The Autism Spectrum has not collapsed.

Dame Professor Emeritus Uta Frith has recently suggested in an article in the Times Education Supplement that autism should no longer be understood as a spectrum. In her view the category has expanded so far that it has “widened to the point of collapse”.

I think she is wrong. However, I am not going to attempt a line-by-line refutation of her argument. Several other writers have already done that very effectively. I just want to offer some more situated insights.

Speaking from the inside, the expansion makes perfect sense.

I say that both as an autistic person (diagnosed or, as I prefer, “professionally identified” as such by psychologists) and as someone who has spent much of his working life thinking about how different minds organise perception, attention and creativity.

The idea that autism is a spectrum is not an abstract theory to me. It simply and effectively describes the sheer range and variety of autistic people I have known, worked with and read over many years.

For most of the twentieth century autism was defined quite narrowly. It was primarily associated with children who had very visible developmental differences and who were usually diagnosed early in life. Many other people who would now be recognised as autistic simply passed through life under different descriptions: shy, eccentric, obsessive, socially awkward, gifted, difficult. Some struggled quietly, while others built lives that accommodated their differences in various ways.

What has changed in the past two decades is that these experiences have begun to coalesce into a shared language. Adults have started recognising themselves in descriptions of autism. Women who were overlooked in childhood have begun receiving diagnoses later in life. Autistic people themselves have increasingly written about their experiences in ways that were largely absent from earlier research.

To some observers this widening of recognition looks like diagnostic inflation. I believe instead that we have simply become better at recognising autism.

Part of the tension here is historical. Much of modern autism research developed around a set of cognitive theories that attempted to explain autistic behaviour in terms of deficits. The most influential of these was the idea that autistic people struggle with “Theory of Mind”: the ability to infer other people’s thoughts and intentions. This idea, which was partly developed by Uta Frith herself, has been enormously influential and helped shape research agendas for decades. But it has also caused great harm to autistic people.

Once autism is framed primarily as a deficit in understanding other minds, it becomes easy to make assumptions that autistic people lack empathy, lack imagination, or lack insight into their own experience. Those assumptions have travelled far beyond academic psychology to become part of the cultural story about autism.

What has changed in recent years is the arrival of autistic writers, researchers and advocates into a space that was previously populated by non-autistic psychologists. Their presence alone contradicts the idea that autistic people lack a theory of mind.

These autistic writers and researchers have increasingly challenged the notion that social differences can be explained simply as a one-sided deficit. Damian Milton’s “double empathy problem”, for example, suggests that misunderstandings between autistic and non-autistic people arise from differences in perspective on both sides. Communication difficulties may reflect a mismatch between neurotypes rather than a failure on one side alone.

I should add a personal observation here, although it is not a scientific one. In my own experience I often find that I “click” more quickly and more comfortably with autistic people who have significant learning disabilities and little or no spoken language than I do with many neurotypical people. Communication takes a different form, of course, but the sense of mutual understanding can be surprisingly immediate. Experiences like this make it difficult for me to see autism as a collection of unrelated conditions. There is often a recognisable affinity across the spectrum itself. If the spectrum had truly “collapsed”, as Frith suggests, that affinity would be much harder to explain.

The growing diversity of people identifying as autistic is not evidence that the concept has broken down. It reflects the fact that autism was never a single uniform condition to begin with. Even among those diagnosed in early childhood there has always been enormous variation: in language, cognition, sensory experience, interests and ways of engaging with other people. The word “spectrum” was introduced precisely to capture that diversity.

To be clear, I am not especially attached to the term “spectrum” itself. It is often misunderstood as a simple linear scale running from “mild” to “severe”, which is not a very good description of autistic variation at all. A more accurate image might be something closer to a circle, or perhaps a landscape, in which different traits appear in different combinations. Two autistic people may have very little in common on the surface and yet still recognise something of themselves in each other.

It is also not possible to infer very much about someone’s intellectual abilities simply by looking at them. Some autistic people who speak little or not at all have extremely rich inner lives. Equally, people who appear highly articulate, successful and independent may still find themselves overwhelmed in particular situations and, at those moments, require a great deal of support.

My disagreement with Frith is therefore not really about terminology. It is about the argument that the growing diversity of autistic people somehow invalidates the concept altogether. In my view the opposite is closer to the truth.

What has expanded is not the category of autism, but our recognition of how many different forms it can take. My own experience illustrates the point. Once I had the diagnosis, many aspects of my own history suddenly became easier to understand.

Much of my music is built from rule systems, permutations and constraint-based processes derived from areas of focus that are often non-musical. This is a way of working that many autistic people immediately recognise. What I have described as a “stubborn literalism” often gives rise to abrupt formal changes in focus, rather than smooth and continuous transitions.

Only since my diagnosis did I begin to recognise how closely these habits of thought aligned with descriptions of autistic cognition. Ideas such as monotropism, intense focus or Flow and pattern-based reasoning are highly appropriate. The autism was not new. What was new was finally having a name for it.

When I speak with other autistic people, I often hear similar descriptions of attention and perception: a pleasure in pattern, an attraction to detail, an instinct to explore structures very thoroughly. These ways of thinking can sometimes create friction in social environments that rely heavily on implicit expectations and rapid intuitive signalling. But they can also be powerful creative resources.

None of this means that autism brings no difficulties. For many people it involves real challenges, and some autistic individuals require substantial support. But it also involves distinctive patterns of attention and perception that are part of the richness of human cognitive diversity.

From that perspective, the claim that the autism spectrum has “collapsed” looks less like a discovery than a reaction to a changing conversation.

For many years autism research was shaped almost entirely by clinicians and psychologists observing autistic people from the outside. Today autistic people themselves are participating in the discussion about what autism means, as writers, artists, scholars and researchers. What Frith describes as the “collapse” of the spectrum looks rather different from the inside. What has expanded is not autism itself, but our ability to recognise it.

That shift inevitably unsettles some older frameworks.

Autism may not be a straight line running from “mild” to “severe”. It may be closer to the circle or landscape I described earlier: a space in which different patterns of perception, attention and communication appear in many different combinations.

The autism spectrum has not collapsed: it is the people describing it who have changed.

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.

Mind v. Body: Autism v. Ménière's

Back in 2009, I was diagnosed with Ménière’s Disease. I’d been experiencing the classic symptoms for a couple of years before that: powerful rotational vertigo; tinnitus; hearing loss; aural fullness. Ménière’s is notoriously difficult to diagnose accurately, but eventually it became clear that my symptoms were very typical and an expert ENT consultant was able to make the diagnosis and then prescribe treatments. I ended up having gentamicin injections, a kind of chemical labyrinthectomy, which were pretty effective at stopping the vertigo. My hearing loss is severe, and the tinnitus remains, and I still have balance problems. Needless to say, any Ménière’s patient also suffers from anxiety, usually brought on by the unpredictability of the condition.

The thing about Ménière’s is that it is a measurable set of physical symptoms. Standard audiometric tests can produce diagrammatic representations of the hearing loss. Balance tests and observations of nystagmus (rapid eye movements) can establish beyond doubt the presence of a vestibular disorder. Even tinnitus can be measured to some extent, based on clinical interviews. This is a set of symptoms that clearly exist in the body, originating in the inner ear but then with consequences for the whole vestibular and hearing system. 

However, many of the symptoms of Ménière’s, and indeed vestibular migraine, also overlap with autistic characteristics. Sensory issues, such as sensitivity to sound or bright lights or certain kinds of patterns, are typical of both. Anxiety is common in both. And a vertigo attack greatly resembles a meltdown/shutdown. The way of dealing with these is pretty much the same in both cases: leave the person alone in a low-stimulus environment with some pre-agreed objects and an opportunity to sleep it off. What happens afterwards is also similar: brain fog, shame or embarrassment, sometimes self-destructive thoughts.

It has been surprising to me how many autistic people I know also have a Ménière’s diagnosis. There are famous examples too, of whom Chris Packham is the most notable. I have found myself wondering a lot over the past couple of years to what extent these are connected. An ENT consultant I know speculates that migraineurs (people who have migraines) are an advanced form of human being whose extra sensitivities were a decisive advantage during the evolutionary phase of homo sapiens, but are now a disadvantage in the modern world. This sounds a lot like theories of autism as an advanced form of brain evolution. They may or may not be true, but the theoretical parallels are remarkable.

The question in my mind is: where is the boundary between my Ménière’s and my autism? This seems to be a body versus mind question, because Ménière’s is physical with consequences for the mind, whereas autism is neurological with consequences for the body. An autism diagnosis is easy to doubt, as we all know, because the symptomatic outcomes do not obviously point to an underlying physical reality (this is presumably what genetics research is trying to investigate). Yet it is quite clear to me that certain aspects of myself, especially those that have been in evidence since early childhood, cannot be explained by anything other than autism. But there is a grey area of overlap in which it is less clear what might be autism and what might be Ménière’s.

Let’s consider a concrete example. Several years ago, my wife and I went on holiday to the Arctic Circle, flying into Tromsø one dark, cold night to board a ship sailing down the Norwegian coast. This involved going through an airport, one of the most challenging environments for me as an autistic person. This was a few years before my autism diagnosis though. My wife supported me throughout, knowing the difficulties I usually have in airports.

While we were waiting at the boarding gate, I had an attack. I started sweating, the vertigo came on, and I staggered to the toilet expecting to vomit. Nothing happened though, and after a time my wife called me to say that the plane was leaving and we needed to decide whether to board it or not. I still felt terrible, but I decided to press on and staggered down the boarding channel to my seat, where I took out the sick bag and sat throughout the flight with my head in my hands. After an hour, though, I felt much better and we arrived in Tromsø just fine. I had some lingering brain fog but was otherwise able to function well enough.

Looking back on this incident (and I’ve had so many like that over the years) I question what was really going on? Perhaps my lunch had been too salty, but I doubt it. Was this in fact nothing to do with Ménière’s, but rather a shutdown or a panic attack brought on by my autistic response to the airport environment? That is certainly the way I would understand it now. The “vertigo” was qualitatively different to attacks I had had years before. The spinning was not so pronounced and was more a general sense of loss of proprioception. My hearing did not change either, which used to happen during a Ménière’s attack. No, this seems more like the kind of shutdown I used to experience long before the Ménière’s diagnosis. On this occasion, I could only understand it in terms of Ménière’s, but now I think that autism was probably a more likely cause.

Or was it, in fact, a combination of the two? Was autism creating the shutdown, but the body’s response was that of a migraineur or a Ménière’s sufferer? Or was it an overload of anxiety, coming from my response to the airport but connecting with autism somehow by building on anxieties around travel, change and the unknown? My wife was with me, which was great for my support, but I also felt responsible for her too. I wanted to make sure she was happy and having a good time. Perhaps the extra responsibility contributed to the psychological pressure?

So, how best to investigate whether there is any overlap between Ménière’s and autism? What is needed here is some transdisciplinary research. To achieve a more holistic understanding of the possible overlaps and relationships between these conditions requires researchers who are capable of overcoming disciplinary limits. I myself do not have the necessary expertise in either field, but I am sure there are people who could explore this further. The conclusion may be that there is no connection beyond symptomatic similarities. But even the process of investigation could have value in challenging the mind/body distinction that pervades medical and psychological research.

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.

"Getting it wrong"

In this very interesting interview on @WorldAutistic's podcast, Luke Beardon makes the following statement:

"My view is: if you are autistic and you don't know it, then you judge yourself against the wrong set of criteria and you end up with very low self-esteem and all sorts of problems with society, because you blame yourself for not understanding situations or maybe "getting it wrong", when actually you're not getting it wrong at all - you're just filtering information in an autistic way without realising it."

This resonated so strongly with me and describes my entire life. It probably explains why I was unable to form a lasting relationship until I was in my late thirties. It still applies, even though I understand what is going on. I just cannot get past this autistic filtering of information. It is the way I am.

In the past, it would cause me distress as I tried to figure out what I had done wrong. My history is strewn with miscommunications and misfires, usually in supposedly 'normal' and 'relaxed' social situations. Something was always wrong, but I could never understand what it was and ended up blaming myself. Structured interactions, such as professional situations in universities, tended to be more satisfactory, because I (mostly) understood the social conventions.

Post-identification, this still goes on. I continue to blame myself for what I believe to be my mistakes, because I do not understand the social rules. Fortunately, my wife can put me straight most of the time, but it causes me anxiety just the same. However, the self-knowledge that has come from the diagnosis has led me to be more accepting of this state of affairs. 

Which leads on to the wider question: whether what I have done was ever in fact "wrong" at all. This is implied in Luke's statement. The argument goes that it is society's problem that it cannot accept that I am the way that I am. I have certainly judged myself against the wrong set of criteria in that case, and this is something I am seeking to change. What makes it so hard is the accumulation of thousands of mental scars over a lifetime of errors, both small and large, all of which I remember in great detail, right back to childhood. Before my diagnosis, these would puncture my thinking constantly and cause me to shudder. Post diagnosis they still occur, but now I am more forgiving of myself. 

There is an interesting philosophical debate to be had about the nature of transgression. The things that are “wrong’ may not be wrong in an objective sense, and certainly not in terms of an autistic person's own nature, but may be socially constructed as wrong in a society engineered for, and by, neurotypicals. To what extent are they really wrong? Who makes those judgments, and why?

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. 

Early Childhood

One of the first things that the psychologists ask for when you request a diagnosis is an interview with your parents. In my case that was impossible. My father died in 1979. My mother died more recently, but was in no condition to give interviews. My brother and sister are both younger than me so did not know me during early childhood. 

I did manage to speak to some old friends of the family, who recounted various stories that I also remember. These became family favourites, endlessly repeated by my mother as she tried to give an account of how I turned out. As she kept saying: "you were eccentric from the moment you were born". I think I can now safely say that "eccentric" = "autistic". I wonder how many other "absent-minded Professors" fit that profile.

One of the earliest stories concerned this interaction with my paternal grandmother:

GRANDMA: Look! Look at all the lickle dickie-birdies on the lawn!

ME: Yes, Grandma. Three starlings, a blackbird and a robin. Erithacus rubecula. It’s a male or a female: young birds lack the red breast.

According to my mother, I was 3 years old when that happened. I'm a bit sceptical about that, but I was very young indeed. I had memorised the contents of the The Observer’s Book of British Birds. I used to read it over and over again, fascinated by the information it contained. To this day I can recall the layout of each of the pages, with their alternating black-and-white and colour photographs. Birds, and the natural world in general, became my special interest during early childhood.

From my point of view, this conversation was far from an example of eccentricity. I merely wanted to share what I knew. I don’t think I was showing off or being arrogant, and I certainly didn’t want to embarrass my grandmother. It was just that these facts were fascinating and I wanted to get them out of my head and into the world. Looking back, I now realise that of course that is exactly what I have been doing all my life: absorbing information and ideas, critically examining them and then enthusiastically communicating them to others. That is the essence of being a Professor, I suppose.

My ability to focus so intensely on things caused tensions, especially with my father. As I grew up, I found I had a 'photographic memory' (although this is a misleading term). I could read whole paragraphs or even pages at a single glance, a technique which I still use in my academic work. My father, by contrast, was proud of the fact that he had never read anything apart from the Bible. One day, when I was aged perhaps six or seven, he snatched a book out of my hand:

FATHER: You cannot be reading that properly! You are going too fast! 

(He read aloud half a sentence from a random page).

FATHER: What comes after that?

ME: It appears on page 23, which is a right-hand page, near the top. 

(After which I quoted the rest of the sentence exactly, and some of the following paragraph).

He never challenged me like that again.

My parents were Christians who believed in the old maxim “spare the rod, spoil the child”. My father, in particular, tried to drive out my unwanted behaviours with threats and punishments. While this was a common enough technique at the time, with me it went beyond what would be normal discipline for a child. My maternal grandparents even intervened at one point, alarmed by what they saw as excessively harsh treatment. My father gave them short-shrift and, if anything, stepped up his disciplinary regime.

Seen from my vantage point today, I guess this was an amateur form of aversion therapy. Behaviour my parents didn’t like was accompanied by an unpleasant stimulus. For example, my mother put a foul-tasting substance on my fingernails to stop my incessant nail-biting (it didn’t work - I just learned to like the taste anyway). My father’s methods were more violent, consisting of verbal and physical punishments that grew in number and intensity. It all seemed completely arbitrary to me. I can remember trying to work out why I was being punished. It seemed to happen on alternate nights, and I started to keep track of the patterns. I made diary entries about it. Thursdays were particularly bad days. I can remember sobbing uncontrollably into my pillow one day and resolving that I would never forgive my father for his unfair treatment of me. 

I was frequently told off for being “too clever by half”, being “selfish” and “trying to be different”. In one celebrated incident we, as a family, visited some church acquaintances who lived nearby. The wife of the house served “curry puffs” for tea. I expressed my disapproval with such precision and ferocity that I had to be whisked away. We rarely visited anyone after that, with the exception of a few relatives and family friends who were close enough not to be bothered by my “eccentricities”.

The problem was that I did not know I was different. Each day would begin with the overwhelming inward stream of information from my eyes, my ears, my nose, my mouth, my touch, that I still experience to this day. At the same time, I would launch myself into a futile effort to try to connect it all up and make sense of the world. I worked so hard to understand, but could not, with the result that I had a sense of failure every day. I assumed that everybody else was having the same struggles, but were more successful than I at dealing with them. It took many decades for me to realise that, in fact, they were not and I am different.

I always tried very hard to behave well. I was never violent and I didn’t have meltdowns. Instead, I internalised everything and would shut down, often unnoticed by others. Why did I do this, when I was being overwhelmed by such powerful feelings that I would lose contact with the world around me? Because I was working so hard to do the right thing, to get it right, to abide by the social rules as far as I understood them. I believed that my honesty would shield me from getting into trouble. I was ridiculously honest and would tell my mother not only the things I had done but also the things I was planning to do, for example:

ME: I’m going outside now, to play in the mud.

MOTHER: Don’t do that.

ME: Oh, alright.

But in the end, my honesty was no defence. I was usually wrong and I frequently got chastised. I can remember becoming desperately upset by the injustice of it all. 

This is difficult to write about, not so much because the memories are uncomfortable, but because I would not want anyone to get the idea that chastising autistic children leads to a successful adult. This lies behind Applied Behavioural Analysis and other controversial therapies. In fact, the only things my parents achieved by their strategies were to make me (and themselves) unhappy and to drive my autism underground. Take, for example, the business of eye contact. My father constantly told me to “look at me when I’m talking to you” and backed up the command with punishments. So I figured out how to fake eye contact, something which I still do. This has been a benefit in terms of functioning in non-autistic society, but it has come at a cost in terms of my mental health. He only succeeded in changing outward behaviours, but never got through to what was really going on. The depth of the reality of that is revealed in early photographs, which show me squinting, apparently frowning, while trying to look directly into the camera.

By way of comfort, I engaged in some of the “restricted, repetitive patterns of behavior, interests, or activities” which characterise autism. Some of these were interiorised and so undetectable by others. I would catalogue things endlessly (I still do this) and collect items such as toys, stamps, butterflies, apples, anything. The pleasure was not so much the collecting as the organising into elaborate systems, alphabetically, by colour, by type, etc. I would rearrange the items frequently, using the different systems. I would also repeat certain words and phrases over and over again, mostly either under my breath or in my head, but occasionally, when alone, out loud. And I would constantly try to align things, such as a mark on a window-pane with a tree outside, by closing one eye and shifting my head position. The more obviously physical “stimming” (self-stimulating) behaviours were suppressed by my parents. I can remember flapping my hands, from which I got pleasure, but this was frowned upon and prevented. I would also twirl my hair surreptitiously, something which continued until I was in my mid twenties. 

It’s hard to be even-handed about such memories, and a child’s perspective is not one that really carries much weight in later life. However, seen through the lens of an autism diagnosis, I can understand why my parents struggled so much. They must have been very frustrated and, frankly, exhausted by me. I never gave them a moment’s respite, because my brain was so active and constantly struggling with social and sensory challenges. It is perhaps not a surprise, therefore, that this phase of my life came to an end at age 7, when I was sent away to boarding school. The reason given for this move was that they had “had enough of me”, which I guess sums up the difficulty.

Terminologies

The first three posts in this blog used the two words 'identification' and 'diagnosis' to describe two different things.

Identification is the process by which someone identifies or is identified as autistic. This should not depend on a formal diagnosis - people can self-identify as autistic. If they do, it is not for me to disagree with that. But identification may also be done by someone else, including a professional person. So, I would say that my daughter-in-law and wife identified me as autistic, then I identified myself as autistic, then psychologists identified me as autistic, and so on.

Diagnosis, on other hand, refers to a distinct moment at which the medical professionals, in the form of psychologists, use a set of fixed criteria to evaluate a person and give them the label of "autism spectrum disorder". Of course, this term is highly loaded. "Disorder" implies a neurotypical idea of what constitutes order. The idea of a "spectrum", while very valuable in some ways, can in the wrong hands be seen as simply a sliding scale between high and low functioning (this is inaccurate). And the word Asperger's, which used to be a standard diagnosis, is now obsolete.

Luke Beardon, writing in "Autism and Asperger Syndrome in Adults", is quite clear that autism is neither a disorder nor a condition. He also substitutes the word "identification" for "diagnosis". This makes sense to me, but I would also observe that a "diagnosis" is a significant waypoint for many autistic people. Having an "official" diagnosis can (as it did for me) unleash a whole revision of oneself that is hugely beneficial, if challenging.

The problem with "diagnosis" is that, for those people who do not have one it may seem as if they have been refused membership of an elite club. Now these people may or may not accurately self-identify as autistic by medical standards. The point is though that they do so identify which, as far as I am concerned, makes them de facto autistic. At least, I have sufficient respect for them not to want to question the fact. I would never comment on a person's diagnosis or lack of it.

Another, more ironic, problem with the word 'diagnosis' is that many medical professionals are, to say the least, sceptical of its use in this context. Some doctors I know have even cast aspersions on the whole discipline of psychology, regarding it as not proper medicine. The irony here is that the medical/social model of disability is often cited in relation to autism, but many on the medical side would actually agree that this is not a medical diagnosis at all!

Words matter, and all the more so in this context, because autism is such an evolving field. I still struggle with what to call myself. If I say "I'm autistic", then people often react by comparing me with autistic people they know (either in real life or through the media) and fail to find sufficient correlation. If I say "I'm Asperger's", most people seem to find that more believable, but the problem is that other autistic people and the DSM-5 do not approve the term. In fact there is quite a backlash against people calling themselves "Aspies", I've noticed. If I say "I'm neurodivergent" then people find that easiest to accept, because it doesn't sound medical at all but rather a kind of attractive eccentricity. But now I have strayed too far from autism and invariably find myself having to qualify the statement.

A note - "neurodivergent" is the state of my brain, while "neurodiversity" is a description of humanity. Any group of people is neurodiverse, because everybody thinks differently to some extent. Neurodivergence, on the other hand, refers to a "hard wiring" which is permanently divergent. You can see how quickly these terminologies become confusing!

So, I will continue to use "diagnosis" to refer to the moment two years ago when I was pronounced autistic by professionals. But this was just a way marker. I am now "identified" as autistic, both personally and professionally. So "identification" is my preferred way to describe this state of affairs.

Diagnosis story

It was about four years ago, when I was aged 58, that my wife and daughter-in-law first suggested that I might be autistic. My daughter-in-law is a primary school teacher who is trained to recognise signs of autism.

I was really very sceptical. After all, I seemed to have none of the usual learning difficulties, my speech had developed normally, and my job meant that I was engaging in social interaction on a daily basis. How could I possibly be autistic?

(I should note that I have since figured out that I do have certain learning difficulties, my speech developed very well but in an unusual way, and my social interactions are all rule-based. I'll discuss all these in later posts).

Out of respect for their opinions, I started reading around the topic a bit. I read Steve Silberman's wonderful book Neurotribes and Tony Attwood's Complete Guide to Asperger's Syndrome, several other books and a lot of material online, especially the information provided by the National Autistic Society.

As I read, my scepticism faded away. Like many people, I had a rather limited and clichéd view of autism. But as I read through the catalogue of issues with social interaction, sensory challenges, activities and interests that add up to an autism diagnosis, it became obvious to me that I fitted the profile. The profound sense of difference I had always felt, the various struggles I have had every day of my life with people and with my senses, the obsessive nature of my interests which had led to my career as an academic, and many more things, were powerful indicators.

Somewhat nervously, I took various online tests, most notably the AQ test. To be sure of the results, I would put them away for a couple of months and then take them again. The results were unequivocal: I scored very highly in the 'autistic' range every time.

At this point, I identified as autistic. Now I began to wonder whether getting a diagnosis was a good idea. This was by no means certain. After all: I was now nearing 60 and had lived most of my life. What difference would it make to be diagnosed at this late stage? I sought advice from the NAS, who were very helpful. Without directly answering the question, they provided me with loads of relevant information and offered a listening ear.

After much hesitation, I eventually decided to go ahead. I am fortunate to be able to afford to have it done privately. I did not want to occupy a space in the queue for an NHS diagnosis. Autism diagnosis is a slow and difficult process, and I know that many people have to wait years. So, I went private.

The psychologists' questions were very clever. Similar questions were asked in many different ways and in an unpredictable order. This got through to the "inner me", the one that sits behind the mask. In fact, the mask is so well developed with me, that it is really impossible for me to take it off, so this was quite an achievement. In the end the diagnosis was swift and certain.

I was diagnosed with "autism spectrum disorder". I was informed that a few years ago the diagnosis would have been "Asperger's syndrome", but that nowadays we are not allowed to use that term.

Around this time, I also read Luke Beardon's fantastic book Autism and Asperger Syndrome in Adults which really made so much sense. Unusually for me, I spent a lot of time marking up passages in the book. Some of them described me so precisely it was really shocking!

Looking back two years later, I am very glad I got the diagnosis. It has led me to re-evaluate my whole life experience. I now understand how and why so many things have happened, my difficulties and struggles, my achievements and successes. I wish I'd been diagnosed at a younger age, but of course no such opportunities existed back then, except in particular cases.

If any adult who thinks they might be autistic is reading this, please do go through the same process as me. Get in touch with me directly, if you like. A diagnosis does not suddenly make everything simple and of course it does not change the autism, but it is liberating and gives a depth of self-knowledge and awareness that is immensely valuable.

Autism Identification

• What does it mean to be identified as autistic late in life?
• How does it change your understanding of your past?
• What does it mean for the future?

This is a blog written for people who have identified as autistic later in life (in my case, aged 60). So much of what is written about autism concerns children. But all those children grow into adults. I am an example of autistic life lived unawares. There are thousands of people like me.

Late identification or diagnosis changes your perceptions of your lived experience. That profound sense of difference which was always present but had to be ignored, or suppressed, or overcome, is now validated. Suddenly, life makes sense in a way that is both liberating and transformative. Past events shift into a different focus. The present and the future become charged with a new meaning. But this profound change brings challenges too.

This is the beginning of a blog that will reflect on themes and ideas that seem important to me. Remember, though: "when you've met one autistic person, you've met one autistic person". I do not speak for all autistic people. I can only talk about myself and pick out things that seem to have a wider relevance.

I am a successful academic who is also autistic. I am most certainly not the only autistic Professor. I personally know two others who have had an adult diagnosis. I know several more who self-identify. I believe that autism is more common in academia than people realise.

I am also not a Professor of Autism. My research areas have been Music and Computing. These are in fact 'special interests' and I have been fortunate to be able to overthink them for a living. I am interested in autism research, for sure, but I am not an expert.

So, this first post is just a way of introducing the blog and myself. The next step is to recount the story of my late diagnosis...