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.

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. 

How can neurodivergent artists market themselves?

 "How can neurodivergent artists market themselves"?

This was a question I was asked during a webinar entitled ‘Neurodivergent artists and practitioners discuss how they work with digital’ last week. The Space, the BBC’s digital agency, had invited me to speak because of my recent commission for ‘Spectrum Sounds’ which will be broadcast later in the year.

Autism does present real challenges in this respect and I found myself giving a fairly downbeat answer. Reflecting on my compositional life, I realised that many of my contemporaries have carved out pretty successful careers, winning frequent commissions, prizes, recording and publishing contracts, broadcasts, and generally being talked about and listened to. My compositional career has been less obviously successful by comparison.

Why might that be? One possibility is that my music is not as good as theirs, but I would counter that argument with the evidence of all the fantastic reviews and comments I get whenever something is performed or broadcast. The most common epithet used to describe my music is “beautiful”, which can’t be too bad, right? I mean no disrespect to my friends and fellow composers now in their 60s when I say that my music stands alongside theirs perfectly well.

No, I think the real problem has been my almost pathological inability to “network” and “self-promote”. Funnily enough, I wrote about the importance of this in my book ‘The Digital Musician’, but I realise that I am lousy at practising what I preach, at least in this department. I’ve never set much store by fame, nor have I ever expected to make any significant money from composing, but I have wanted to communicate and express myself through music. 

I remember when Island Symphony premiered in 1995, a senior figure in the musical world declared it was “brilliant” and “a very important composition”. Then he said: “now what you have to do is to convince everyone else of its importance”. At that point, I realised that I had no hope of doing so. I simply lack the social and networking skills for that kind of endeavour. Island Symphony has a small and enthusiastic fan club, but it remains largely unknown, I think.

This is a facet of autism, I’m afraid. The whole system of marketing and self-promotion depends on one’s ability to get out there and talk to the people that matter. To be a presence on the scene. To indulge in the kind of back-slapping and mutual praise that makes the wheels turn. Performers rely on composers having reputations that will advance their own careers. Composers rely on commissions from organisations that can invest in them and expect a worthwhile return. Record companies and publishing houses are completely driven by marketing, of course. And then there are competitions, which form the life-blood of contemporary music these days. Panels of respected judges select works from a pool. What guides their choices? Some notions of musical excellence, no doubt, but these are surely shaped in no small measure by the reputations that precede people. Even judged anonymously, one can sense a zeitgeist in contemporary music that shapes opinion. If you do not make your presence felt, then you are not part of that zeitgeist. How do you make your presence felt? Through social interaction.

What can autistic people do about this? It requires constant presence. You have to be seen and mingling, so that when opportunities arise people think of you. You have to be visible, both online and offline, on the arts scene. How can you do this if social interaction is a challenge? I honestly don’t know. Some people say: get an agent. But that involves having constant and ongoing social interactions with the agent. Not to mention finding one in the first place. No doubt if you can get the right agent it will be great. But what happens if you get the wrong one? 

I do have something positive to say, though. Times are changing. There seems to be a new willingness to listen or to try to understand or include neurodivergent people. The Arts Council has woken up to this, but I also think wider society is engaging too. When I was young, there were very few people who identified as autistic. Now there are at least 700,000 in the UK. Many of those are working in music and the arts. It is hard to ignore so many people. 

I won the commission for Spectrum Sounds by entering a competition. That is only the third time in my life that I have submitted an application to a call like that. I would not have done so, were it not for some kind people at the Attenborough Arts Centre who pushed me into it. Of course, I am pleased to have won the commission (although still rather anxious about those who applied and were not successful). It has brought me back to composing in ways which are very rewarding for me, following my hearing loss. 

But I wonder what would have happened if the BBC, for example, had taken more of an interest in my work all along. I received several BBC commissions back in the 1980/1990s, but then they fell away. Because of my inability to network, I have never attempted to engage in any of the contemporary music festivals that run annually. Nor have I tried to get involved with performers unless they specifically asked me for something, or I could pay them from some commission money. Once I have a commission, I do hire people and pay well, but the commissions are few and far between. I’ve never had any idea how to approach a publishing house or a record company.

What’s great now is to see some young autistic composers breaking through and supporting one another. I saw it at the Sound Festival in Aberdeen recently, and I am seeing it around the place more and more. I wish them all the best and look forward to seeing the fruits of this societal shift that is going on. The increase in diversity in contemporary music can only be a good thing, in my opinion, and is long overdue.

Designing autistic spaces

One thing that my identification/diagnosis has revealed to me is my mostly unwitting role in designing autistic (or, more precisely, autism-friendly) spaces.

During my academic career, I have often been in the fortunate position of being asked to create spaces. On every occasion, I have been the Director of a Centre or an Institute, or the holder of a large capital grant that has given me the right to dictate how the space should be designed. To give some examples, I have built: two recording studios, a multidisciplinary research lab, a performing arts space, a usability lab, and an enormous institute full of digital technology and experimental equipment. Furthermore, I have frequently been asked to advise on the construction and design of spaces outside the university. Back in 2009, for example, I designed a digital gallery/workspace in a local arts centre, and I have recently been consulted on the design of a laboratory in a science park. 

Now, I should stress that I have no qualifications for building and designing spaces. However, I do have some quite strong opinions about how it should be done and since I was “in charge” in these situations, I took some key decisions. What I now realise is that every one of those decisions arose directly from my autism. Of course, I had no idea at the time what was going on!

In my life, I have always navigated the world by trying to find autism-friendly spaces. So, for example, on arriving in an airport, the first thing I would do is to seek out the multi-faith room. This is generally a quiet space with low-level lighting and low stimulus colours, often wood. It would have a transient population, so there was no real danger of unwanted social interaction (unlike churches, where there is always someone who wants to chat). As a child, at school, I created a “war gaming club”, which had only two members. The reason was that I could then take occupancy of a basement room that was otherwise unused. After a time, it became apparent to the other member that this was really about something other than “war gaming”, so he left. I had a silent room all to myself. There are many more such examples. 

When designing spaces in universities, or elsewhere, my main priority was to control the environment and especially the sound and lighting. All my spaces had the kind of sound-proofing that would be used in noisy industrial spaces. In other words, they were as close to silent as I could get, whether they were recording spaces or not. The colours would be simple - a white, or a pale blue - and uniform. This would extend to the ceiling and even the floor, but with differences in shade or texture making it clear where the boundaries were. This is important for me, because my proprioception requires location points to be able to function. Lighting would be LED and not fluorescent. As with many autistic people, I can see the flickering of fluorescent tubes and find it very disturbing. There would be no irregular patterns, no asymmetrical features, no irrelevant “features”. The spaces needed to be predictable and functionally elegant. They also had to be flexible and have technology built in, including silent air conditioning to remove any smells (again, my autism means that I have always found certain smells intolerable) and moderate the environment to a steady temperature. 

Now, when I look at the BBC’s Sensory Environment Checklist https://bbc.github.io/uxd-cognitive/ I see that these spaces of mine all conformed to those standards. I used them for my personal wellbeing, but what was interesting was how much neurotypical people also liked them. It is often that way: the environmental changes that suit autistic people also suit neurotypicals. Luke Beardon wrote: autism + environment = outcome. I now understand that I have somehow been aware of that formula all my life. 

Most recently, a local media/arts centre started talking to me about extending a space that I had designed back in 2009. This is a digital gallery. It is set off from the main area by a corridor, so many people do not go into it. I created a beautiful autism-friendly environment in complete contrast to the bright, buzzy café nearby. It has a floating floor, silent aircon, LED lights, and buff walls that can easily be repainted. Over the years it has hosted many superb exhibitions and installations and the directors of the centre obviously assumed that its purpose was solely digital art. Little did they, or I, realise that it is also a space for autistic people to retreat to when they arrive at the centre. Interestingly, they are now asking my advice once again about how to extend it. This time they are talking to me not because of my academic position or expertise in digital arts so much as my identity as an autistic man. I’ve been very frank with them about the purpose of the space, how it could attract a new autistic audience, what is required of the extension to make its dual purpose clear. We’ll see what actually emerges, but it is a sign of how far we have come that such things are now being openly discussed and in a most positive way.

Access Rider

 I have recently been asked to complete an Access Rider. This is an easy way to communicate your needs to colleagues, employers or organisations, especially in the arts. It was a very interesting exercise. I thought I would share mine with the wider community, in case people are preparing their own and are looking for examples. There are many other examples, along with a template and instructions here https://weareunlimited.org.uk/creating-your-own-access-rider/

Name

 

Andrew Hugill

 

Intro Paragraph

I am a composer, musicologist, and author. I'm a Professor at the University of Leicester, where I lead the Creative Computing programme. I frequently speak at international conferences and give public lectures.

 

I have three invisible disabilities which affect my work and life: 

1. autism (includes social and sensory issues, but no learning difficulties);

2. severe hearing loss (includes tinnitus and diplacusis);

3. balance disorder (Ménière's Disease).

 

I often find a typical concert or conference situation overwhelming. Foyers and registration areas, communal break-out spaces, anywhere with strip lighting, unclear signage, background music, unstructured social interactions, reflective surfaces, lots of information, and general hustle and bustle, can cause me to shut down or have a vertigo attack.

 

My Access Needs

I have divided my access needs into Essential and Desirable. Essential needs are those that are completely necessary for me to do anything at all. Desirable are those which I can manage without but which could have negative consequences for my spoons. See the supporting information for an explanation of spoon theory.

 

Essential

a.   I do not drive, but will travel on public transport.

b.   My dietary requirements are: gluten-free, low salt, no caffeine.

c.    I require disability support in airports.

d.   I cannot balance in the dark, so some kind of low-level lighting is always necessary.

e.   I need a dimly lit quiet space to retreat to at any venue (doesn't need to be anything special).

f.     I need occasional short breaks to avoid loss of spoons, and I cannot listen to music for long.

g.   Speakers at conferences and events must use microphones, or live captioning.

h.   I must avoid fluorescent lighting, irregular patterns on walls and floors, and spaces with too much information/bustle.

i.      I must avoid floral perfumes, air fresheners, and other artificial smells.

j.     I need captions on videos and in live conferencing.

k.    I follow routines, so need to be able to take lunch at 13.00, for example.

 

Desirable

a.   I prefer natural light and spaces with clear edges/corners.

b.   Please avoid shining lights directly into my eyes, especially when I'm speaking from a podium.

c.    I prefer to see in advance pictures or videos of the places I am going, to reduce anxiety.

d.   I prefer low-arousal room colours (see autism-friendly environments below).

e.   I like to have advance warning of any fire alarms or other unpredictable and loud events.

f.     I prefer there to be no applause (but I can quickly put on noise-cancelling headphones to mitigate this if necessary).

g.   I lip-read, so prefer to be able to see people's faces when videoconferencing.

h.   Free-flowing "networking" events are very difficult for me. I prefer one-to-one or private contact.

 

In general, the social model of disability applies to me very well. The environment disables me more often than my conditions. For that reason, my access needs focus a lot on environmental factors.

 

Emergency Information

In any emergency, please contact [redacted].

In the case of a vertigo attack, please do NOT call an ambulance. Provide a quiet, dimly lit place, with water and a receptacle for vomit, then leave me alone. 

In the case of a shutdown, please communicate simply and clearly. Again, find a quiet, dimly lit place and leave me to recover. 

Supporting Information

 

An article on Spoon Theory: 

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

An explanation of the social model of disability:

https://weareunlimited.org.uk/resource/the-social-model-of-disability/

 

A description of how to create an autism-friendly environment

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