Advocacy: some challenges and benefits

I took the decision to start advocating back in 2017, after more than a decade of concealing my hearing and balance issues, and of course a lifetime of masking my autism. I decided to be more open about it all in the hope that I could increase awareness of the challenges facing people like myself and even change the world a bit for the better. 

It was not an easy decision. I am not someone who likes to share personal experiences in this way. I’d rather be professional and just get on with the job in hand. So why do it? Because I feel a responsibility to try to improve things for other people. 

I am a privileged person in a senior position in a university. People tend to take notice of what I say. Of course, it should not be this way. Everybody’s voices should be heard. But I am very aware of the many autistic people whose voices are not heard. Since I am able to influence things, I feel it is my duty to try to put over an autistic viewpoint, even though of course I recognise that I do not represent all autistic people and would never claim to do so. 

My mission, as I see it, is to be intensely and publicly honest about my own experiences, in a way that enables others to understand the various challenges and difficulties they create. Not because I am seeking sympathy or trying to get the entire world to configure itself to suit my needs - everybody has challenges and difficulties - but because mine are representative of a proportion of the population who have traditionally been marginalised or excluded. 

That makes me an advocate, and consequently I call out ableism when I see it and do my bit to support other autistic people by working with groups or organisations like the NHS and local councils. I use my national and international platform to advocate too, through projects like Aural Diversity and Spectrum Sounds. 

To give a few examples:

• while advocating for aural diversity, I have had an impact on the Welsh Government, whose recent call for responses to their proposed noise and soundscape plan included an entire section headed “aural diversity”. This led to me attending the Institute of Acoustics annual conference, at which I felt obliged to be very “out” about my identity.

• I recently took a stand on the use of awaydays (see my previous post on the subject) in my university. By raising this in various committees I have demonstrably raised awareness of the issues and probably changed policy. The cost was having to be very public about my autistic needs.

• At my local GP surgery, I have raised issues about the use of fluorescent lighting in the waiting area. I’m not sure whether this will change - it seems that can take a very long time - but in the process one nurse did confide in me that the lighting had a bad effect on her too. Anyway, to do this required me to be very honest about my autism to strangers.

While I can point to many such successes and examples of how my actions have made a difference, being an advocate does present challenges. I find that constantly being the one with the problem becomes tiring. I have a feeling that people might be rolling their eyes and thinking “oh no, it’s him again, endlessly talking about autism and/or hearing issues”. Part of me wants to go back to concealing and just “sucking it up” in the interests of moving things forward, regardless of the consequences for me. But another part of me resents this and says: why should I suffer to enable them to have things a bit more easy? Since I no longer fear the professional consequences of disclosure, I am much more willing to speak out. At the same time, I do not speak out about everything. That would be too exhausting. You have to choose your battles. 

The process of becoming aware of the social and environmental problems that beset autistic people itself tends to make you more sensitive. That sense of injustice that so many of us feel so strongly can also be injurious to your own wellbeing, especially if it cannot be channeled into positive action. The suspicion that those around you are quietly moving away, too, can be very disturbing, as you realise that something unspoken has changed and that attitudes have shifted. There’s that constant fear that suddenly you’ll find everyone ranged against you because you’ve “gone too far”. Classic autism.

At those moments when I become over-anxious or dispirited in my efforts, I remind myself why I am doing this. After which I become even more determined to carry on with trying to make life better for everyone. Nothing worthwhile is achieved without a struggle. Sometimes I must “take one for the team” by speaking out in an awkward situation. So be it. I always try to act with courtesy, dignity and respect for others, so I hope I do this without giving offence. But sometimes you just have to be clear and assertive, which can be surprising for people.

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 and in an unfamiliar environment that may or may not be well suited. 

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 https://en.wikipedia.org/wiki/Spoon_theory 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 or shutdown later.

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.

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.