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.