From Diagnosis to Dialogue: Reflections on Autism Advocacy

In the seven years since I was professionally identified (or "diagnosed") as autistic, I have gradually developed a role as an autism advocate and occasionally even a consultant. I've done this out of a sense of responsibility, feeling the need to use my relatively prominent position to speak up about autism, indeed to represent it by being myself as much as possible. 

At times, this has been a little bit uncomfortable because, as I always say, I cannot speak for all autistic people. At the same time, I feel I do have a pretty good understanding of autistic issues, including those affecting people with learning difficulties or non-speaking people. I know several such individuals personally and whenever I am with them I am struck by how well we understand one another, whereas I can often struggle to understand neurotypicals. This is the famous double empathy problem in action. 

So much of what I do has been a process of translation: between lived experience and institutional practice, between neurodivergent insight and neurotypical assumptions, between urgent need and bureaucratic tempo. What began as a necessity - responding to the marginalisation and misunderstanding of autistic people - has developed into a more strategic form of engagement, helping organisations, companies, projects, universities, funding bodies and more navigate questions they didn’t always realise they needed to ask.  

To make these translations requires understanding both myself and autism more generally, and being able to communicate those insights in a whole range of situations from formal meetings and consultancies through to casual encounters. This can be quite challenging and indeed tiring, but I measure success and satisfaction in terms of small victories. The most meaningful outcome is not structural change but a quiet moment of recognition, for example a person reconsidering a long-held assumption or an organisation rethinking its definitions of excellence. 

At the heart of my work lies a deceptively simple proposition: autistic people should be involved in decisions that affect autistic people. Yet in many academic and cultural settings, this principle is still treated as novel. 

My first steps were the monthly Propeller workshops at BOM (Birmingham Open Media). Fresh from diagnosis, I encountered a group of other autistic adults for the first time. It was a remarkable experience and really helped me to understand the commonalities between us. We came from very different backgrounds and had widely varying support needs, but found an immediate and very direct form of communication that was open, honest and very rewarding. Full marks to Chloe Lawson, who ran those workshops with care and insight.  

Since then I have: 

 - served on disability panels at the University of Leicester, where I also founded the Staff Neurodiversity Group;

 - worked with the NHS and the local council on the Leicester Autism Partnership board, where I have also helped to develop the Autism Space website;

 - advised venues and organisations such as Leicester Railway Station, Phoenix Cinema, Attenborough Arts Centre, and many more, on interior design and accessibility;

 - been part of disability consultancy groups such as All-In Leicester, the Phoenix Advisory Group and Life on the Level;

 - worked as a consultant with large organisations such as Arup, Atkins Global and even the House of Lords; contributed locally through advisory roles with MBD Ltd and Attenborough Arts centre and work with ArtReach on disability leadership in the Midlands;

 - in artistic contexts have worked with the Percy Grainger Society, The Space, the BBC and Unlimited on various autism-driven arts projects, podcasts and web developments;

 - worked with charities such as Mosaic, which aim to improve the lives of autistic people.  

More important than all of this, however, are the many personal interactions I have had with both autistic and non-autistic people, during which I have tried to discuss and translate autistic issues as best I can. All the while I remain conscious that my very presence is itself the most powerful representation. To simply be autistic in professional and public contexts is to represent something that is still all too often invisible. 

This work requires stamina, strategy and no small amount of patience. But it also brings a peculiar joy: the joy of working towards a world where autistic people are not just accommodated, but understood and valued. 

That world is not yet here. But in every consultation, conversation or contribution, we help bring it closer.

Dealing with scepticism

Lately, I’ve found myself repeatedly trying to explain to people how my autistic experience differs from their neurotypical one. I'm often asked about this: how I perceive the world, how I relate to people, how I think, how I process sensory information, and so on. I like to talk about it, not in order to put myself at the centre of the discussion, but to try to make a connection with others. I’ve always done it really, but before I was diagnosed I did not know exactly what I was doing. 

Most of the time, people respond with interest. I’m good at articulating things and they seem to appreciate that. Perhaps they are just curious, or perhaps something I say resonates more deeply than they expect. While it can be exhausting to translate my lived experience into terms they can relate to, I persist because I have a sense of responsibility to advocate and to try to counter some of the negative myths that surround autism.

But every so often, I run into someone who, for reasons of their own, decides to tell me who I am not.

It usually begins innocently enough, perhaps with a compliment like “I can’t believe you’re that age!” (I’m 67). I do look young for my age ( many autistic people do), but what starts as a friendly comment often morphs into something more sceptical.

Sometimes the first target is my balance disorder and hearing loss. Those are both invisible disabilities, so they’re not always easy to spot, especially since I subtly use a lot of technology to help mask them. But demonstrating their reality is generally fairly straightforward, because they are “measurable”. I shouldn’t have to do it, but occasionally I have actually shown someone my audiogram to prove the point. 

But those are not the heart of the issue. What people really want to contest is the autism. The scepticism takes forms that will be familiar to other autistic people:

“But I have some of that myself.”
“You’re just trying to be different.”
“Everyone I know has a diagnosis these days.”

What’s being questioned here is not just the label, it’s the validity of my experience. Beneath these remarks lies a suspicion that I’m exaggerating, mistaken, or seeking attention. 

I suspect part of the problem lies in the language I’m forced to use. When I try to translate autism into language that neurotypical people will understand, I have to describe lifelong realities using words that, in their world, describe fleeting, temporary things. For example, whereas I may be over-sensitive to certain sounds, disoriented by some lighting, violently distracted by certain fabrics, or overwhelmed by particular smells, they will experience the same thing as a temporary annoyance that can be filtered out. Likewise, if I talk about hyperfocus and attention tunnels, they will think of being absorbed, unaware that for an autistic person the cognitive resources are so dominated that switching out is difficult. Similarly, masking = just putting on a professional face, or playing a role. Literal or patterned ways of communicating, or in my case scripting, are just seen as enjoying clever language and not a core identity. The absolute need for predictability and routine translates into a flexible desire for the same in certain situations. The ongoing background anxiety caused by social and sensory issues in the environment becomes temporary stress triggered by specific situations and not tied to the basic structure of everyday life.

I recently wrote: “I’m not trying to be different. I’m just not pretending to be the same.” That sums it up really. I don’t seek difference, I live it. Yet I’m occasionally treated as though I’ve chosen this path for dramatic effect, as if autism were a lifestyle or a fashion statement, rather than a fundamental state of being. Someone wrote to me recently “you’re not the person you pretend to be”, which is about as double-edged a “compliment” as it is possible to get.

Translating lived experience across neurotypes is always difficult. But I wonder why I have to defend myself so often against this kind of scepticism. I can see that my advocacy opens me up to challenge, especially since I have chosen to make my autism public. It would be easier, in a way, never to mention the fact and to leave it out of the conversation. 

At the same time, I think it is important, since I am a reasonably prominent person, that I challenge people’s expectations. Just because my neurotype or disability does not conform to what they expect does not mean that I should have to minimise it to make it more palatable. It’s a simple gesture of respect to listen to and believe others when they speak about themselves. And that small shift - from doubt to trust - can make a world of difference.

Proprioception, Autism and Me

What Is Proprioception?

Contrary to what we were taught as children, we don’t have five senses, we have eight! Alongside sight, hearing, smell, taste and touch, there are: the vestibular sense (balance); interoception (inner sensations); and proprioception, which relates to body position and movement in space. Proprioception is the quiet, constant sense that tells your brain where your body is and how it's moving. It's how you know your arms are raised even if your eyes are closed. It’s what lets you scratch your nose in the dark, or walk without looking down at every step. 

How It Affects Me

My proprioception is compromised in two respects. First, I have a balance disorder (Ménière’s), which affects the vestibular sense first and foremost, but is also closely connected to proprioception. Second, it is affected by my autism. It can be hard to disentangle these two (I have written elsewhere about the overlaps between autism and Ménière’s), but since I can date the onset of the balance disorder quite precisely (2007), I do have some memories of what I was like before that to go on.

When proprioception is unreliable, the world becomes harder to navigate. You might miss steps, misjudge where your hands are, or feel disconnected from your body entirely. Back in January 2024, for example, I fell and broke my elbow because I could not judge the edge of the kerb when walking in the dark. I was never any good at sports and prefer to work at a computer where I can be sure of my position. I always look down at the pavement when I walk. If I cannot see the corners in a room, then I start to lose a sense of where I am - I become a kind of amorphous blob, like one of the coloured shapes in a lava lamp.

Hyposensitive vs Hypersensitive Days

I experience a mix of what’s called proprioceptive hyposensitivity, when the signals from joints, muscles, and tendons are too faint or inconsistent, and proprioceptive hypersensitivity, when body feedback feels overwhelming. In the hyposensitive state, I write or type too hard with the pen or computer keyboard, sometimes stumble because I don’t get a clear signal from my feet (which feel removed from me most of the time) or I misjudge my strength when hugging or closing a door. In the hypersensitive state, I get a painful buzz in the skin from labels in clothing or even from having a haircut, and a frequent sensation of being too physically present in my body, if that makes sense.

 

What’s complicated is that these sensitivities aren’t consistent. On some days, I move through the world with reasonable grace. On others, I can barely judge the space I take up. A simple action such as reaching out to pick something up can feel like an exercise in guesswork and luck. I’ve had people assume I’m drunk when I’m simply trying to stay upright on uneven ground, especially during the height of Ménière’s. I can feel like I’m slightly delayed in space, as though my body and my awareness of my body are not quite in sync. Sometimes I don’t trust my limbs to stop when they should. Other times I feel I’m floating around myself, not fully anchored. My balance disorder adds another layer: the floor can feel like it’s shifting, and visual cues don’t always help.

This is a major part of why places like airports and supermarkets are such a nightmare. I can’t locate myself without seeing the corners and so all the other stimuli rapidly become overwhelming. I prefer small rooms with clear colour or texture distinctions between floor and walls. It’s a daily challenge and quite exhausting, because there’s a cognitive load that comes with having to constantly monitor your body’s position.

Living With the Sensory Tug-of-War

If proprioception is one of the body's internal GPS systems, then balance is its gyroscope. It relies on the vestibular system - structures in the inner ear that detect motion and orientation. When the vestibular system is faulty, the world can spin, sway, or lurch without warning. As my brain tries to piece together input from sight, touch, proprioception, and the vestibular system, it can struggle to make coherent sense of it all. The result is a sort of sensory tug-of-war. I might know I’m standing still, but feel as if I’m drifting away. Or I might feel a need to constantly adjust my stance, even when the surface is stable.

I’ve often said I don’t believe in reality, which has always been taken (by myself and others) as an amusing philosophical position. However, I now see it as literally true, and an expression of my proprioceptive issues. There are times when I feel strangely disembodied, like my “self” is hovering slightly outside my skin. This is not conducive to physical grounding. 

Grounding Strategies

I have adopted various strategies to compensate for all this. They are quite subtle but there nonetheless. For example, I love to wear a backpack that is full of gadgets and other bits and pieces. The weight and even pressure of it helps to position me in relation to the ground and the world around me. When I switch to a small, side-worn “man bag” I find that I lose the sense of location that the backpack gives me. The man bag, nice though it is, feels too feeble and lopsided to work. I also use quite a lot of well concealed stimming, pressing against objects, fiddling with things, holding onto rails, tapping lampposts as I walk past, letting my fingers run along fences, and so on. These all help to keep me grounded, to feel where I am.

Reflections

When I reflect on all this, I think I have underestimated the importance of proprioception in my life, something which Ménière’s has really helped to bring to the fore. Because of this awareness, I reckon I now have a deeper relationship with my body. It’s not a comfortable relationship, but it is honest. I have to pay attention to it and try to adapt to its needs. The consequences of resisting or ignoring this requirement can be catastrophic, so I do try, however inadequately. Some days, I feel like a patchwork of sensations and delays. Other days, I find a rhythm, a balance, a fleeting sense of presence. Those moments are small victories.

Interviews and Autism: some thoughts

During my academic career, I have chaired or sat on hundreds of interview panels. I went through the necessary HR training more than once and have read many guidance documents and briefing notes. Since being professionally identified (or “diagnosed”) as autistic in 2018, various issues that have always bothered me have come to the fore. I believe I have had some small impact on changing the interview process itself. However, and despite that, interviews remain a game designed by neurotypicals for neurotypicals. Given that they are a heightened and unnatural situation, those who understand how to role play and dissemble, how to engage in all those small social cues that provide mutual reassurance amongst groups of like-minded people, are the ones who normally succeed. The same would be true of an interview situation comprising mainly autistic people, but those are relatively rare. The structure and HR approach to interviews is most certainly designed by neurotypicals, although there have been attempts recently to be more inclusive. As always, those attempts are a bolt-on to standard practice: “if you are interviewing an autistic person then you should…”. It is often impossible to know that the person you are interviewing is autistic!

When I compare my experience as an interviewer with my experience as an interviewee, a marked difference emerges. I have had four major jobs in my career, and I have not been interviewed for any of them. In every single case, somebody has decided that I am the right person for that role and has invited me in. In other words, I have always been headhunted. I have only ever done two actual interviews. The first was for an academic lecturing post at a different university. The interview went as badly as might be expected, with all the usual autistic anxieties about the venue, the situation, and sensory issues, combining to lead me to overshare massively in answer to their first question. (I did meet the chair of the panel at a conference several years later and he was kind enough to express regret that they did not appoint me, which was very generous of him). 

The other interview was internal, when I was encouraged by the Vice-Chancellor to apply for a senior management position. The interview was conducted in a vast glass and metal building in central London by a slick team of HR consultants. I had no opportunity to familiarise myself with the building beforehand, no idea where I was going or who I was to meet, and no efforts were made to create a suitable sensory environment for me. My brain cannot be active if I am sensorially overwhelmed, as I was on this occasion. The interview was disastrous because they asked me what I thought of the Vice-Chancellor and I gave a full and honest reply which was pretty negative. Autistic people are always honest and direct in their answers to interview questions, regardless of the consequences for their own prospects. Looking back, though, I reckon I had a lucky escape!

Before becoming an academic at the age of 29, I survived in a haphazard way on a mixture of unemployment benefit (“the dole”, without which I would probably not be here today) and occasional casual work. I never held down casual work for long (it included things like collating traffic surveys, screwing the baseplates on mannequins, and working in a food warehouse) and I was never interviewed because I was placed in these positions by the dole office. Avoiding being interviewed was a key part of the reason for my lack of regular employment. I also did quite a lot of copying music parts for publishers and composers, something that again I could do without being interviewed and which I could do at home. At the time, I was unaware that it was the prospect of being interviewed that drove me away. Now, of course, I realise that that was a major reason, alongside the fear of having to mix with colleagues, working in unfamiliar environments, etc. 

Since my diagnosis in 2018, I have become much more aware of the issues facing autistic people who go for an interview. To give one example, I have repeatedly challenged HR (Human Resources) departmental advice to interviewers that they should assess a person’s body language and eye contact. This seems to be something all HR people are taught and fits with ridiculous clichés such as the idea that people are more honest if they look you in the eye. The whole idea of “body language” seems suspect to me. As far as I can tell, neurotypicals lie with their bodies all the time, and the notion that they share mutual understanding that way is just a comforting myth to make them feel reassured, a form of social bonding if you like. Needless to say, autistic people find all that utterly baffling and generally do not conform to normal expectations of how their bodies should behave.

Reinventing the interview process is a massive and probably unrealistic task. Organisations generally do not have sufficient time and resources to devote more to interviews. However, the downside is that many autistic people then either fail at interview or, more often, never get to the interview in the first place. There are numerous statistics around about the disproportionately low levels of employment in the autistic community. The National Autistic Society sets it at 30%.

What can be done? Ideally, I would like to do away with interviews altogether and replace them with a kind of probationary working model where people are given an opportunity to experience the real environment of the job for a week or two (during which time they would be paid, of course). One of the commonest mistakes autistic people make is to assume that they should try at all costs to get the job for which they are being interviewed. This is wrong because interviews should be a two-way process, in which both interviewers and interviewees figure out if this is the right ‘fit’ for them. Allowing a longer time to come to that judgment is the best solution, and would lead to far fewer bad appointments or, indeed, devastating rejections, being made.

Failing that, there are some practical steps that organisations can take to help autistic people who come for interviews. There are numerous good pieces of guidance online from, for example: the University of Bath, Autistica and the Buckland Review of Autism Employment. I’d distil these into the following key points:

1. Provide the candidate with videos of the interview venue in advance, or even a visit.
2. Give candidates the questions they will be asked in advance too.
3. Do not try to make candidates “think on their feet”. (That phrase is a typical example of metaphorical language to be avoided. Even as I write it, I become confused, even though I know exactly what it is trying to express). Even if the job involves having to respond quickly to situations, there is a great difference between doing so within a secure context and doing so in an interview.
4. Be sure to use clear language without metaphors and ambiguities. Speak literally.
5. Be very careful about the physical environment. Potential sensory issues include strong lights (strip lighting is the worst), unexpected sounds, strange smells, and so on. It is best to check with the candidate beforehand what bothers them. 
6. Avoid interruptions and stick closely to schedule. Include breaks if the process is long, and stick to them too.
7. Explain the process and make it clear that the interview is two-way.
8. Allow (even encourage) the candidate to stim during the interview. This has the advantage of being reassuring for them but also is an important signal that you understand their needs.
9. Provide a quiet room where candidates can decompress in private. Don’t make the candidates engage in social interaction with one another.
10. Be aware that autistic people may seek to comply with whatever it is you seem to be wanting.

For autistic candidates, the traditional interview process is often deeply flawed. The importance given to social cues and quick thinking under pressure works against autistic people. A more inclusive and effective approach would be to shift toward practical, real-world assessments that allow candidates to demonstrate their abilities in a supportive environment. To be realistic, though, the bets we can hope for is small but meaningful adjustments, such as: clearer communication, sensory accommodations, and a genuine commitment to neurodiversity. Where such changes happen, there are small victories which will eventually combine to change the culture as a whole. 

Retirement

Autistic people tend to dislike change, especially fundamental changes to lifestyle and routines, so approaching retirement was something that I viewed with considerable trepidation. I gave the university six months’ notice (rather than the usual three) partly to help them, but also to help me prepare psychologically. It is now a month since my retirement date, so I thought I’d pause to reflect a little from an autistic perspective.

The most dramatic change, unsurprisingly, is to my routines. Many of these were created over time to enable me to get to the end of the day with less drain on energy, or ‘spoons’. So, things like the breakfast routine, with its sequencing of marmalade and coffee and precise timings, existed to prevent me having to think about what I was doing. This gave me more headspace to cope with the anxiety that always built up before a day’s work. The coping strategy involved visualising all the situations I would be going into and scripting likely conversations and meetings. None of that is necessary now, so the whole routine has collapsed. Is this a good thing? I’m not sure, but my wife tells me I seem more relaxed, so perhaps it is.

Certain routines, like having lunch at 1.00 pm, have not changed, so the days are not totally without form and structure. But I can sense myself seeking to create new routines to fill the void. Working in my lovely garden office is helping with this. And I do still have quite a few projects and commitments going on, so they help to provide structure. I think the sense of empty space will really kick in after Christmas when those are over, but probably I’ll find new ones. I have started to get more involved in house and garden activities, and to go to the gym. Perhaps those will also add some routines once I get into the habit. 

The most positive thing is that I’ve now got more time to work on trying to help others. So, I am working with the Leicester, Leicestershire and Rutland NHS Autism Partnership on projects like Autism Space and the Supported Employment Service and I have joined their Board. I am working with All-In Leicester to review venues and we are currently consulting with the people who are redeveloping Leicester Railway Station.  I am also working with ArtReach on a research project funded by the Arts Council entitled ‘​​Developing Disabled Leadership in the Midlands’. 

These kinds of projects, combined with ongoing relationships with my former university and quite possibly another university means that I am transitioning into a retired life, rather than abruptly ceasing work altogether. In fact, retirement to me means just doing work on a different basis, one which resembles somewhat being on the dole back in the 1980s, when I didn’t have much money but did have a great deal of freedom. I can remember from those times, though, how much I struggled with the lack of structure.

One final thing is that my anxiety and stress levels have reduced considerably, thanks to being much more in control of my environment. No longer having a daily expectation of traveling by bus or train into an ever-changing workplace is a great relief. As Luke Beardon famously said: autism + environment = outcome. Here I have an environment that is exactly how I want it to be, so that makes life much more pleasurable. 

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.

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.

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*  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.