Thursday, 14 September 2023

Awaydays, and how to include autistic people

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

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

From an autistic perspective, this amounts to a nightmare. Awaydays cause more anxiety and distress than almost any other activity. Having established a working pattern and set of routines at work, the autistic employee is suddenly required to stop all that in order to undertake a series of activities that rely on social interactions whose purpose is often unclear. 

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

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

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

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

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

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

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

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

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

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

Friday, 1 September 2023

Experts by Experience

Over the past couple of years, I have joined the ranks of autistic ‘Experts by Experience’ (EbE) who take part in consultations with organisations ranging from charities to the National Health Service to local councils. When I first heard that phrase I was intrigued, because in the academic world somebody like me would normally be an expert on a topic that stands apart from their lived experience. So, whereas I am a Professor of Music, in which I have worked since childhood, the pillars of my expertise do not rely on my lived experience as a composer and musician, but rather on the scientific and artistic knowledge about music that I have accumulated along the way. 

The need for these EbE has arisen fairly recently and mostly from social care. It is recognised by the sector that talking to professionals alone is inadequate, if you want to capture the knowledge required to make progress. For that, the voices of people on the receiving end also need to be heard and indeed given an equal footing. So, EbE are recruited to advise and contribute to discussions of strategy and policy as well as practical and organisational issues. In many ways, this is a very welcome development. Giving voice to traditionally under-represented groups has to be a good thing. However, there are also a few problems.

First there is the question of representation. I have frequently raised this issue. While I am delighted to be involved and contribute my insights, I am hardly representative of the whole of autistic people. In fact, those people who most need the services provided are often the ones least represented. For example, non-speaking autistic people and those with learning difficulties are usually absent. 

Second, there is the thorny issue of remuneration. In all the groups I belong to, my advice and input has been sought without remuneration. Yet the professionals involved are being paid. So, a familiar picture of oppression and exploitation emerges in which autistic people provide their services for nothing, while others make their careers out of autism. I have raised this frequently and vociferously, and I am confident that the professionals do understand the problem, but nothing has been done so far and so resentments build among the autistic community.

Finally, there is the question of how EbE are chosen. Everybody has a lived experience, of course, so in theory any autistic person could be included. But there are clearly qualities that are required of EbE. These typically include an ability to talk openly and share with others. Since these qualities are determined by neurotypicals, this can become a source of difficulty, especially when autistic people start to express themselves. I have heard of meetings where rules have been set that constrain the EbE, when it is precisely in their unique expression that the autism resides. 

Despite these problems, I fundamentally like the idea of EbE and am happy to make my contribution as one. But the process of selection is fairly unclear at the moment. It would be good to have a transparent set of selection criteria, both to encourage inclusivity and to discourage people from arbitrarily using the EbE label.

Thursday, 30 March 2023

Unconscious Bias and Autism

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, 28 October 2022

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! 

Sunday, 18 September 2022

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.


Saturday, 9 July 2022

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. 

Wednesday, 18 May 2022

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 

Apart from the academic review panels, there is also an Equality and Diversity Advisory panel, whose remit may be viewed here 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?