood. It would have a transient population, so there was no real danger of unwanted social interaction (unlike churches, where there is always someone who wants to chat). As a child, at school, I created a “war gaming club”, which had only two members. The reason was that I could then take occupancy of a basement room that was otherwise unused. After a time, it became apparent to the other member that this was really about something other than “war gaming”, so he left. I had a silent room all to myself. There are many more such examples. 

When designing spaces in universities, or elsewhere, my main priority was to control the environment and especially the sound and lighting. All my spaces had the kind of sound-proofing that would be used in noisy industrial spaces. In other words, they were as close to silent as I could get, whether they were recording spaces or not. The colours would be simple - a white, or a pale blue - and uniform. This would extend to the ceiling and even the floor, but with differences in shade or texture making it clear where the boundaries were. This is important for me, because my proprioception requires location points to be able to function. Lighting would be LED and not fluorescent. As with many autistic people, I can see the flickering of fluorescent tubes and find it very disturbing. There would be no irregular patterns, no asymmetrical features, no irrelevant “features”. The spaces needed to be predictable and functionally elegant. They also had to be flexible and have technology built in, including silent air conditioning to remove any smells (again, my autism means that I have always found certain smells intolerable) and moderate the environment to a steady temperature. 

Now, when I look at the BBC’s Sensory Environment Checklist https://bbc.github.io/uxd-cognitive/ I see that these spaces of mine all conformed to those standards. I used them for my personal wellbeing, but what was interesting was how much neurotypical people also liked them. It is often that way: the environmental changes that suit autistic people also suit neurotypicals. Luke Beardon wrote: autism + environment = outcome. I now understand that I have somehow been aware of that formula all my life. 

Most recently, a local media/arts centre started talking to me about extending a space that I had designed back in 2009. This is a digital gallery. It is set off from the main area by a corridor, so many people do not go into it. I created a beautiful autism-friendly environment in complete contrast to the bright, buzzy café nearby. It has a floating floor, silent aircon, LED lights, and buff walls that can easily be repainted. Over the years it has hosted many superb exhibitions and installations and the directors of the centre obviously assumed that its purpose was solely digital art. Little did they, or I, realise that it is also a space for autistic people to retreat to when they arrive at the centre. Interestingly, they are now asking my advice once again about how to extend it. This time they are talking to me not because of my academic position or expertise in digital arts so much as my identity as an autistic man. I’ve been very frank with them about the purpose of the space, how it could attract a new autistic audience, what is required of the extension to make its dual purpose clear. We’ll see what actually emerges, but it is a sign of how far we have come that such things are now being openly discussed and in a most positive way.

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.

Equality, Diversity and Inclusion in Music Studies

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

1. Neurodiversity vs. Neurodivergent

 

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

 

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

 

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

 

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

 

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

 

3. "Disability"

 

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

 

4. Environment

 

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

 

5. Check out...

 

Two very different videos. 

 

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

Highly articulate and brilliantly presented.

 

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

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