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.

From Diagnosis to Dialogue: Reflections on Autism Advocacy

In the seven years since I was professionally identified (or "diagnosed") as autistic, I have gradually developed a role as an autism advocate and occasionally even a consultant. I've done this out of a sense of responsibility, feeling the need to use my relatively prominent position to speak up about autism, indeed to represent it by being myself as much as possible. 

At times, this has been a little bit uncomfortable because, as I always say, I cannot speak for all autistic people. At the same time, I feel I do have a pretty good understanding of autistic issues, including those affecting people with learning difficulties or non-speaking people. I know several such individuals personally and whenever I am with them I am struck by how well we understand one another, whereas I can often struggle to understand neurotypicals. This is the famous double empathy problem in action. 

So much of what I do has been a process of translation: between lived experience and institutional practice, between neurodivergent insight and neurotypical assumptions, between urgent need and bureaucratic tempo. What began as a necessity - responding to the marginalisation and misunderstanding of autistic people - has developed into a more strategic form of engagement, helping organisations, companies, projects, universities, funding bodies and more navigate questions they didn’t always realise they needed to ask.  

To make these translations requires understanding both myself and autism more generally, and being able to communicate those insights in a whole range of situations from formal meetings and consultancies through to casual encounters. This can be quite challenging and indeed tiring, but I measure success and satisfaction in terms of small victories. The most meaningful outcome is not structural change but a quiet moment of recognition, for example a person reconsidering a long-held assumption or an organisation rethinking its definitions of excellence. 

At the heart of my work lies a deceptively simple proposition: autistic people should be involved in decisions that affect autistic people. Yet in many academic and cultural settings, this principle is still treated as novel. 

My first steps were the monthly Propeller workshops at BOM (Birmingham Open Media). Fresh from diagnosis, I encountered a group of other autistic adults for the first time. It was a remarkable experience and really helped me to understand the commonalities between us. We came from very different backgrounds and had widely varying support needs, but found an immediate and very direct form of communication that was open, honest and very rewarding. Full marks to Chloe Lawson, who ran those workshops with care and insight.  

Since then I have: 

 - served on disability panels at the University of Leicester, where I also founded the Staff Neurodiversity Group;

 - worked with the NHS and the local council on the Leicester Autism Partnership board, where I have also helped to develop the Autism Space website;

 - advised venues and organisations such as Leicester Railway Station, Phoenix Cinema, Attenborough Arts Centre, and many more, on interior design and accessibility;

 - been part of disability consultancy groups such as All-In Leicester, the Phoenix Advisory Group and Life on the Level;

 - worked as a consultant with large organisations such as Arup, Atkins Global and even the House of Lords; contributed locally through advisory roles with MBD Ltd and Attenborough Arts centre and work with ArtReach on disability leadership in the Midlands;

 - in artistic contexts have worked with the Percy Grainger Society, The Space, the BBC and Unlimited on various autism-driven arts projects, podcasts and web developments;

 - worked with charities such as Mosaic, which aim to improve the lives of autistic people.  

More important than all of this, however, are the many personal interactions I have had with both autistic and non-autistic people, during which I have tried to discuss and translate autistic issues as best I can. All the while I remain conscious that my very presence is itself the most powerful representation. To simply be autistic in professional and public contexts is to represent something that is still all too often invisible. 

This work requires stamina, strategy and no small amount of patience. But it also brings a peculiar joy: the joy of working towards a world where autistic people are not just accommodated, but understood and valued. 

That world is not yet here. But in every consultation, conversation or contribution, we help bring it closer.

Interviews and Autism: some thoughts

During my academic career, I have chaired or sat on hundreds of interview panels. I went through the necessary HR training more than once and have read many guidance documents and briefing notes. Since being professionally identified (or “diagnosed”) as autistic in 2018, various issues that have always bothered me have come to the fore. I believe I have had some small impact on changing the interview process itself. However, and despite that, interviews remain a game designed by neurotypicals for neurotypicals. Given that they are a heightened and unnatural situation, those who understand how to role play and dissemble, how to engage in all those small social cues that provide mutual reassurance amongst groups of like-minded people, are the ones who normally succeed. The same would be true of an interview situation comprising mainly autistic people, but those are relatively rare. The structure and HR approach to interviews is most certainly designed by neurotypicals, although there have been attempts recently to be more inclusive. As always, those attempts are a bolt-on to standard practice: “if you are interviewing an autistic person then you should…”. It is often impossible to know that the person you are interviewing is autistic!

When I compare my experience as an interviewer with my experience as an interviewee, a marked difference emerges. I have had four major jobs in my career, and I have not been interviewed for any of them. In every single case, somebody has decided that I am the right person for that role and has invited me in. In other words, I have always been headhunted. I have only ever done two actual interviews. The first was for an academic lecturing post at a different university. The interview went as badly as might be expected, with all the usual autistic anxieties about the venue, the situation, and sensory issues, combining to lead me to overshare massively in answer to their first question. (I did meet the chair of the panel at a conference several years later and he was kind enough to express regret that they did not appoint me, which was very generous of him). 

The other interview was internal, when I was encouraged by the Vice-Chancellor to apply for a senior management position. The interview was conducted in a vast glass and metal building in central London by a slick team of HR consultants. I had no opportunity to familiarise myself with the building beforehand, no idea where I was going or who I was to meet, and no efforts were made to create a suitable sensory environment for me. My brain cannot be active if I am sensorially overwhelmed, as I was on this occasion. The interview was disastrous because they asked me what I thought of the Vice-Chancellor and I gave a full and honest reply which was pretty negative. Autistic people are always honest and direct in their answers to interview questions, regardless of the consequences for their own prospects. Looking back, though, I reckon I had a lucky escape!

Before becoming an academic at the age of 29, I survived in a haphazard way on a mixture of unemployment benefit (“the dole”, without which I would probably not be here today) and occasional casual work. I never held down casual work for long (it included things like collating traffic surveys, screwing the baseplates on mannequins, and working in a food warehouse) and I was never interviewed because I was placed in these positions by the dole office. Avoiding being interviewed was a key part of the reason for my lack of regular employment. I also did quite a lot of copying music parts for publishers and composers, something that again I could do without being interviewed and which I could do at home. At the time, I was unaware that it was the prospect of being interviewed that drove me away. Now, of course, I realise that that was a major reason, alongside the fear of having to mix with colleagues, working in unfamiliar environments, etc. 

Since my diagnosis in 2018, I have become much more aware of the issues facing autistic people who go for an interview. To give one example, I have repeatedly challenged HR (Human Resources) departmental advice to interviewers that they should assess a person’s body language and eye contact. This seems to be something all HR people are taught and fits with ridiculous clichés such as the idea that people are more honest if they look you in the eye. The whole idea of “body language” seems suspect to me. As far as I can tell, neurotypicals lie with their bodies all the time, and the notion that they share mutual understanding that way is just a comforting myth to make them feel reassured, a form of social bonding if you like. Needless to say, autistic people find all that utterly baffling and generally do not conform to normal expectations of how their bodies should behave.

Reinventing the interview process is a massive and probably unrealistic task. Organisations generally do not have sufficient time and resources to devote more to interviews. However, the downside is that many autistic people then either fail at interview or, more often, never get to the interview in the first place. There are numerous statistics around about the disproportionately low levels of employment in the autistic community. The National Autistic Society sets it at 30%.

What can be done? Ideally, I would like to do away with interviews altogether and replace them with a kind of probationary working model where people are given an opportunity to experience the real environment of the job for a week or two (during which time they would be paid, of course). One of the commonest mistakes autistic people make is to assume that they should try at all costs to get the job for which they are being interviewed. This is wrong because interviews should be a two-way process, in which both interviewers and interviewees figure out if this is the right ‘fit’ for them. Allowing a longer time to come to that judgment is the best solution, and would lead to far fewer bad appointments or, indeed, devastating rejections, being made.

Failing that, there are some practical steps that organisations can take to help autistic people who come for interviews. There are numerous good pieces of guidance online from, for example: the University of Bath, Autistica and the Buckland Review of Autism Employment. I’d distil these into the following key points:

1. Provide the candidate with videos of the interview venue in advance, or even a visit.
2. Give candidates the questions they will be asked in advance too.
3. Do not try to make candidates “think on their feet”. (That phrase is a typical example of metaphorical language to be avoided. Even as I write it, I become confused, even though I know exactly what it is trying to express). Even if the job involves having to respond quickly to situations, there is a great difference between doing so within a secure context and doing so in an interview.
4. Be sure to use clear language without metaphors and ambiguities. Speak literally.
5. Be very careful about the physical environment. Potential sensory issues include strong lights (strip lighting is the worst), unexpected sounds, strange smells, and so on. It is best to check with the candidate beforehand what bothers them. 
6. Avoid interruptions and stick closely to schedule. Include breaks if the process is long, and stick to them too.
7. Explain the process and make it clear that the interview is two-way.
8. Allow (even encourage) the candidate to stim during the interview. This has the advantage of being reassuring for them but also is an important signal that you understand their needs.
9. Provide a quiet room where candidates can decompress in private. Don’t make the candidates engage in social interaction with one another.
10. Be aware that autistic people may seek to comply with whatever it is you seem to be wanting.

For autistic candidates, the traditional interview process is often deeply flawed. The importance given to social cues and quick thinking under pressure works against autistic people. A more inclusive and effective approach would be to shift toward practical, real-world assessments that allow candidates to demonstrate their abilities in a supportive environment. To be realistic, though, the bets we can hope for is small but meaningful adjustments, such as: clearer communication, sensory accommodations, and a genuine commitment to neurodiversity. Where such changes happen, there are small victories which will eventually combine to change the culture as a whole. 

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. 

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!

Equality, Diversity and the REF

The REF2021 results have just been published. The REF (Research Excellence Framework) is an assessment exercise that rates the quality of research across the whole of higher education in the UK, institution by institution, discipline by discipline, and even person by person (although that personal information is hidden in the published results and has to be decoded). There is a lot riding on this exercise. The better your research is deemed to be, the more funding your university receives and the higher up the academic league tables you go. The results are given here https://results2021.ref.ac.uk 

Apart from the academic review panels, there is also an Equality and Diversity Advisory panel, whose remit may be viewed here https://ref.ac.uk/equality-and-diversity/ They focus mostly on: “the environment for supporting research and enabling impact within each submitting unit”. (Environment accounts for 15% of the overall outcome awarded to each submission and is assessed against two criteria: vitality and sustainability). Their report makes interesting reading. As James Coe points out, the following passage gives pause for thought (my italics):

“Although the EDAP’s review of institutional and unit environment statements revealed much good, and some excellent, practice across the sector, it also showed that this was far from widespread. Although many institutions had successfully implemented several gender-related initiatives, there was much less attention given to other protected groups. The panel therefore had little confidence that the majority of institutional research environments would be sufficiently mature in terms of support for ED within the next few years to totally dispense with a circumstances process”.

This reflects my own experience of ED in Higher Education. Despite the best efforts of disability groups and individuals (such as myself) in universities, disability remains the poor cousin of gender and ethnic diversity. “Equality” is normally code for gender equality, and “diversity” is normally code for ethnic or racial diversity. The various other protected characteristics (disability, religious beliefs, age, marital status and maternity) tend to get added as an afterthought at best. 

So it is really alarming to see only gender being seriously considered as part of the research environment at most institutions. Given that disability is defined (horribly!) under the Equality Act of 2010 as “a physical or mental impairment that has a substantial and long-term negative effect on your ability to do normal daily activities” and given that there are 14.6 million disabled people in the UK (according to the charity Scope) it seems quite absurd that such little account should be taken of its consequences for academic researchers. 

To be more specific, I have an admittedly unscientific suspicion that the actual numbers of autistic academics greatly exceeds the reported numbers. I am certainly aware of many colleagues who I imagine are autistic but who have not been professionally or personally identified as such. Given the extent to which autism can affect one’s interactions with the environment, it seems likely that this is a significant factor in the performance of such researchers, whether for good or ill. An exercise such as the REF really needs to take account of this. After all, we try to do the same for our students, so why not for the staff?

Navigating awkward situations

Christmas is coming, that time of year when social interaction is not just encouraged but required. From an autistic point of view, it is challenging, as I have mentioned before.

I’ve been reflecting recently on the strategies I use to navigate awkward situations. These situations mainly occur at work. In general, I can manage them because there are rules of engagement for academics, such as disagreeing without it becoming personal (“disputation”, as it was once called). However, those rules do get broken and sometimes situations become highly charged and even personal too. 

I have three approaches to any interaction: silence, scripting, or casual. 

Silence occurs when I find myself confronted by complete unpredictability (for example being approached by a stranger, or too many people all at once). In such situations, I can get quickly overwhelmed. It is mostly involuntary. I don't choose to be silent - silence chooses me.

Scripting involves anticipating every likely path a meeting might take and being ready with a response. It’s like branching literature, or computer code. I find myself “reading” the dialogue in my mind as if it were written on the pages of a book, complete with “he said/she said”s. I was talking to a colleague the other day, who commented that I seemed to have anticipated every possible way in which the conversation could go. This was scripting in action. 

Casual interaction can only happen if it follows the pattern of something I have experienced before. Since I am now of fairly advanced years, many situations fall into this category. Even so, things can quickly shake me out of casual mode. Sometimes just the question “how are you?” leaves me floored, especially if I don’t know the person I am speaking to. I never really know how I am. I also know that people who ask that question do not really want to know how I am. It’s a minefield!

Whichever mode I adopt, there is always a possibility that a situation could take an unexpected turn. This can be very difficult to deal with. To try to manage these more awkward situations I have spent a lot of time over the years studying strategies. I read books of theory so that I can at least give the appearance of understanding what is going on. I can’t pretend that this approach is always successful, but I do try hard. Let me give two examples.

Back in the 1980s, Gavin Kennedy wrote a terrific book called Everything Is Negotiable, subtitled “how to negotiate and win”. I have not used it much for getting deals, as it intends, but I have deployed some of its principles in other situations. For example, there is a technique called “the Lazarus shuffle” in which you refer to someone who is not present in order to apply leverage. I have used that many times and it is often successful. The advantage of an absent authoritative figure is that they cannot easily be challenged. At the very least, you can achieve a delayed resolution with this technique.

Another idea I have studied and used many times is Bruce Tuckman’s theory of group formation, which basically goes: forming, storming, norming, performing. I am currently experiencing this scenario in an academic setting and, once again, it is proving to be incredibly accurate. It really helps my autism to be able to analyse the situation when we reach the “storming” phase. That way, I can avoid getting too distressed by the fraught social interactions taking place. It fulfils a similar function to being able to see photographs of a place before I visit, rendering it more predictably familiar and so reducing anxiety.

Now, of course, anybody could use these kinds of theories.There’s nothing particularly special about the fact that I do this. However, I think it is the rigour and consistency with which I apply them that is the autistic part. It is my attention to detail and awareness of how interactions conform to these patterns that sets me apart. I see similarities with chess: being able to anticipate moves and combinations of moves and being able to respond accordingly. Without some kind of “manual” of neurotypical behaviour like this, I would be completely lost.

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. 

"Positive psychoeducation" and ableism in academia

There has been quite a lot of discussion in academia recently about using “positive psychoeducation” to address the mental health crisis in students. The most headline-grabbing example of this is a module, offered at the University of Bristol, entitled ‘The Science of Happiness’. Here’s a video about it.

This clearly has a basis in solid psychological research and is delivered in a novel way which has demonstrably benefitted many of the students who have taken part. The science of happiness is also an intrinsically interesting topic that is relevant to a wide range of disciplines so, on the face of it, this would seem to be a welcome contribution. Surely, anything which improves student wellbeing has to be a good idea, right?

When this first came to my attention, alarm bells instantly rang. What would an autistic experience of this module be like? As I investigated further, I realised that my instincts were correct. This doesn’t just present autistic people with some challenges: it is actively ableist in a way which I am sure the authors do not intend. Let me explain.

The research which underpins the course is described in Hood, B, Jelbert, S., and Santos, L. R., ‘Benefits of a psychoeducational happiness course on university student mental well-being both before and during a COVID-19 lockdown’, Health Psychology Open January-June 2021: 1–12. This sets out both the evidence for benefits, which are significant, and the contents of the module itself. No mention is made of diversity in the paper and when it refers to a “university student”, it obviously means any university student. In other words, this is a ‘one-size-fits-all’ solution. We learn that:

“[…] in order to earn course credit, students had to participate in weekly ‘happiness hubs’ (maximum of 11 meetings total) which were led by a postgraduate student or senior psychology student mentor. During these ‘happiness hub’ meetings, students were encouraged to discuss the course content and to take part in a series of positive psychology interventions (PPIs). […] These interventions involved (1) performing acts of kindness (2) forming social connections (3) savouring an experience, (4) increased exercise, (5) trying to achieve several nights of at least 7 hours sleep, (6) meditation and (7) writing a gratitude letter. […]”.

I’m going to criticise this from an autistic perspective, but I think what I have to say also applies to other disabilities. As a person with Ménière’s, I can see several obstacles to achieving ‘happiness’ in this list. But let’s focus on autism.

Both “(1) performing acts of kindness” and “(2) forming social connections” immediately present a serious problem. The standard diagnostic criteria for autism refer to “deficits in social communication”. I dislike “deficit” language, so I would phrase that differently, but the point remains that social interaction is one of the most challenging areas for autistic people. I cannot imagine approaching a stranger to perform an act of “kindness” (what might that be?) or randomly strike up a conversation. That would take a lot of spoons and most likely be unsatisfactory or even dangerous.

“(3) Savouring an experience” and “(6) meditation” involve opening oneself up to sensory overload. In some circumstances, this may be possible or even desirable, but it would need very careful management. If done wrong, the damage could be considerable. Speaking personally, I find ‘mindfulness’ close to torture. I spend a lot of time and effort trying to avoid mindfulness!

“(5) Trying to achieve several nights of at least 7 hours sleep”. There has been a lot of research into the problems that autistic people have with sleep. The National Autistic Society has published some guidance about this. Obviously, it would be beneficial if everybody could get a good night’s sleep, but we should be realistic about what is possible. Making this a required component of an academic course is more likely to disrupt autistic sleep than encourage it.

“(4) increased exercise” seems relatively uncontroversial, inasmuch as increased exercise is likely to bring health benefits to any human being. Even so, this may not be straightforward. The point is that the many benefits of exercise for autistic people are not exactly the same as those for neurotypical people. This is another aspect of the module that would require careful monitoring, especially if it involves changing routines.

“(7) writing a gratitude letter”. Well, this may be beneficial to both writer and recipient, but I know that I would find it difficult to write such a letter unless I had a clear reason to be grateful. I would need to understand the social conventions of such a letter. My belief is that you write a gratitude letter when somebody sends you a gift. Beyond that, there seems to be no social convention for writing one, unless you feel a sudden surge of gratitude for some reason. This is unclear and could become quite a stumbling-block.

Overall then, it is the normalising conception of what the students are required to do that is ableist. The proposition is that an autistic person should do what they find most difficult, even impossible, in order to achieve happiness, just because neurotypical people find these things pleasant and easy. The requirement to achieve normalised happiness is likely to have severely negative repercussions. If autistic people are given an opt-out, then that is problematic too, because it will look like they are unable to achieve happiness at all.

What could be done instead? How about a module that is based on autistic joy? One that actively encourages specific interests. That allows for repetition and embraces stimming. That accepts social isolation and non-standard communication. That removes barriers such as the need to use body language. That develops sensory spaces that autistic people find pleasant. That addresses anxiety by observing and analysing its causes. That reduces demand and translates autistic neurology so that neurotypicals may understand. That accepts autism as a reality rather than problematising it.

Universities are full of autistic staff and students. It is high time that this group be  properly included when developing new approaches to wellbeing.