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.

The 'Neurotribes' conference, Sound Festival Scotland.

Yesterday I attended the 'Neurotribes' conference that was part of the Sound Festival in Scotland. It was really great to see an event like this and it was a pretty interesting and eventful day. Full credit to Ben Lunn, Drake Music Scotland and the Sound Festival for staging such an inclusive conference (complete with BSL and live captions). Great efforts were made to enable people to take part and to consider every viewpoint. The day included a concert of music by the neurodivergent composers Joe Stollery, Ben Teague, Rylan Gleave, Ben Lunn, Siobhan Dyson and Jason Hodgson, as well as spoken presentations by each of them. There was a special tribute to the late Lucy Hale in the form of a performance of her piece ‘Snap and Sustain’.

It struck me that this was the first time since my diagnosis three years ago that I have identified as autistic in such a public setting. Consequently, once I started to speak in the final discussion I became surprisingly nervous. There was that familiar “imposter syndrome” feeling that most late-diagnosed autistic people know. Also, I had some things to say that were rooted in personal experience, which always makes me nervous. I’m more used to speaking in academic conferences where nobody is much interested in personal statements.

The day began with a performance, or more accurately a screening, of Siobhan Dyson’s audiovisual piece ‘Listen Carefully’. The great value of this work was its instructive effects for non-autistic, or neurotypical, people. It emerged in the discussion afterwards that they had been strongly affected by this powerful depiction of the way the world is experienced by autistic people. The National Autistic Society and others have tried over the years to convey this in short films or animations, but apparently not with the same force that was achieved by Siobhan Dyson.

It also emerged that several of the autistic people had found the piece overwhelming, as indeed did I. Trigger warnings had been issued, but I foolishly ignored them and tuned in, thinking: it can’t be all that bad. It turned out that such strong depictions of my lived experience are intolerable for me! I lasted under a minute before I was obliged to bail out, on the edge of a shutdown and with my hearing disturbed in the kind of way that normally only happens when I visit the audiologist. I played chess for a while to restore my equilibrium, but the effects lasted all day to some extent. Some friends were concerned about me, which was very considerate of them, and Siobhan herself was clearly very worried that she had upset other autistic people. However, I would argue that it was much more important that the piece was heard by those who needed to hear it. My takeaway lesson is: heed trigger warnings!

The concert contained some very enjoyable and well written music. Because of my hearing, I cannot listen to music for very long, so I recorded the whole thing and listened to it in batches afterwards. One comment I would make to the organisers: it might have been a good idea to adapt to the online medium a bit more and edit each piece separately to make it available online for asynchronous listening. The format of a ‘concert’ didn’t work so well over the web. But the performances were clearly excellent.

The stated objective of the conference was to “bring together promoters, ensembles and composers on the autism spectrum” in order to “discuss the challenges facing composers on the spectrum and explore how to enable greater inclusion and facilitate effective and supportive working relationships”. This really came to the fore during the final discussion, when representatives from several music organisations, performance groups and publishers met with the autistic participants. 

My (quite challenging) contribution was to ask why it is that such organisations always seem to position themselves as the arbiters of what is worthy by having a competitive selection process judged by a panel whenever they call for new works? Could there not be a randomised selection process rather than this constant 'panning for gold' (as my friend Ashok Mistry calls it)? Can we not trust audiences and participants to judge what is good or valuable?

This caused a lot of discussion. If I understood the comments correctly, the neurodivergent people mostly agreed with what I said and felt it resonated strongly. The representatives of the organisations, possibly feeling attacked (which was not my intention) kicked back somewhat, explaining that they are always trying to be inclusive, but that they feel they must support certain individuals or groups, because they have a duty to the artists and have to meet certain requirements. But they also admitted the discussion made them feel uncomfortable. As someone remarked: “unsuccessful applicants may wonder what they have done wrong”. 

Speaking from personal experience: that is exactly the problem. I recently wrote a blog post about “getting it wrong” which argued that we often judge ourselves by neurotypical criteria, leading to a diminished sense of self-worth. For an autistic person, who has spent a lifetime trying to understand unwritten rules in an effort to fit into a society which makes no sense, it can be devastating, even traumatising, to be rejected in a way that seems to involve a set of unwritten rules. 

Of course, neurotypical people also feel fear of failure, despondency at rejection, and so on. But this commonality should not lead to the classic “we are all a little bit autistic” argument. The autistic experience is completely different and may range from a hyposensitivity in which a rejection is greeted with complete indifference, to hypersensitivity in which it is traumatising. Either way, it chimes with a lifetime of trying to fit into a world which is incomprehensible. 

Sometimes, success can be worse than failure, because it is achieved at the expense of others. Autistic people, contrary to received wisdom, are often hyper-empathetic. We think (care) more about the people who were not selected than about our own success. When you get a commission, everybody starts telling you you are marvellous, but all you can think is: why? And once the project is over, everybody stops telling you that, and your response is also: why? In other words, the selection process operates in exactly the same way as day-to-day society. Autistics are constantly trying to operate in a world which is apparently configured to make us fail, and in which any success arises from arbitrary social conventions. Music commissioning mimics that system with its Darwinian selection processes. 

If a random selection process would be too radical, then perhaps a process which is not based on perceived quality, but rather on some kind of clear mechanism, might work. Good and transparent feedback is essential, but is so often lacking. I take the optimistic view that all composers create work that has something good and interesting about it. But, we wouldn’t know that unless we get to hear it! If we assume that there is always insufficient time and resources to hear everything, then some kind of equitable system is the most desirable compromise.

So, all in all, this was a successful, stimulating, and sometimes challenging conference which left me with plenty to think about. Despite my nerves and the occasional difficult moments, I’m glad I went and it was very nice to feel that I am still part of the contemporary music scene to some extent. It would be good to see similar events organised elsewhere. There is a lot of interest in engaging with neurodivergent people at the moment, which is terrific, but the process is in its infancy and there is much more to learn about how this might best be done.

Medical perceptions

I’ve encountered medical people both as a patient and professionally as colleagues. By ‘medical people’, I mean doctors and nurses, but also medical scientists and consultants. I’ve worked with surgeons and clinicians in research contexts, but have also received care and treatment from GPs and specialists. It’s interesting to see to what extent the so-called ‘medical model’ really exists in medicine.

The medical model treats symptoms as signs of an inner physical disorder. If the symptoms are connected, then this can add up to a syndrome. In disability, this is a ‘problem’ that affects the individual, and only the individual. In other words, any disabling effects are a consequence of the disability itself, rather than any external circumstances.

The social model stands that on its head and proposes that society disables people by designing the world to suit a majority who are not themselves disabled. It should be the responsibility of society, rather than the individual disabled person, to reduce or remove barriers.

Autistic people, myself included, tend to favour the social model for a number of reasons. It resonates very well with our lived experience amongst non-autistic people who do not seem to understand us and who we in turn apparently do not understand. It situates the model outside 'disability', which can be a problematic term because it describes well the co-morbidities that often accompany autism, but not necessarily the autism itself. It is more accommodating of hidden disabilities. And so on.

My experiences of talking to medical people vary greatly and range across both the medical and social models. My GP, for example, is very accepting of my diagnosis and aware of the issues that arise from the social model. In fact, the very existence of this blog is at least partly down to her encouragement. She says that I have some kind of prominent position and should therefore become what she calls a “champion of autism”. 

Others have been less sympathetic and in some cases quite dismissive of both the social model and my diagnosis. These conversations have been challenging but thought-provoking. The essence of the argument seems to be that the very idea of an autism diagnosis is meaningless without a set of recognisable physical symptoms. I like to compare my diagnosis of Ménière’s Disease (which is not really a disease, more a collection of symptoms) with the autism identification. In the former, the consultant was able to observe and measure a set of symptoms, most notably vertigo and severe hearing loss. The latter was a judgment call by psychologists based on interviews and other documentation. 

To that extent I would agree with the medical model, inasmuch as the very idea of ‘diagnosis’ seems misapplied. I discussed this in previous posts. But of course this does not deny the social model, which is very real. And in the end my own knowledge of autism as lived experience confirms its reality. I don’t just feel autistic, I am autistic. The difference is an actual difference. The medical model does not go far enough if it relies solely on observable and measurable symptoms. 

From a personal point of view, some of the discussions I have had have been hard to take. Sometimes, the medical colleagues are extremely dismissive, both of my diagnosis and of the psychologists who made the diagnosis. My evident ability to function well in an academic context is confusing. They know me as a Professor, and therefore high-ranking within academia. They compare that with their knowledge of autistic people who exhibit the kinds of ‘symptoms’ they would recognise: perhaps non-verbal or showing other obvious signs of ‘impairment’. One colleague tried to undermine me by declaring that “we are all human” and therefore that there can be no such thing as neurological difference. 

At such times, I struggle to remain balanced and rational. This looks to me very much like a failure of the medical model and confirmation of the social model. It makes me feel disbelieved and attacked, coming as it does from an authoritative source. At the same time, I think this is not quite as straightforward as it might appear. In some respects, the medical/social opposition is itself an illusion. If I consider my tinnitus, for example, the doctors will always recognise its existence and debilitating effects, even though there is actually no way to measure it. And some organisations, such as the British Tinnitus Association, go well beyond a purely medical understanding of the condition.

The issue seems to be autism itself, whose recent history is, I think, quite problematic for both society and the medical profession. To some extent, it is a construct, resulting from a set of understandings that have evolved over several decades, as we know. As such, it is itself a socially-derived condition whose very existence is a challenge to medicine. Be that as it may, I can only speak from my own experience as an autistic individual. I know that it is real and I am amazed by how accurately the psychologists are able to pinpoint and describe my lived experience. Also, I relate to other autistic people in ways which I do not to the rest of the population. 

Disclosure

The question of whether and how to disclose your autism is one of the most challenging things that follows a diagnosis.

Various issues play on one's mind, such as:

• Will it change the way people perceive me?
• Will it change the way I perceive people?
• What difference does it make?

The answers to these, in order, are: a) yes, b) yes, and c) a great difference!

At first, I was very cautious about disclosing. I thought it was best only to talk to a few friends or family members. But it soon became obvious that I would have to disclose at work too, both because I now recognised certain adjustments that could be made to improve my work environment, and because I was being encouraged (by my GP and others) to 'champion' autism.

My general policy is to disclose only when I am convinced it is a good idea. I don't go around introducing myself to people as autistic. But the number of occasions on which it seems to be a good idea is steadily increasing.

I often have to contend with a disbelieving reaction. This is very tiring. More than one person has said, incredulously, "but you are very high-functioning!" I usually reply: "but you've never seen trying to go through an airport - I'm not at all high-functioning then". The high/low-functioning distinction really makes no sense. We can function well in some situations but not at all in others. Usually it is the environment that creates the problem. Why is that so hard to understand?

I'm afraid I have seen some people's view of me change. Often they remain politely interested on the surface, but back away. I guess either they don't believe it and would rather not say so to my face, or they do believe it and are suddenly wary.

At the same time, my perception of others has changed too, because I now understand the way in which I structure relationships. What I fondly imagined was a natural, organic relationship turns out (through not fault of theirs) to have been much more driven by my autistic needs than I realised.

The best reactions to my disclosure have come from some close friends and family, and from my line manager and certain colleagues at the university. I am very pleased to be able to say that, because I often hear people complain about how disclosure at work (especially in academia) can go badly. My line manager was great: very matter of fact and immediately offered to make reasonable adjustments that were furthermore quickly implemented. Result: a much more comfortable work environment for me!

The worst reactions I have received were from medical colleagues (not my GP) and acquaintances, and I will devote a separate blog post to those. Suffice to say that the medical model/social model distinction is very real, and quite shocking.

For me, then, disclosure has been a mixed blessing, but this blog is evidence that I am now committed to that path. I feel it is a duty for people like me to disclose. As Chris Packham has demonstrated it is important for academics, especially senior academics, to address their autism in public to some extent. Many others stand to benefit from people like me speaking out, so that is what I will do.