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.

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.

How can neurodivergent artists market themselves?

 "How can neurodivergent artists market themselves"?

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

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

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

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

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

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

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

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

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

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

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

Designing autistic spaces

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

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

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

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

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

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

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

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.

My autistic career

How did I get where I am today? (a look back at my career history in the light of my autism identification in 2018).

In many ways I’ve had a successful career. I became a Professor in 1997 at the age of 40. I have directed research institutes, served on scientific committees, won awards for teaching, founded new programmes, and published a respectable array of books, articles, and other outputs. My musical compositions have been performed around the world and I’ve had commissions from leading orchestras and ensembles as well as the BBC. 

But it has not been a straightforward journey at all. My autism has been fundamental to my success, but also an obstacle at times. Because I was unaware that I am autistic, this has caused a lot of confusion and difficulty which I am only now coming to put into perspective.

Several years ago, my university HR department sent me a request to give an account of how to become a professor. Their idea was to offer advice on career progression to junior academics. I realised that this was an impossible task. How could I explain that I had followed no obvious career path, and that more or less everything that has happened to me has been a matter of chance? 

I have only ever applied for one job in my life, and that application failed at the interview stage. Everything else has come about because somebody somewhere spotted something about me that they saw as valuable. Needless to say, I am very grateful to those people. If I’d known at the time that I was autistic, I might have had a better grasp on what was happening. As it was, I had no idea what was going on. I have steered a nomadic course, driven by interests that I have over-thought for a living.

It would be tempting to see my success as the product of privilege. As a white male who was sent to private school, you might assume that the path would be smoothed out for me. I wouldn’t want to deny my privilege, but even so this was not really the case. I left school  traumatised, unqualified to enter university, without any financial support, and the fabled ‘old-boy network’ was nowhere to be seen. Life has been a real struggle at times, and my relatively recent success has been the result of sheer determination. This is purely down to my autism. Every day of my life I have had to overcome sensory and environmental challenges. This is the way I have lived as an autistic man, and it tended to produce a persistent mindset. I use routines and structure to drive me forwards and I learn to survive in a neurotypical world by ‘masking’. 

My first encounter with the world of work came after a period of pennilessness and trying to survive in London. I had signed on to the dole on leaving school and the unemployment office eventually found me a temporary job. This involved transferring a massive pile of paper traffic surveys into a data format that could be processed. I worked with another young man in an office just off Oxford St. Every day, I would transcribe data. Each lunchtime I would eat the same meal - a mini pork pie and a pint of milk - in the café at Selfridges, where I always managed to get the same seat. I took the same route to work each day and did the same things in the evenings. The tube was a synaesthetic dream*, as I tasted or smelled the colours of the London underground map. It was really autistic heaven and I would still be doing it today were it not for the fact that it was only ever temporary. The only downside was that my co-worker wanted to chat constantly and insisted on playing his radio. I found that talking about my interests soon discouraged him though. So we worked together side-by-side, but were agreeably quiet most of the time.

When that job ended, I tried screwing glass base-plates onto mannequins, but could only survive for a week because of the hellish environment (noise, fluorescent lighting, social interactions). After I left, everything really fell apart. I had almost no money and ultimately nowhere to live. I was forced to go back to my parents’ house, which was quite a challenging environment too, but at least I had a room. There I was able to re-sit my A-levels. This time I managed to get good enough grades to get a university place. Out of the school situation, I could control my environment better so there were fewer social and sensory issues. I finally figured out that what was required in exams was not direct answers to the questions with original thoughts, but rather the regurgitation of a set of memorised ‘facts’. This I could do, although it bored me to do so.

So, I did much better and was awarded a place at a university. By this time, I had convinced myself that I was really not very good academically, so it was a surprise to find that I came top of my first year group in the examinations, with an overall grade of 88%. Suddenly, I had a glimpse of what was possible. Luke Beardon has stated that autistic people are better suited to PhD level work than to school work, and this was really true for me. The deeper I was able to go into a subject, the more I flourished. I found that I knew far more already than most of my fellow students and, apparently, my tutors recognised the fact. I was positively encouraged in my interests, which drove me into some very obscure but highly rewarding areas of music and literature.

While I enjoyed specialising, I also began to realise that academic disciplines were far too constraining. At school I had been made to choose between “science” and “arts” subjects. I generally chose the arts side, but it really was upsetting to have to give up subjects like chemistry. I couldn’t see the difference between empirical research founded on objective observation and subjective representation based on lived experience. The two were simply different sides of the same thing, it seemed (and still seems) to me. The path I pursued as an undergraduate and subsequently was all about work that straddled these two areas.

The conventional view of autism is that “special interests” are narrow and highly focused. Reading the literature, I often see that music and computing, which are my two biggest special interests, are common amongst autistic people. Becoming a professor is usually the result of ever-increasing specialism within a narrow field of enquiry. What distinguishes one professor from another is often quite a small difference between their fields of expertise. In my case, my specialism has been a kind of interdisciplinarity - being able to make connections across disciplines which others fail to spot. I would go further and say that the structure of the modern university is an articulation of neurotypical thinking. Autistic people can certainly flourish within this structure when their interests happen to coincide with the disciplinary focus, but they can also flounder badly when the structure runs against them. I’ve had both experiences in my time as the university has changed around me.

So, I completed my undergraduate degree very successfully and then took a Masters, but after that found myself once again living in London with no obvious source of income. Once again, the social and sensory issues that had challenged me before reasserted themselves. I did not realise what was happening though. If I had had the autism diagnosis then, I would have been so much more able to cope. As it was, I lived a pretty hermetic existence and rarely went out. I tried to earn a living as an independent artist, but that was hopeless. I formed a music ensemble which was quite successful, but it lost loads of money and was unsustainable. I did some occasional work copying music parts, which just about covered the rent, but for quite a few years I was living pretty much hand to mouth on the dole once again.

I read voraciously, though, and consumed as much new music as I could find. Essentially I continued the work I’d done on the degrees, following my nose and researching things that interested me. I’d spend a lot of time in the Reading Room at the British Library as my investigations became ever more obscure. I wrote and published articles about my research. I even appeared on the radio and TV quite a few times. 

The advantage of this way of living was that I was able to control my environment a great deal, had very little social life, and followed my interests. At the time, I thought I was failing, but now I can see that I was living the way an autistic person would want to live. My sense of failure was the result of trying to do what the neurotypicals were doing. I was judging myself by their standards and constantly finding myself wanting. I’ve discussed this in a previous post titled “getting it wrong”.

My academic career, meanwhile, took another wrong turn. I enrolled as an MPhil student, but found myself unable to abide by the conventions required by that kind of degree. So I did some amazing research (all of which was subsequently published to considerable interest) but I presented it in such a way that it could not be accepted by the university. Years later, when I did my PhD, I finally figured out how this kind of work should be done properly, and succeeded with no problem. It takes me a long time to process conventional imperatives like this. Much of my anxiety comes from that sense of being constantly on the brink of total failure. I think this is another autistic trait: an ability to hyperfocus on the local without being able to view the global. That’s something that would need to be tested more scientifically, but it is my conjecture and there is lots of psychological research that supports the idea.

This period of my life was brought to an end by an invitation from a well-known composer to work in France on a big operatic project. So, I had gainful employment in rather grand surroundings and ended up living in Paris, which I did enjoy. Even there, the pattern of life was not dissimilar to the way I had lived in London, but I did have a regular job to go to. About a year after that ended, the same composer invited me to give some part time lectures at a polytechnic.

My initial encounters with lecturing were pretty disastrous. First, I massively over-prepared everything, so the poor students were inundated with far too much detail. Second, I was plunged into a world that relied completely on social interaction, which was not my strongest point. Third, it rapidly became apparent that the students did not like me at all. I remember being given a set of “reflective journals” written by students during a project that I co-supervised. Every one of them was full of negative accounts of me, my personality, my teaching style, even my dress sense. I very nearly quit at that stage.

I also ran into trouble with authority. There were many incidents, but two will suffice to illustrate the point. My office was a horrible colour, made worse by fluorescent lighting. So one weekend I went in and repainted the walls in a low stimulus colour and installed a standard lamp. The following week, I was hauled in and disciplined for “vandalism”. Apparently I was not allowed to customise my working environment. They sent some people to restore it to the original colours and they removed the lamp. These days, I would be able to get things changed as “reasonable adjustments” but, at the time (1980s) no such provisions could be made.

The second incident arose from managers repeatedly lying to me, both in person and in writing, about some crucial resource issues. Eventually, I wrote a memo to a senior figure pointing this out in what were undoubtedly strong terms. For this I was severely disciplined and very nearly fired. Many years later, I was given access to my personnel file and found that this incident had resulted in a memo about me which accused me of all sorts of terrible (and untrue) things. This had been left on my file for two decades. Happily, I was allowed to destroy it, but I suspect it did affect my career progression.

It’s not hard to see the autistic traits here. Autistic people are famously driven by a strong sense of justice and affected by their environment. I had tried to remedy both. What I learned was the limits of my ability to influence and change things. But I did not necessarily conclude that I was powerless. I figured out, slowly, painfully, how to operate within this kind of environment. This was a people-facing job involving many complex interactions every day. How could I manage that? By learning the rules that governed behaviour. I realised that I could easily deliver a conference paper to a room full of academics, whereas I could not have a random conversation with a stranger in a bar in town. I found the rhythm of the academic year, the structures and patterns that govern academic life, the conventions and often incomprehensible rules, strangely reassuring. I worked out how to teach and got the students to like me (I have won several major awards for my teaching). And as my understanding deepened, I began to operate within the structure to improve things, by challenging disciplinary and structural boundaries, by enabling others who shared my sense of what might be possible, and by initiating whole new hybrid disciplines that grew out of my own interests and expertise. I masked a great deal, as I had learned to do as a child, and I suppressed many things about myself, for sure, but I did manage to make progress.

This was not a smooth progression. There were very many failures and missteps, especially when it came to social interactions. For a very long time I made the mistake of assuming that the people I worked with were also friends. Now, so many of them (including the person who gave me the opportunity in the first place) will no longer speak to me. I still have no idea why. But I do know that I have never really been able to fit in with any particular group and of course I now understand that this is an autistic trait. As the years went by, I got better at being able to work professionally alongside people without revealing myself to them too much, so colleagues from the past 15-20 years are generally  better disposed towards me than those from 20-30 years ago. But I remain puzzled and upset by the trail of people who I thought were friends but who turned out to dislike me.

My professorship was awarded following a great success with my research publications. In 2005 I founded a research institute that explicitly combined work from across the university, and I have gone on to do the same at other universities. My moves to these other universities have always been by invitation. I’ve never applied for those posts (indeed, the posts were never advertised). My role has frequently changed within the institutions too, so I have never needed to be interviewed, except on one occasion.

In the late 1990s, I was persuaded that the key to academic success would be to apply for a job elsewhere. I went for the interview and made the elementary mistake of answering their questions literally and in quite an autistic way with information overload and too much enthusiasm. Needless to say, I did not get the job and I resolved never to do an interview again. Years later, I encountered the chair of the interview panel at a conference and he was kind enough to tell me that he regretted my non-appointment, saying: “we now know what we missed”. That was very reassuring. A wise manager once said to me: “the secret to academic success is: stick around”. He was right. The important thing is persistence. It takes me a long time to process ideas, situations, people. With persistence I can get to a successful position. I have never had any particular career goals. I have just followed my nose. But persistence has got me through to where I am today. Never give up!

Finally, I would say that since my identification two years ago I have become increasingly an advocate for autistic academics and students. I work a lot with the academic support people and through the disability forum to improve the lives of colleagues and students. I am trying all the time to help the students to achieve their best and to create pathways that are sufficiently flexible to allow them to succeed. This is an important part of my work. I am grateful for my diagnosis because I now understand how and where to focus my efforts. And I am just beginning to look into contributing to autism research somehow.

*I’ll discuss synaesthesia in another post, but basically it is confusion of the senses, so you can taste colours, for example.

"In-between" social interactions

My career has always involved me in large amounts of social interaction, with colleagues, with students, with the wider public. When I understand the structure of that interaction, what the rules are, then I can generally perform well. Interacting professionally while at work is mostly fine. But it’s a different story when the rules become fuzzy, or non-existent. 

Casual social interactions, including chat, and especially with strangers, are generally problematic. Mostly I avoid them, but when they do happen I can find it an enormous effort to maintain what I now recognise as a mask. I generally do it by collaging together snippets of other conversations I have overheard or viewed in movies or on TV. Another technique, which remains a favourite, is to visualise what everybody is saying, as they say it, as though it is written dialogue in a book. Sometimes I use a play format (ME: xxx, INTERLOCUTOR: xxx) and other times I envisage the pages of a novel, complete with “he said ... she said”s (sometimes with adverbs!). Either strategy takes me out of the situation and able to view things more analytically, but it is an effort and I think perhaps sometimes the other person senses something is going on and doesn’t like it.

But I have been musing recently about in-between situations. By “in-between”, I mean social interactions with professional colleagues outside work or, rarely, with non professionals (e.g. family) in a work setting. 

Music is a social activity. To become a Professor of Music requires social interaction, not just in the making of music but also afterwards, generally in the pub. During my years working in music, I could expect to find myself in such situations at least once a week with colleagues, or a mix of colleagues and students. 

My special ability as an autistic person is to make connections between ideas or things that other people cannot see. Situations like this, often helped by a little  inhibition-removing alcohol, would liberate my flow of thought in ways which could be transformative for others. I have ample evidence, in the form of correspondence and people’s histories, of the truth of this. I have had an enormous influence on many academic and professional lives. Some of my conversations have led to innovative educational initiatives, large-scale funded research projects, book publications, new artworks, professorial promotions, and even changes in people’s personal lives. 

What I would do is to take the interests or expertises of visiting Professors, PhD candidates, undergraduates, academic colleagues, and connect them with other things or people of which they were unaware, or reframe their ideas in ways that had never occurred to them. To do this, I would draw on my vast reservoir of knowledge (some of it very obscure) built up from my autistic interests over the years. Furthermore, I would hyper-focus on all the people I was talking to, making unexpected connections between what I understood of them and their work or interests. It was a bit like the way I would listen to all the instruments in an ensemble and then hear the relationships between them. People who knew me well would recognise the process, to the extent that my name actually became an adjective for that kind of thinking. 

But for this to happen, I had to have an entirely willing audience, and this was not always the case. Some people, understandably, did not like how I could dominate the conversation. I think I alienated quite a few that way. If I did not see an opportunity to speak fluently, I would fall completely silent. People would comment “you’re quiet tonight”. If I then tried to speak, things could quickly go wrong. I now understand why that happened, but at the time I really had no idea. In some cases, the mistakes I made were terminal and some people have never spoken to me again, even though we were close at the time.

The deterioration of my hearing in 2009 meant that I moved away from Music into Computing. One result of all that has been a great reduction in my social life and these days I rarely find myself in such situations. I don’t really miss them much. My ideas remain as fluidly transdisciplinary as ever. I find ways to convey them through other means involving much less social pressure. The autism identification has helped me to realise what was actually going on during those conversations, and I think I would be more conscious of that today. This is not a bad thing. It means that I would be more forgiving of, and able to explain, any negative effects, rather than just becoming confused as I did in the past. It also means that I would be able to see the beneficial aspects of neurodivergence and provide reinforcement of that for others who might be in a similar position.

"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?

Indicators

In the very nice flurry of responses on Twitter to my previous posts, I was asked what were the indicators that led my wife and daughter-in-law to conclude that I might be autistic?

This is a question that really leads on to the re-evaluation of my life experience. So I will try to answer the question directly, but also use it as the starting-point for what will be a series of retrospective posts.

When I ask them how they arrived at this conclusion, there is no single dramatic answer. Rather it is an accumulation of small signs and patterns. Seen from my post-diagnosis position, these read a like a checklist of autistic traits. But none of them, taken in isolation, is necessarily autistic: sensory issues (loads of them), fondness for routines and repetitive behaviours, certain social difficulties, intense focus on specific interests, stimming, organising things, food brand obsessions, unusual anxieties, and just difference. It was the accumulation of these that added up to a strong indication.

My wife tells me that she would not have put all this together had it not been for 'The Big Bang Theory'. Now, I am well aware of the problematic aspects of that programme! But media representations of autism have been few. My wife and I have been together for 25 years and she has been aware of all the traits described above for that time. It would never have occurred to her, let alone me, to link them to autism until recently.

When BBT started, we would watch it together and laugh at/identify with Sheldon Cooper. Every episode there are several moments when she would exclaim: "that's you!" She even started jokingly calling me "Sheldon". We both know Sheldon is a stereotypical caricature, but we still enjoy watching it. I treat it as wallpaper TV for relaxation. Of course, Sheldon is never called autistic, but for my wife the idea that someone could be a successful academic and at the same time struggle was a revelation which led to the indicators of autism.

I remember my daughter-in-law saying to my wife: "he's a bit starey". What she meant by that is that I tend to stare at a person for a bit too long. I've always done it (or so people have told me) but I never thought much of it. I would just say "I'm thinking" (which I always am) and leave it at that. But now, of course, I realise what is going on. As a child I wanted to avoid eye contact. My father (who was a stern disciplinarian) would endlessly repeat "look at me!" and back it up with corporal punishment when I did not. So I learned to fake eye contact. Either I look at the bridge of a person's nose or, if I feel I must, I will stare straight into their eyes but not 'see' them, if that makes sense. But to this day I cannot figure out the optimum duration for such a look. So I just guess and hope it's ok. I don't realise I'm doing it, but it seems to work most of the time.

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.

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.

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.