Why I like tardigrades.

 Several months ago I was seated in a cafe-bar in the town square enjoying a drink and wearing this t-shirt (or something very similar):

I was approached by a young man who wanted to talk to me. Normally this would be a terrifying prospect, but this person wanted to talk tardigrades. It turned out that he was also autistic! We have since stayed in touch and are working together as part of an autistic adults group.

It was no surprise to me that another autistic person likes tardigrades. In fact there are many of us who are fans of the so-called water bears. But why?

Tardigrades are extremophiles, that is to say: a creature that can live, or even thrive, in an extreme environment. You can expose them extreme temperatures (e.g. they live for 30 years at -30 degrees), expose them to lethal levels of radiation, crash into them at high impact, and subject them to ridiculously high (or low) pressure: it matters not to the tardigrades. They can survive anywhere, from frozen mountain-tops to ocean depths. You can starve them, dehydrate them and even send them into outer space, they will still survive. In September 2007, a collection of dehydrated tardigrades were taken into low Earth orbit on the FOTON-M3 mission. For 10 days, they were exposed to the hard vacuum of outer space. Back on Earth, more than 68% of the tardigrades were reanimated within 30 minutes following rehydration. 

It's not hard to see why autistic people identify with tardigrades. The idea of being forced to survive extreme environmental conditions finds a direct parallel in our lives. More than that, the tardigrades are such an alien life form. Their perception of the world is not at all typical. Their bodies consists of a head, three body segments each with a pair of legs, and a back end with a fourth pair of legs. Their feet have four to eight claws each. They have an unusual and complicated feeding apparatus at the front end, resembling a kind of retractable trumpet. They grow to a maximum length of 1.5 mm (0.059 in) and so may be seen by the naked eye but are generally best viewed under a microscope.  

Tardigrades have been around for at least half a billion years, to the best of our knowledge. I believe that, after the coming climate catastrophe, they will outlive Homo sapiens and may well become a dominant species in their own right if the planet does indeed become an extreme environment. Who knows - they may grow and develop as they evolve happily in this different world. All hail the tardigrades! 

Social Isolation

Readers of this blog will be aware that, as well as being autistic, I have severe unbalanced hearing loss and tinnitus, thanks to Ménière's disease (a balance disorder with consequences for hearing). I have written about the overlap between Ménière's and autism before. Social isolation is a well-known consequence of both hearing loss and autism, often linked to loneliness, higher health care needs and increased mortality rate. I mention all this, because the story I am about to tell illustrates how this affects people like me, even when everybody around has the best intentions and tries to help.

A couple of weeks ago, I attended the Internoise conference at the Scottish Exhibition Centre in Glasgow (an enormous venue where the COP26 summit was held). I was invited to chair a panel on Aural Diversity (a research project about hearing difference that I lead). Internoise is the largest conference in the world on noise control engineering. As you can imagine, the kind of research they deal with is mostly large-scale and industrial in nature. So it was a rare thing to find them being receptive to the idea that not everybody hears with perfectly normal ears. This shows that the kind of advocacy I and many others engage in is beginning to penetrate. 

My session went very well and we had a lot of positive feedback and interested engagement from the scientists and engineers. This post is not really about the academic side of the conference. If you want to find out more, then the website given above and the new book on Aural Diversity that I co-edited should suffice. 

I sent the conference organisers my Access Rider well in advance, and they shared it with the venue. This really paid off, because I was well looked after. I was personally greeted by very sympathetic people who were keen to help, and eager to learn more about what they could do to support me. I had a quiet room, complete with suitable lighting, stim toys and an emergency bucket in case of vomiting (fortunately not used). The session I chaired was well managed, with low level lighting and silent applause. In other sessions, I had reserved seating at the front. I was given navigation guidance and centre staff helped me quickly and politely if I lost my bearings. All in all, it was superb and the result was that I ended each day with sufficient spoons to be able to enjoy the evenings.

On the final evening, there was to be a social event. Normally, I would not attend such events, but on this day I had no panel to chair and no papers to give and all of my aural diversity colleagues had left town, so I thought I would give it a go. Armed with my survival bag (noise cancelling headphones, personal air purifier, clip-on sunglasses, etc.) I set off on the half hour walk across Glasgow to arrive at Merchant's Square, an enormous and historical indoor market that was filled with retail outlets and restaurants. It had been booked out by the conference and we were welcomed in by a piper (great!) and the main organiser who had been so nice to me.

The plan was for supper followed by a ceilidh (Scottish dancing). I had already decided that I would leave before the ceilidh, but I was looking forward to the supper and perhaps having an opportunity to meet some of the delegates who were not aware of aural diversity. However I had, of course, completely underestimated the overwhelming scale of the place and the wave of noise. There were several hundred people all talking in a space that was vast and echoing. Within ten minutes, I realised that my headphones were not sufficient to prevent the noise getting through, and my proprioception began to collapse as I could not see the corners and I started to lose a sense of my physical presence. 

It was a dangerous situation and I knew I had to get out (all thoughts of social interaction had already departed). As I rushed for the exit, the nice organiser spotted me and was immediately concerned. I explained the situation and she quickly summoned one of the restaurant managers. I was offered a free meal in an isolated spot. I was naturally very grateful and so found myself sitting in a side area away from the crowds, eating a meal alone, before anybody else had been served food. I ate it as quickly as I could and left. My social isolation was complete and it took a big social event to reveal just how socially isolated I am.

There is a twist to this tale. It was too early to go back to the hotel, so I walked across town and ended up in a traditional Scottish whisky bar. There were only a few people there and it was quiet, so I happily sat and drank a very nice single malt (Port Charlotte). The barman, looking to increase clientele, asked if I would mind tagging my location on Facebook, which I was happy to do. Suddenly, an old friend of mine from Amsterdam messaged to say that he happened to be in Glasgow that night! I had not seen him for ten years, so it was a real joy when he appeared in the bar and we spent a wonderful evening together, talking, drinking and reminiscing. I am quite content to sit on my own, but I am also very happy to be with a friend or in a small group. 

Social isolation is a real issue for people like me. I think it has affected my career, especially in music which seems to rely on networking and self promotion. It is ironic that noise was my biggest problem at the social event of a conference devoted to noise control. The people who are most concerned with reducing noise turned out to be unable to control it themselves. It mirrored my position at the conference itself: an interesting insertion into a field that is yet to recognise the full extent of the diversity of lived experience. I like to think that my evening will have had an impact on the organisers, such that they might in future years be able to offer alternatives to gathering everybody into one big space like that.

 

Access Rider in action!

 Earlier this week I gave a keynote presentation to the UK Acoustics Network‘s Annual Meeting. My topic was Aural Diversity and I took the opportunity to showcase the infographic that I have created that attempts to describe the entire field. Aural Diversity, rather like neurodiversity, draws attention to the wide range of differences in hearing between people (and animals, and machines). Everybody hears differently, something that is a neglected aspect of many disciplines, not just acoustics. The general assumption is that people possess a pair of equally balanced and perfectly healthy ears. The reality is that only about 17% of the population (the group of healthy 18-25 year olds) possess those. Everybody else has some kind of distinctive difference. Neurodivergence, and specifically autism, is included on the infographic.

The UKAN event involved me staying two nights in a hotel in Manchester, where the conference was to take place. This was the first time I had been away from home since the start of the pandemic. Consequently, it was also the first opportunity to try out my Access Rider. I was first asked to produce an Access Rider in 2021 by The Space, when they commissioned my Spectrum Sounds. I was assisted in its preparation by the wonderful people at Unlimited. It was a very interesting exercise, getting me to focus on my needs and find ways to express those so that others could understand. I would greatly recommend to others that they prepare Access Riders too, especially if they work in areas that frequently involve venues and audiences. Unlimited have created this excellent guide to help you.

I sent mine to the UKAN team well in advance, and they took it very seriously. It was really gratifying to find so much of what bothers me taken care of in advance. It made me feel welcome but also, rather like with disability assistance in airports, it made the whole experience much easier to manage. Special thanks go to Zoë Hunter, who made sure I was looked after and also spent quite a lot of time listening to me ramble on! Well beyond the call of duty.

The emergency contacts were well noted, but fortunately were not necessary. I was nowhere near a crisis at any point, which is a credit to the organisation. The Hyatt Regency Manchester, having been made aware of my needs, not only put me in a wonderfully quiet room which smelt of nothing, but also provided a separate lunch for me in, appropriately enough, the Turing Room. This meant I could avoid the noise and bustle of the restaurant, which was great. The lighting was appropriate, there was no pressure on me to interact any more than I wanted to, and I was able to avoid looking at the rather hideous carpet design most of the time.

There were a couple of specific things worth reporting. Like most hotels, there was a regular fire alarm test every week. This hotel did theirs on a Monday at 11.00. Fortunately, this was advertised clearly in the lobby and the lifts. My session was due to end at 11 on the Monday. With prior agreement, I was able to leave the building five minutes before the hour. Everybody took this in very good humour, and there was no problem. People asked me questions later. And I avoided the alarm, which would otherwise have stolen at least two spoons for the day.

At the end of my talk (which was the first in the day) the audience applauded. On my access rider, I had asked for no applause. The chair of the session was most concerned and apologised profusely. In fact, I was fine: the carpet and soft furnishings absorbed most of the sound, and the applause was brief anyway. But it could have been a problem on another occasion. So I took the opportunity to explain to the acousticians what the problem was. I explained that I much prefer “flappy hands”. They seized on this with pleasure and for the rest of the day there was no applause, only hands waving. I guess people are more familiar with this thanks to Strictly Come Dancing, but it was deeply appreciated and did much to ensure that I ended the day in good humour and with a decent amount of energy remaining.

To summarise: do use Access Riders! They really work! And thanks so much to UKAN for paying such close attention to mine. 

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?

Ageing autistically

This is a tricky topic to write about, because from my autistic viewpoint I cannot see what my nearest and dearest can see, so I am relying a lot on feedback from my wife for these comments. People often remark on how young I look, given that I am 65 this year. I’ve heard it said quite often that autistic people tend to look younger than they actually are. I don’t know if that is really true, but what I can say is that time passes at the same rate for everybody.

My experience of autism has been all about fitting into the neurotypical world as best I can. I’ve found a job in academia which I can do well (I couldn’t do anything else, I think) and I go to work vigorously, whether travelling to campus or working from home. I have routines which I follow relentlessly every day. These routines drive me forwards. I walk briskly. I work in bursts of highly focussed energy, usually petering out by early evening as the spoons run dry. I achieve a lot: teaching, books, articles, papers, compositions, consultancies, advocacy, strategic initiatives, administration, leadership, committees, etc.  The list goes on. I joke that I am semi-retired and part-time, but that is meaningless because “the university” requires me to do a full time job. That is only partly true. The full truth is that, even if the university did not make such demands on me, I would still work to the same level. That is the internal drive created by my autism. It’s what gets me up in the mornings.*

For the benefit of neurotypical people reading this, I should try to explain that this is quite different to just being hardworking or ambitious. Even on days off (e.g. Sundays) I will construct a routine to fill my diary. An empty diary page may induce anxiety, even panic. My self-imposed schedule is really a form of stimming, designed to calm me and give structure to my existence. The world is such a challenging place, that this provides a sense of purposeful forward motion. It’s almost like aesthetics: what Kant called “purposiveness without purpose”. The mind’s absorption into this activity is the highly focussed state that people call “flow”. In other words, I can make my daily life an autistic “special interest”.

But a problem is emerging. There is a certain reality that is now overtaking me, to do with changes in my body. As bits of it stop working properly (the process really started in 2009 when I was diagnosed with Ménière’s) I can understand that this is just the natural aging process at work. I simply do not have the energy that I used to have. The problem is that adjusting to this new reality involves changes in routines.

My autistic brain will make no allowances for these changes. I know that it should, but I just cannot make it cooperate. So I continue to drive forwards as though there has been no change. This drive fills both my waking and, as far as I can tell, my sleeping hours too.  There is no let-up in the need to structure and organise things. I’m afraid it is quite a cliché: the autistic urge to hyper-systematise everything. I do not know how to be any different to the way I have always been. 

My body is an inconvenient necessity that challenges me every day. My mind, on the other hand, continues to seek and learn, delighting in everything it discovers and creates. I am told there is danger in this scenario. My alexithymia** makes it difficult for me to know what I am feeling, and my interoceptive differences*** mean I cannot always tell what is going on internally. It seems there is a potential collision course emerging between my physical need to slow down and my mental need to keep going.

___

*  I have had some periods in my life when the above was not true and I fell into lassitude. Looking back on those times - many decades ago - it is really a miracle that I survived at all. I became very poor and aimless. Even suicide was thought about. So, the present version is much more sustainable.

** Alexithymia is the inability to identify one’s own emotions.

*** Interoception is the ability to perceive what is happening inside one’s body. Many autistic people, myself included, experience difficulties with this sense.