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!

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/resource/the-social-model-of-disability/

 

A description of how to create an autism-friendly environment

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

 

 

 

Why I don't drive

 

Autistic people can be perfectly good drivers. Some recent research shows that they are, if anything, safer than non-autistic drivers (with thanks to @AnnMemmott). But I am one of those autistic people who chooses not to drive. The world is a better and safer place without me driving in it!

I was 26 years of age when it occurred to me that I should learn to drive. I had resisted it at a younger age, explaining away my objection as a deep dislike of cars. In fact, I had a problem with the whole idea of bodies in motion and not knowing exactly where the edges of things are.

By the time I reached my mid-20s, this became too hard a position to maintain, both to myself and others. I felt that everybody else was driving so I really should learn to do it too. This was a mistake.

I passed my test first-time without a problem. I am extremely good at following rules and giving the appearance of being in control of the situation. Driving seemed to be all about that. I learned the highway code, found out what was expected of me, and performed very well during the test. No problem, right? Wrong!

First there were the intrusive thoughts. Noticing details all the time. For example, as a passenger I had this habit of memorising number plates. Now as a driver, I was taking my eyes off the road to read the plates. The same went for the patina of paint on road surfaces, the alignment of painted lines, any text on any vehicle (hyperlexia), and a hundred and one other distractions. 

Then there was the perturbation created by rule-breaking. Any driver knows that you have to bend rules sometimes for safety’s sake. Some, even most, break rules just because they feel like it! I would notice every infringement but worse I was incapable of breaking rules myself. This was highly dangerous in some situations.

Next was getting overwhelmed at junctions. As I approached the junction, I would start to anticipate it by imagining the various other roads that intersect that junction. I would then imagine the roads connected to those roads and their junctions. And so on and so on until my brain was occupied by an entire map of the local road network. Meanwhile, I was not paying any attention to the vehicles around me.

Another problem was literal interpretations. For example, there used to be a sign at yellow-hatched crossroads that said “enter only when box is clear”. Now I know that that referred to the entire hatched area, but my mind would not get past the idea that each small parallelogram was a tiny box and I should enter each one separately. To overrule this idea was exhausting. I had to try to drive smoothly when my instinct was to stop and start at every box.

Navigation was also always a major problem. I would memorise the route map before setting out (even on very small journeys) but would be unable to cope if the route was changed for some reason. I can remember shutting down on a major road, for example and even deliberately driving the wrong way up a one-way street when I thought that it would get me back onto my envisaged route. Big conflict with rule-breaking there.

Finally, I should mention the overwhelming sensory aspects, with lights, noise, colours, and objects in motion. The combination of these frequently became too much when overlaid on the sense of responsibility for others. This combined with my dislike of unclear borders to complete what was a highly over-stimulating environment. 

To anybody else, it looked as though I was driving just fine, but the truth of the danger of all this was brought home to me when I had a minor accident at a junction. There were suddenly no road markings (I think they were resurfacing) and I found myself completely without rules to follow, at which point the habitual confusion I experienced at any junction took over completely leading to bad decision-making that ignored the physical realities all around me. I’m just glad nobody was hurt.

I gave up driving six months after I started. Several years later, I remarked to my mother that I thought I might take it up again. She shuddered and said “it’s probably best if you don’t do that”. The world is a safer place for that advice!

The 'Neurotribes' conference, Sound Festival Scotland.

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

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

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

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

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

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

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

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

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

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

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

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

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

Christmas!

I see that several weeks have passed since I last posted a blog entry. This was due to the pressures of the last few weeks of term. Delivering online tuition is great in many ways, but it is also a lot more work, especially in terms of preparation. Added to which, the covid restrictions have created a lot of logistical and administrative challenges which add to the burden. So, I was working extremely hard in the run-up to Christmas.

Ah, Christmas! A festival dedicated to sensory overload and unstructured social interactions. What’s to like? Well, in some ways I don't mind Christmas. I understand that it’s a time to draw closer to family and to shut out the darkness with some festivity and light. I also get that once upon a time it was a period of feasting in anticipation of lean cold months ahead. But since I am not a Christian, Christmas itself has little meaning for me. I prefer the winter solstice, which signals something meaningful: the days finally beginning to get longer again. So, secretly, I celebrate that instead.

From an autistic perspective, the Christmas period can be very challenging.The notion that suddenly the purpose of existence has changed from "doing things" to "joining in" is a source of anxiety. There are a host of unwritten rules that govern behaviour. There are so many sensory issues and so much disruption in the name of “celebration”. It is impossible to avoid Christmas without being “the grinch” (and nobody wants to be the grinch). It’s a social minefield, and the fear of getting things wrong is amplified at this time of year. 

Consequently, Christmas Eve at 1 a.m. found me unable to sleep and listening to the '1800 Seconds on Autism' podcast. I have followed this since the beginning and have found it consistently excellent. I must have been one of the first listeners to 'The unwritten rules of dinnertime', which was posted as Christmas Eve turned. There was so much relatable content in this episode! 

Christmas day itself is supposedly the big occasion, but it can quickly outstay its welcome. And once the day is over, that is not the end of Christmas! It takes weeks to get into Christmas Day and weeks to get out of it. A kind of stupor takes over, characterised by aimlessness. I have been pushing to get started on my new year diet. I do need to lose weight, but more important is to be able to take control of eating and drinking again, to impose structure on the day, to measure and catalogue my food intake.

The giving and receiving of presents is stressful and complicated. How to react in the right way? Also, making the value of the outgoing gift relate appropriately to the incoming one is apparently very important. But ‘value’ is measured on an undisclosed sliding scale of sentimentality, suitability and financial value. It’s the rock-paper-scissors of Christmas, except that working out which trumps which is more or less impossible. Thankfully, my wife handles most of the present giving, so I am very fortunate.

The sensory aspects of Christmas are similarly very difficult. We finally seem to have managed to eliminate tinsel and shiny dirt (aka ‘glitter’) which has made things easier this year. My problem was that they festooned the walls and decor, interrupting my lines of sight of the corners and angles of rooms, distorting my proprioception. We’ve reduced the lighting to just one tree and a window display for outside which is shut behind curtains. The tree has to be artificial. One year my wife insisted that we have a natural tree. Within 24 hours I could barely breathe and the tree had to be relegated to the garden.

The lack of structure of Christmas Day is bewildering. What time do you get up? Once the presents have been opened, it is socially unacceptable to go upstairs and work, so what happens now? How can I meet expectations when I don’t know what they are? My wife found me standing in the living room with my arms folded, paralysed by indecision. Fortunately, she had bought me a Sherlock Holmes Escape Room puzzle book - one of those non-linear, "solve this to advance to page n" challenges - as a present and then allowed me to immerse myself in that for several hours. It was my escape, both literally and metaphorically.

As Robyn Steward pointed out in the podcast, lunch at 4 pm is not lunch! As always, the meal itself was pretty disappointing after all that preparation. Turkey just is not a very exciting food, and the meal has a certain blandness. Added to which, we have crackers and hats. This year, I’m happy to report the crackers did not bang and contained gin, so they were a great improvement on previous years. 

I’ve been reminded of the time a couple of years ago when we visited family at Christmas. The grandson was naturally very excited and we had the whole lot: TV on, lights and smells everywhere, chit-chat all over the place, a strange bedroom, etc. After a couple of hours of this I became overwhelmed and had to retreat to the bedroom where I was able to watch episodes of Big Bang Theory undisturbed. I’ve said before that I understand the representational problems with BBT, but I still find stability in watching the same episodes over and over again. This Christmas, I’ve started watching it again on Netflix from the beginning.

I’ve also started up chess again, somewhat inspired by ‘The Queen’s Gambit’ (another case of a central character who was most likely autistic but this was never mentioned - rightly so, given the time at which it was set). Twenty years ago, I was a pretty good chess player, playing to a reasonably high level in the local club. I’ve decided to revive my rusty skills, starting from the ground up. It’s good to see how the chess world has evolved, with a strong presence on youtube and via lichess. Chess is a structured world in which one has control.

I am typing this on New Year's Day. Christmas was not so bad this year as previous years, thanks to the coronavirus restrictions. It is a shame that something that has caused such misery to so many people should be the thing that brings me relief, but there it is. Even so, it was impossible to avoid Christmas altogether. Now that the worst is over and there is a pleasing prospect of a return to some kind of structured existence, I will end the holiday period by completing a few projects: some scientific reviews, some composition, and reading some books, including those given me as Christmas presents. 

Happy New Year!

Interoception

I attended The Autism Show’s web seminars for adults yesterday. It was a pretty interesting day, with some fascinating and heartfelt accounts of people’s experiences. 

One thing that came up more than once was “interoception”. This is a sense, alongside the traditional five (sight, hearing, smell, taste and touch) and the one related to balance (vestibular) and the sense of self movement and body position (proprioception). Interoception is simply defined as the sense of the internal state of the body and its processes such as heartbeat, digestion, muscular effort, and anything else that is going on inside. Interoception is commonly linked to our sense of wellbeing. In fact, referring back to my last post, it may be the most direct answer to the question: how do you feel? Since I invariably find that a very difficult question to answer, I decided to look more deeply into interception and its relationship with autism. 

Now, I should say that my vestibular sense is pretty distorted already due to Ménière’s Disease, which I have had since approximately 2007. Also, I have always had a problem with proprioception. This manifests most obviously as a dislike of large spaces whose corners I cannot see, because I use room corners to position myself. But I was most interested in the extent to which interoception overlaps with alexithymia, which is an inability to recognise and describe one’s own emotions. I am often aware that I am experiencing an emotion, but I cannot tell what it is and how it might be expressed. Does this come from distortions in my interoception?

I have quickly and superficially surveyed the research literature on this topic. It is quite small - a mere handful of papers - but very interesting. The most useful paper is a review of the field which summarizes the various published studies of autism and interoception (DuBois et al. 2016). This finds that “[...] interoception is an aspect of a sensory processing abnormality found in ASD that has not yet received much clinical or neuroscientific attention” (ibid. p. 108) and calls for more research. One key paper distinguishes between interoceptive accuracy, which is objectively measurable, interoceptive sensibility, which is a subjective belief about one’s own internal workings, and metacognitive accuracy, which is one’s own insight into one’s interoception (Garfinkel et al. 118).

It’s clear that this field of research is still developing, so any results are fairly tentative at this stage, but from a purely anecdotal perspective, I would say that my own lived experience tends to confirm their conclusions that there is a difference between these three and that some autistic people experience a “compromised interoceptive channel” (ibid. 123). Well, this one does, at any rate, and so did the majority of the twenty participants in their study. I would say that I have diminished interoceptive accuracy but enhanced interoceptive sensibility, resulting in a dislocation between the two that has consequences for emotional processing. That explains some of the minor but troubling  physical problems I have with some body functions and the resulting anxiety that attaches to those.

It makes sense to me that since I have issues in relation to the more familiar senses, I should have similar challenges with regard to this less well-known one too. I’m going to continue researching this, because I think it may become very valuable in trying to figure out ways to self-manage. I don’t hold out much hope that the medical profession will be up to speed on this, but you never know. Perhaps I’ll mention it to my GP next time we have a consultation…

References

Denise DuBois, Stephanie H. Ameis, Meng-Chuan Lai, Manuel F. Casanova,

Pushpal Desarkar, ‘Interoception in Autism Spectrum Disorder: A review’. Int. J. Devl Neuroscience 52 (2016) 104–111.

Sarah N. Garfinkel, Claire Tiley, Stephanie O’Keeffe, Neil A. Harrison, Anil K. Seth, Hugo D. Critchley, ‘Discrepancies between dimensions of interoception in autism: Implications for emotion and anxiety’. Biological Psychology 114 (2016) 117–126.

Accessible Home Working

I was recently asked to comment on a document about accessible home working. The aim of the document was to provide advice to managers and staff about how best to make online working in the university accessible for people with disabilities. It was already a pretty good document, but I like to think I enhanced it with my comments.

There were a few items worth blogging about. The first was to do with good practice in writing emails. Like most academics, I receive hundreds of emails a week. It’s quite surprising to what extent I encounter the same issues in email that I find when dealing with people face to face. I am forever trying to figure out what people really mean, only to discover later that they didn’t really have any particular meaning. I may understand this intellectually, but I find I am unable to recognise it in the moment, so I easily misread or misunderstand the writer’s intentions. I have in the past sent emails that have got me into a lot of trouble, so I am perpetually terrified of making a mistake. At the same time, I still make mistakes! Needless to say, this increases anxiety.

A lot of it has to do with perceived tone of voice. I find that I often ascribe a tone of voice to emails that I perceive as harsh or abrupt. Often this is not the intention, but my anxiety is greatly increased because I get this impression. Usually the impression can be easily offset by a simple change of tone. To give you a simple example, an email that begins “Hi ...” is already more friendly to my ears than one that begins more formally with “Dear ...”. This is probably a result of history. An email seems like a more casual, less considered form of communication than a letter and the use of ‘hi’ seems to acknowledge that, not least because it involves less typing. I’m comfortable with that. If, worse still, an email begins with just my name, or with no initial statement at all, I perceive it as aggressive and I have to struggle to resist that impression from that moment on. 

Academics are an argumentative bunch and quite often there are email ‘wars’, some of which are fine because they concern scientific or intellectual disagreements which are generally a good thing in a university. However, there is another kind of war that involves people challenging others (usually management) on quite a personal level. Invariably, these people feel the need to copy in the entire department in order to try to drum up support or, in their view, expose wrongdoing. Sometimes I agree with them, sometimes I don’t, but I always find these kinds of arguments massively anxiety-inducing and never join in. Accusatory discourse shatters the illusion of collegiate working that, however naively, I still like to believe in.

Another line in the document advised: “Be aware that body language and social signals are less easy to interpret via video.” I pointed out that body language and social signals are difficult to interpret at the best of times from an autistic point of view. My suggestion was that people should not even attempt to use body language during a video call, but rather should concentrate on what they are saying and try to avoid statements that are sarcastic, ironic, and so on. It’s possible that video communication could actually be better for many autistic people if that step is taken. Not all of us will feel the same, but I welcome not having to try to decipher endless social cues.

There was a whole section on “keeping in touch” which advised establishing regular “social breaks” in order to help people feel connected to colleagues and avoid social isolation. Now I have mixed feelings about this. On the one hand, I do think it is a good idea for people to stay in contact and sharing does combat isolation. But, and I pointed this out, one of the great benefits of online communication, from an autistic perspective, is the removal of the need to engage in endless “chat” with neurotypicals.

Finally, I attended an online meeting the other day in which the organiser had decided to use an “ice-breaker” exercise (always an odd phrase, that, but I know what they mean). We were asked to indicate (using a ‘pen’ on an online whiteboard) how we were feeling, on a chart which ranged between happy and desperate. This completely threw me, because my alexithymia means I never really know how I am feeling and it takes a great deal of effort to try and figure it out. There was no option on the chart for “I don’t know how I feel”, so the only solution I could come up with was to write that in the chat box. People responded nicely, but I was already far from comfortable with the situation, as they merrily put up coloured crosses to indicate their feelings, had a chat about them, and agreed that this was a great way to start a meeting. For me, the meeting was actually quite spoiled, because I spent the rest of it thinking about the exercise rather than concentrating on the business in hand. So the metaphorical ice expanded and hardened for me. And in any case, probably the straightforward answer to the question “how do you feel” is the one proposed to me by an autistic friend: “with my fingers”! 

There is a lot more that could be said about accessible home working. But I am very pleased that the university is taking this so seriously and involving autistic people directly in the formulation of advice and policy.