Monday, 20 December 2021

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.


Tuesday, 26 October 2021

Some more thoughts about music

Last year I wrote a post about music in which I described how my listening has been affected by my autism. I recently composed a new set of seven pieces in response to a commission from the BBC, called 'Spectrum Sounds'. These were my first compositions about my autism, rather than just a product of it. Now that the pieces have been broadcast on Radio 3 and published on the BBCR&D's innovative 'Audio Orchestrator' platform, I have had an opportunity to reflect on what I have learned as an autistic composer. There are three main takeaways: the persistence of synaesthesia; the differences between collaborating with autistic musicians and non-autistic musicians; and a question: who is this music for?

Before discussing these, I should note that the "spectrum" in the title is the colour spectrum rather than the autistic spectrum, although there are obvious echoes of the latter. The pieces were also very much about my hearing loss (thanks to Ménière's), but I will not focus on that aspect in this blog post. However, it is worth noting that each piece is only a few minutes long because I find it difficult to listen for longer than that. Each piece is associated with a colour from the spectrum and features a different musician.

The persistence of synaesthesia

During the composition of the yellow piece, I had a sudden moment of memory that I had done this before. I went rummaging in a cupboard and found an old score that I had written in my teens, entitled 'A World in Yellow'. This was for the unlikely combination of four harmoniums and voice, which more or less guaranteed it would never be performed. When I looked at the score, I found my head flooded with yellow once again, just as vividly as it must have done all those decades ago.

This showed me an interesting facet of synaesthesia (which is a confusion of the senses): its persistence. In my case, certain associations between certain colours and certain sounds formed in my youth and have never left me. An open E string on the violin is strongly red, for example, and a high F sharp on a trumpet is blue. As you can tell, I did try to grapple with this during my formative years, but eventually gave up trying because it was so unscientific, arbitrary and apparently pointless to do so. 

I'm not the only composer to have been synaesthetic. Amy Beach, Alexander Scriabin, and Olivier Messiaen are all famous examples and there have been many more. Those people were often quite systematic about their synaesthesia, whereas mine has always been a bit rough and ready by comparison. But it is no less intense for that. It also affects taste and smell to some extent. I can remember avoiding the Bakerloo line when I lived in London because the brown colour on the tube map gave me sensation that combined with the smell of bakelite (the word was obviously the source of this association) and a disgusting taste that made the whole idea of stepping on to that line revolting. Now, I could have overcome this if I really wanted to, but it was easier just to avoid the whole thing.

During my musical career, I have listened past the synaesthesia in a similar way, trying to ignore the colour sensations I was getting when listening. It has been refreshing to revisit this aspect of myself and give it renewed consideration. 

Autistic vs. non-autistic musicians

All six of the musicians I worked with were wonderful (the green piece was played by myself - green has always been my favourite colour). On a musical level, they were equally rewarding to work with. Three are autistic, and two have severe to profound hearing loss, while one is not autistic and has "normal" hearing. Some musicians needed a musical score to play, while at the other extreme one did not read music at all and worked from written verbal instructions. In some cases there was more of a compositional aspect to the collaboration than others, for example, two of the musicians worked on producing their own sounds in response to my instructions, which I then reworked to make the finished piece.

The things I noticed about the autistic musicians as opposed to the neurotypical musicians were the very rapid understanding and the mostly non-verbal nature of the communication. We would talk very little, and yet these musicians would quickly produce something that matched my intentions. I find this fascinating and observe that it mirrors my experience of everyday interactions. In general, I seem to get an instant communication with other autistic people, whereas with neurotypicals it can be difficult, even impossible, to achieve a rapport.

I was in a meeting recently during which the mother of a non-verbal autistic son told me that my brain works exactly the same as his. This confirmed something I have long suspected, that the autistic "wiring" exists independently of standard communication methods and carries a deep level of mutual understanding.

Who is this music for?

This is a hardy perennial question for composers, and can lead to some creatively inhibiting internal arguments if you dwell on it too much. But in this case, it really did get me thinking. Several years ago, I submitted some of my compositions that dealt with my hearing issues to a journal which publishes artworks as well as academic papers. They rejected it, and in explaining the reasons the editor wrote to me as follows:

>>I would suggest to look at [the reviewers'] opinions not as resulting from some form of deficit but from a genuine position where they couldn’t see or hear what you are seeing or hearing - what’s clear to you isn’t translating well enough, and this is where some of the necessary work of articulation might lie.<<

This really sums up the problem. If you write for and about yourself, there is of course no guarantee that people will understand what emerges. I assign each piece a colour of the spectrum, but of course the vast majority of listeners will not experience those colours, and even those who are synaesthetes will not necessarily have the same associations as me. 

This is really the autistic condition. We are permanently in the situation of seeing or hearing things which others do not, and finding it challenging to communicate those perceptions. Furthermore, this cuts both ways: the rest of the world does not communicate itself well to us either! This editor made the rather ableist assertion that the problem lies with me. I can resist that as much as I like, but when it comes to writing music which I hope others will enjoy, then it remains a problem. The 'Spectrum Sounds' pieces are as authentically me as it is possible to get, something that is not true of all my compositions. As such, the pieces still stand and I hope will find an audience anyway.

Sunday, 5 September 2021

My thoughts on Spectrum 10k.

It’s been a busy few weeks, what with the first Aural Diversity workshop and the broadcast of my ‘Spectrum Sounds’ pieces by the BBC (you can hear three of them at https://www.bbc.co.uk/sounds/play/m000zch2 starting at 42' 06"). I’ve been aware of the Spectrum10K controversy, of course, but decided to pay it no attention until these significant events were in the past. So I have only now had a chance to sit down and take a proper look at the proposition. 

Spoiler alert! I won’t be taking part. 

I should state from the outset that I am strongly in favour of science (I am an academic at a university after all) and I am by no means against genetic research. In fact, I can really see the potential for genetics to treat Meniere’s, for example. I don't believe in conspiracy theories and I am not easily swayed by majority opinions. I’m quite happy to be anomalous if necessary. Having said that, I am not naive about science either. Just because something is scientific doesn’t necessarily make it good. Let’s not forget that it was “The Lancet”, no less, that published that awful paper linking autism with vaccines (I wont put the name of the scientist in print). Some of the most wrong-headed, poor quality and destructive ideas have been promulgated under the guise of scientific research. That doesn’t make science a bad thing. It just means we have to improve our quality mechanisms. 

I am also very familiar with evaluating scientific proposals, having considered hundreds, even thousands, as part of my work for the EU and other scientific committees. I am not an autism researcher and I know little about genetics, but I still consider myself able to make a reasonably objective evaluation of the merits of any project. However, in this case I am at a disadvantage. Normally I would have access to the full proposal, giving the aims and objectives, methodology, state of the art, full backgrounds of all the investigators, etc. Since I have no sight of these, my evaluation of Spectrum 10K is based purely on the same public information and PR campaign that has been given to everyone else. 

Spectrum 10k wants me to send them my DNA by spitting into a test-tube and to give them access to my medical records. The reasons are fairly clear on one level: they want to create an enormous database on which future genetics research may be based. On another level, the reasons are pretty unclear. For example, in relation to the access to medical records they state: “One of the aims of Spectrum 10k is to identify factors that contribute to co-occurring physical and mental health conditions in autistic individuals”, which seems quite vague. I may only speculate that there will be a correlative study made between the co-occurring conditions and the genetic markers, but there is insufficient description of the methodology to be sure of this. 

The central problem with Spectrum 10k is one of trust. They state unequivocally that they are against eugenics. Of course they are. But there is a well-founded fear that, once the database has been assembled, it could be put to uses other than those intended at the outset. Why is this fear “well-founded”? It’s partly a matter of historical fact. One only has to read Steve Silberman’s ‘Neurotribes’ to understand the history of abuse and medically-justified torture (even murder) to which autistic people have been subjected, and indeed still are being subjected in some places. 

To try to understand the Spectrum 10k proposition better, I watched this video of a lecture about ASD genetics by one of the Co-Investigators, Dr Dan Geschwind of the UCLA Centre for Autism Research and Treatment. He explains that the aims of precision medicine are to create a personalised treatment for every individual. As he states: "Everybody will have their genome done at some point in the future". The lecture starts out talking about cancer, enthusing about the successes and potential of genetic research to target cancers in individuals. It then moves on to autism. The message is perfectly clear: autism, just like cancer, may be eradicated if the c.500 genetic markers can be accurately identified and modified. He states: "if we know the mechanism of mutation, then we can prevent it" (10’ 26”). He uses the phrase "cure the autism" (10’ 58”) and refers repeatedly to the “risk of autism”. He says “it would be great if we had something analogous to the killing of dividing cells [in cancer] for autism” (19’ 51”). If you treat autism as a disease, then of course you will seek to prevent it or cure it. But I am not diseased by autism and I don’t believe other autistic people are either. We are just a different neurotype and one that has a right to exist. What we need is social acceptance and a better environment to live in. 

There is another aspect of Spectrum 10K that I find highly problematic. The website states: “Spectrum 10K aims to investigate genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families”. Well now, the “environmental factors” are of far greater interest to me (and, I suspect, the vast majority of autistic people) than genetics. So, I eagerly combed the website looking for an indication of how the environmental factors would be investigated. What are the research questions? What is the methodology? What are the anticipated outcomes? Any hypotheses? Any initial frame of reference? Any planned surveys, or experiments, or even consultations? I searched in vain. There is almost no discussion of this all-important area, as far as I can see. This absence of context is further emphasized by the membership of the research team, who are all geneticists, and the advisory panel which, we are told, exists, but whose members are unnamed. This does not inspire confidence.

And that is the fundamental problem. To be able to engage 10,000 people in an enormous research project like this, there has to be a sense of community involvement. People need to be carried along, to be convinced, to be able to see the benefits for themselves and others they care about, to be able to explain the rationale for the research. They cannot be expected simply to take things on trust because a lot of important people say that it has to be this way. 

The project seems to be on the back foot now. The National Autistic Society has revealed that they declined to take part and there have been petitions and letters and a social media campaign against it. A new statement was published yesterday acknowledging the problems and protesting good intentions. This appears to redirect Spectrum 10k somewhat towards the co-occurring conditions more than autism itself. This is certainly a more positive message. It could greatly improve lives if, for example, commonly occurring physical problems that disproportionately affect autistic people could be more effectively treated. But that still seems to be an afterthought and not the main aim of Spectrum 10k. While I am always open to being convinced to change my opinions by sustained and reasoned arguments supported by evidence, at time of writing I’m afraid my objections remain.

Sunday, 11 July 2021

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.

Sunday, 27 June 2021

Mind v. Body: Autism v. Ménière's

Back in 2009, I was diagnosed with Ménière’s Disease. I’d been experiencing the classic symptoms for a couple of years before that: powerful rotational vertigo; tinnitus; hearing loss; aural fullness. Ménière’s is notoriously difficult to diagnose accurately, but eventually it became clear that my symptoms were very typical and an expert ENT consultant was able to make the diagnosis and then prescribe treatments. I ended up having gentamicin injections, a kind of chemical labyrinthectomy, which were pretty effective at stopping the vertigo. My hearing loss is severe, and the tinnitus remains, and I still have balance problems. Needless to say, any Ménière’s patient also suffers from anxiety, usually brought on by the unpredictability of the condition.

The thing about Ménière’s is that it is a measurable set of physical symptoms. Standard audiometric tests can produce diagrammatic representations of the hearing loss. Balance tests and observations of nystagmus (rapid eye movements) can establish beyond doubt the presence of a vestibular disorder. Even tinnitus can be measured to some extent, based on clinical interviews. This is a set of symptoms that clearly exist in the body, originating in the inner ear but then with consequences for the whole vestibular and hearing system. 

However, many of the symptoms of Ménière’s, and indeed vestibular migraine, also overlap with autistic characteristics. Sensory issues, such as sensitivity to sound or bright lights or certain kinds of patterns, are typical of both. Anxiety is common in both. And a vertigo attack greatly resembles a meltdown/shutdown. The way of dealing with these is pretty much the same in both cases: leave the person alone in a low-stimulus environment with some pre-agreed objects and an opportunity to sleep it off. What happens afterwards is also similar: brain fog, shame or embarrassment, sometimes self-destructive thoughts.

It has been surprising to me how many autistic people I know also have a Ménière’s diagnosis. There are famous examples too, of whom Chris Packham is the most notable. I have found myself wondering a lot over the past couple of years to what extent these are connected. An ENT consultant I know speculates that migraineurs (people who have migraines) are an advanced form of human being whose extra sensitivities were a decisive advantage during the evolutionary phase of homo sapiens, but are now a disadvantage in the modern world. This sounds a lot like theories of autism as an advanced form of brain evolution. They may or may not be true, but the theoretical parallels are remarkable.


The question in my mind is: where is the boundary between my Ménière’s and my autism? This seems to be a body versus mind question, because Ménière’s is physical with consequences for the mind, whereas autism is neurological with consequences for the body. An autism diagnosis is easy to doubt, as we all know, because the symptomatic outcomes do not obviously point to an underlying physical reality (this is presumably what genetics research is trying to investigate). Yet it is quite clear to me that certain aspects of myself, especially those that have been in evidence since early childhood, cannot be explained by anything other than autism. But there is a grey area of overlap in which it is less clear what might be autism and what might be Ménière’s.


Let’s consider a concrete example. Several years ago, my wife and I went on holiday to the Arctic Circle, flying into Tromsø one dark, cold night to board a ship sailing down the Norwegian coast. This involved going through an airport, one of the most challenging environments for me as an autistic person. This was a few years before my autism diagnosis though. My wife supported me throughout, knowing the difficulties I usually have in airports.


While we were waiting at the boarding gate, I had an attack. I started sweating, the vertigo came on, and I staggered to the toilet expecting to vomit. Nothing happened though, and after a time my wife called me to say that the plane was leaving and we needed to decide whether to board it or not. I still felt terrible, but I decided to press on and staggered down the boarding channel to my seat, where I took out the sick bag and sat throughout the flight with my head in my hands. After an hour, though, I felt much better and we arrived in Tromsø just fine. I had some lingering brain fog but was otherwise able to function well enough.


Looking back on this incident (and I’ve had so many like that over the years) I question what was really going on? Perhaps my lunch had been too salty, but I doubt it. Was this in fact nothing to do with Ménière’s, but rather a shutdown or a panic attack brought on by my autistic response to the airport environment? That is certainly the way I would understand it now. The “vertigo” was qualitatively different to attacks I had had years before. The spinning was not so pronounced and was more a general sense of loss of proprioception. My hearing did not change either, which used to happen during a Ménière’s attack. No, this seems more like the kind of shutdown I used to experience long before the Ménière’s diagnosis. On this occasion, I could only understand it in terms of Ménière’s, but now I think that autism was probably a more likely cause.


Or was it, in fact, a combination of the two? Was autism creating the shutdown, but the body’s response was that of a migraineur or a Ménière’s sufferer? Or was it an overload of anxiety, coming from my response to the airport but connecting with autism somehow by building on anxieties around travel, change and the unknown? My wife was with me, which was great for my support, but I also felt responsible for her too. I wanted to make sure she was happy and having a good time. Perhaps the extra responsibility contributed to the psychological pressure?


So, how best to investigate whether there is any overlap between Ménière’s and autism? What is needed here is some transdisciplinary research. To achieve a more holistic understanding of the possible overlaps and relationships between these conditions requires researchers who are capable of overcoming disciplinary limits. I myself do not have the necessary expertise in either field, but I am sure there are people who could explore this further. The conclusion may be that there is no connection beyond symptomatic similarities. But even the process of investigation could have value in challenging the mind/body distinction that pervades medical and psychological research.


Wednesday, 2 June 2021

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. 


Saturday, 8 May 2021

"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.


Wednesday, 5 May 2021

Emerging from lockdown

A year in lockdown has affected everyone in ways which will only become fully apparent over time. There are the immediately obvious issues of mental and physical health, loneliness and grief, which are a sharp reality for many. But beyond those is a profound change in every aspect of human society and culture. Returning to ‘normal’ is not only undesirable, it is actually impossible.

From my autistic perspective, one of the biggest changes has to do with ‘masking’, that is: performing or presenting as neurotypical in order to fit into society. I learned to do this as a child and have been doing it ever since, to the point that it is impossible for me to remove ‘the mask’ because I do not understand where it begins and ends. Most of the time, I pass as assured and socially capable. People never see the mask, which is a sign of just how well I have learned to wear it.


Since being professionally identified in 2018, a few close friends/family have commented that I seem to be acting more autistic. This is a complicated thing to unpick, not least because I don’t feel my behaviour has changed much, if at all. It may be that their awareness of the diagnosis makes them see things in me that they did not notice before, or it may be that having acknowledged my autism I am now trying less hard to appear non-autistic, or it may actually be that I am indeed ‘acting more autistic’ or performing my autism in the same way that I used to perform neurotypicality. Probably it’s a combination of all three. 


But this is where the lockdown has had an effect. A year of interacting face to face with very few people is making me forget how to do it. I am losing confidence in my ability to behave appropriately. I have a strong suspicion that, when I do start returning to the neurotypical world, people will notice a difference, not because I am ‘acting more autistic’ but because I am not acting so non-autistic. Eye contact, for example, was something that I did with relative ease before lockdown. Now I am finding it harder to do again, in a way which harks back to childhood. Similarly, my ability to read facial expressions has been  compromised both by online interaction and by the wearing of physical masks. When I observe body language on TV or in the street, I am once again starting to struggle with deciphering what it means.


There have been occasions recently where I have been very aware of echoing back to people the way they are talking to me. It’s something I have always done. In the past, once I have felt confident enough with the person, I can move out of that mode and even redirect the interaction somewhat. But now I have forgotten that skill and will probably come across in ways that are not ideal, just because I am reflecting back the mannerisms of my interlocutor.


It’s not that lockdown is making me more autistic. Autism is a steady-state kind of thing. It’s just that masking requires constant practice and I have always had plenty of opportunities for that over the years. The university recently sent me a request to come to campus when lockdown ends, in order to show prospective students and their parents around our splendid new computer labs. I have to admit I find that prospect very daunting. I am getting anxious about my ability to cope in that kind of social situation. I think I need some less ‘mission-critical’ practice before I start re-engaging with the world in that way.


In ten days from now my second vaccination (which happened last Saturday) will have given me full protection. Covid is at a low level locally, so there is really nothing to stop me re-emerging into the world. But I am unsure about it. I think some limited forays will be a first step. Perhaps a visit to the office for an hour, maybe with a coffee thrown in, to get familiar again with that environment. Some low-anxiety social interactions with trusted colleagues too. 


During lockdown I have barely been out of the house. I have only visited the chemist once a month to collect my prescription and, on fewer than five occasions, I have gone to the Co-op to buy one or two items. I have always had a shopping list and have entered and exited as quickly as possible. Although the pubs have reopened, at least outside, I have avoided going back there, even though I do enjoy a pint. I have even become reluctant to consider moving house, something that actually would be a good thing because the present place is inadequate in many respects. I think I want to protect myself from the world. I know this has to change, but the anxieties of doing so are considerable.





Thursday, 22 April 2021

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.


Monday, 12 April 2021

Looking back on lockdown


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


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


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


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


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


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


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


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


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


Thursday, 18 March 2021

Access Rider

 I have recently been asked to complete an Access Rider. This is an easy way to communicate your needs to colleagues, employers or organisations, especially in the arts. It was a very interesting exercise. I thought I would share mine with the wider community, in case people are preparing their own and are looking for examples. There are many other examples, along with a template and instructions here https://weareunlimited.org.uk/creating-your-own-access-rider/

Name

 

Andrew Hugill

 

Intro Paragraph

I am a composer, musicologist, and author. I'm a Professor at the University of Leicester, where I lead the Creative Computing programme. I frequently speak at international conferences and give public lectures.

 

I have three invisible disabilities which affect my work and life: 

1. autism (includes social and sensory issues, but no learning difficulties);

2. severe hearing loss (includes tinnitus and diplacusis);

3. balance disorder (Ménière's Disease).

 

I often find a typical concert or conference situation overwhelming. Foyers and registration areas, communal break-out spaces, anywhere with strip lighting, unclear signage, background music, unstructured social interactions, reflective surfaces, lots of information, and general hustle and bustle, can cause me to shut down or have a vertigo attack.

 

My Access Needs

I have divided my access needs into Essential and Desirable. Essential needs are those that are completely necessary for me to do anything at all. Desirable are those which I can manage without but which could have negative consequences for my spoons. See the supporting information for an explanation of spoon theory.

 

Essential

a.   I do not drive, but will travel on public transport.

b.   My dietary requirements are: gluten-free, low salt, no caffeine.

c.    I require disability support in airports.

d.   I cannot balance in the dark, so some kind of low-level lighting is always necessary.

e.   I need a dimly lit quiet space to retreat to at any venue (doesn't need to be anything special).

f.     I need occasional short breaks to avoid loss of spoons, and I cannot listen to music for long.

g.   Speakers at conferences and events must use microphones, or live captioning.

h.   I must avoid fluorescent lighting, irregular patterns on walls and floors, and spaces with too much information/bustle.

i.      I must avoid floral perfumes, air fresheners, and other artificial smells.

j.     I need captions on videos and in live conferencing.

k.    I follow routines, so need to be able to take lunch at 13.00, for example.

 

Desirable

a.   I prefer natural light and spaces with clear edges/corners.

b.   Please avoid shining lights directly into my eyes, especially when I'm speaking from a podium.

c.    I prefer to see in advance pictures or videos of the places I am going, to reduce anxiety.

d.   I prefer low-arousal room colours (see autism-friendly environments below).

e.   I like to have advance warning of any fire alarms or other unpredictable and loud events.

f.     I prefer there to be no applause (but I can quickly put on noise-cancelling headphones to mitigate this if necessary).

g.   I lip-read, so prefer to be able to see people's faces when videoconferencing.

h.   Free-flowing "networking" events are very difficult for me. I prefer one-to-one or private contact.

 

In general, the social model of disability applies to me very well. The environment disables me more often than my conditions. For that reason, my access needs focus a lot on environmental factors.

 

Emergency Information

In any emergency, please contact [redacted].

In the case of a vertigo attack, please do NOT call an ambulance. Provide a quiet, dimly lit place, with water and a receptacle for vomit, then leave me alone. 

In the case of a shutdown, please communicate simply and clearly. Again, find a quiet, dimly lit place and leave me to recover. 


Supporting Information

 

An article on Spoon Theory: 

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

An explanation of the social model of disability:

https://weareunlimited.org.uk/the-social-model-of-disability/

 

A description of how to create an autism-friendly environment

https://livingautism.com/create-autism-friendly-environment/