Fire drill

I thought it would be interesting to give an account of an incident that shows how autism can sometimes affect me in ways which are at best debilitating and at worst downright dangerous.

As part of my job, I sit on various scientific committees which review applications for research funding. These are usually rather sedate affairs, although pretty difficult work because there is always far less money available than demand. It is also very important, both for the new knowledge that will be uncovered and for people's careers. All us panellists take it incredibly seriously.

At one event last year, which was a week-long panel meeting, we were working on the seventh floor of a large office building. At the start of Day 1, the panel organisers advised us that, in the event of a fire drill, we should evacuate the building and meet at a nearby hotel. However, we were also told that in all the decades of such meetings there had never been a fire drill. I, of course, took that literally to mean that there would be no fire drill on this occasion either and put it out of my mind.

Three things I do not cope well with: sudden change; loud noises; unpredictable crowds. When the drill alarm went off on Day 3, all three violently intruded. The sudden change from academic discussion to emergency exit caused me immediately to start to shut down mentally. We then had to get into the stairwell with an extremely loud alarm and descend 14 flights. I scrambled into my bag to find my noise-cancelling headphones. They are the best (Bose Comfort) but even they could not block out the alarm. 

Had it not been for the crowd, forcing me down the stairwell, I would probably have ended up sitting in a room rocking back and forth and waiting for the alarm to stop. Obviously that would have been very dangerous. As it was, I was conveyed out onto the street by the flow of colleagues. I was incapable of rational thought and could not speak.

My group set off towards the hotel, so I walked that way too. But I had no idea why we were going there. I thought perhaps they fancied a walk in the sunshine. As my shutdown deepened, I resorted to one of the things that gives me a sense of normality and predictability: playing Pokémon Go. As I became lost in trying to collect Pokémon, I wandered off and was gone for maybe half an hour. I had no idea where I was and occasionally started crying. The game would bring me back to some kind of stable state, but I would keep sliding away again.

Eventually, some other members of the panel came and found me. I was horrified to learn that they had been anxiously looking for me. They escorted me to the hotel and it was only when we got there that I finally remembered the instruction on the first day. 

After some time, during which I just sat in a corner, the head organiser arrived. I tried to explain that I was autistic (something I had not disclosed before) but his initial reaction was disbelieving. I got the usual: "I know autistic people and you are not like them" response. Later, when we had corresponded a bit, I think he realised he made a mistake and was much more sympathetic, even asking for a report so that they could learn how to do things differently next time.

For me it was shocking, but not surprising, to realise how quickly I could change from taking decisions worth millions of pounds about scientific research to being unable to speak and only able to survive by playing Pokémon Go. All caused by sensory overload and a sudden change in environment and social interaction.

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.

Airports...

I should say right at the outset that I like flying! Once I am in my seat, I know the rules and what to expect, so I can relax and enjoy the experience.

This is just as well, because flying has been quite a large part of my job over the past forty years or so, attending conferences, sitting on scientific committees, and even going on holidays (occasionally).

But whenever people say to me: "you can't be autistic, you're too high functioning", I reply: "you've never seen me going through an airport". After hundreds of trips through these uniquely hostile environments, I still haven't figured out a way to make it on my own without having a shut-down or a panic attack.

Since the diagnosis, I have now finally understood what has been going on. The last few times I have flown, I have made use of special assistance, which has been a great help. It has meant that I arrive at my destination fairly relaxed, rather than in a total mess. Some airports even provide videos of the process, which have been an enormous help in reducing anxiety. I actually watch these videos over and over again, even when I'm not flying.

I also wear the sunflower lanyard. This scheme, which also operates in some supermarkets now, is a godsend. When I am disorientated and lost and barely able to speak, as often happens, a member of staff will spot me and help. I can get confused by even the most apparently simple thing, so having this support on hand is fantastic.

So, what is it that presents such difficulties? There are so many things, it is hard to describe them all. Suffice to say, the combination of these is always overwhelming.

The building

I don't like spaces in which I can't see the walls. I lose my proprioception (which has been damaged by Ménière's too, but that's another story). I don't know where I am, which then quickly means I don't know who I am.

Every airport is made of shiny hard surfaces. There is noise everywhere and a wild array of signs that all seem important. And yet it is almost impossible to figure out where to go. I have often spent a long time standing forlornly in the entrance area, trying to work out which signs to follow, which route to take. I try to rationalise it into: you've got to get yourself into the system, then they can't lose you. But I frequently cannot figure out how to do that, then when I do something goes wrong (usually something to do with check-in).

Escalators everywhere, going somewhere/nowhere. And people...people knowing where they are going, striding purposefully, while I stand and watch. I can often travel up and down escalators several times before figuring out which one is right.

The people

People are stressed in airports. I have seen kindness, but I have also seen the reverse. But nothing can prepare you for the sheer chaos of all the people and the social pressure they emanate as you enter the system. It is completely overwhelming.

My stuff

The sheer terror of it. Passport, boarding pass, extra pass because the online check-in failed, hand luggage, checked-in luggage. Apart from having to remember all this and keep an eye on it, the real stress comes in security, of which more in a moment.

Sensory hell

Shiny surfaces. Shops and their smells. Noise everywhere: people, vehicles, planes, shops, machines, it's just deafening. Horrible lighting - everything is too bright. Asymmetrical patterns. Hand-dryers. Vehicles. Every single thing combines to leave me mentally shaken up.

Checking in

The fear of getting it wrong. I follow the rules as closely as I can, but I am always one step from total failure. The queues are not straight! And the encounter with officialdom is the first of a series of anxiety-inducing situations. That feeling of being sized up. The need to make eye contact. And then the incomprehensible instructions to go to a different gate when, as always seems to happen, the online check-in does not work properly and you have to get a printed ticket.

Security

And now the biggest torture of the them all! This is where I usually shut down. I have stood motionless, unable to speak, surrounded by angry and frustrated fellow-passengers, while I try to find the necessary presence of mind to move forwards. Having to remove metal objects. Following a set of rules that seems to change every time (e.g. shoes/not shoes). The opening of the bags and the arbitrary separation off into another part of the space to be interrogated. The feeling that even a small wrong look or remark can have you arrested as a terrorist. This compounds the inability to read facial expressions. The scan of the body. The violation of oneself. And the indignity of having to put everything back on while people's bags travel down the conveyor belt and shove you along. Disgruntled passengers wanting you to hurry. I'm beginning to panic just writing this! And it all takes place under horrendous lights in a massive noisy area full of machines and people in uniforms shouting incomprehensible instructions.

Since I have been getting special assistance, the sheer extent of my inability to go through Security has been brought home to me. At one point, my escort pointed to two yellow footprints painted on the floor. "Just stand there", he said. I spent ages trying to fit my size 11 shoes exactly into the size 7 footprints, which were arranged at an odd angle, while he stood bemusedly looking on and wondering what to do (I think). I'm a Professor! Yet I cannot understand even this simple instruction. And the worst of it is, I never learn. I make the same mistakes over and over again.

Duty-free

Having got through social hell, it's now time to experience more sensory hell. Why they put a massive perfume shop immediately after Security is anybody's guess, but there is no escape: you have to walk through it. The perfume is violent and sickening, sending my head into a spin. This is usually the last straw for me and I am now in a state of total shut-down, unable to communicate effectively. It can take me an hour or more to recover, which is why I always turn up for my flights about 3 hours early.

Boarding

The boarding gates are pretty stressful too, mainly because of the crowds and the strange ways we have to board the plane. Whether it's a bus and a walk across the tarmac or one of those corridors on wheels, it is always a pressured situation. Getting on to the plane and finding my seat is a relief.

Coping strategies

Before my diagnosis, I had a number of coping strategies. One was to locate the multi-faith prayer room. I'm not religious, but this is usually the only quiet space in the whole airport. I'm willing to pretend to pray just to escape the maelstrom. Another was to use technology to help. I have a personal air purifier which I wear around my neck. I find this helps both with repelling perfume and germs, and with calming me down. I have worn hearing aids for over a decade and I can set them to play tinnitus relief sounds such as white noise, which sometimes helps. And I would use headphones to blot out noise. Since the diagnosis, I have realised that noise-cancelling headphones are a necessity and these have really helped. I have also worn clip-on sunglasses. And I stim - I used to do this anyway, but now I am much more open about it - with a fidget toy or sometimes hand flapping/finger tapping. But the best thing has been the Special Assistance. Being escorted and told where to sit, where to go, etc. has been a massive relief. Also, they have taken me through a side door after Security in order to avoid Duty Free! That has been bliss. And on one occasion the person who was escorting me was autistic himself! So we had an interesting chat. I usually get on well with other autistic people (surprise, surprise).

But why?

On reading this, my wife said: but the real question is: why on earth have you done so much flying if you find airports so traumatic? It's true that I could have declined many of the conference invitations, scientific committee requests, etc. But I did not for two main reasons: first, they are an integral part of my job and important for keeping up to date with the latest research etc.; and second, I always enjoy what I find when I arrive at my destination. After a period of recuperation (usually about 18 hours) I can get out and about. Somehow I manage to forget about the trauma of the airport, until it's time to make the return journey.

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.