Book Review: 'Avoiding Anxiety in Autistic Children' by Dr Luke Beardon

Book Review: 'Avoiding Anxiety in Autistic Children: A Guide for Autistic Wellbeing' by Dr Luke Beardon. Published by Sheldon Press. ISBN-10: 1529394767. ISBN-13: 978-1529394764. Paperback: £10.99. Kindle: £7.49. Available from 10 December 2020. Pre-ordering available on Amazon.

I was sent an advance copy of this new book by Luke Beardon. I was initially cautious about reviewing it, because I am hardly an expert on children. However, it soon became obvious that I am in fact perfectly well qualified, because I was an autistic child myself once and can remember that experience in detail! So, here is my review:

The very existence of this book is a mark of how far we have come as a society in our understanding of autism. This will be small comfort to the many thousands of autistic people whose anxiety levels remain high, because the lessons Dr Beardon teaches us have not yet been learned by wider society. Indeed, the book begins with a powerful statement by the author, who hopes that it will "swiftly but surely get removed from the bookshelves" as its insights reduce anxiety. This is probably a distant dream, because anxiety remains such an enormous issue, and not just amongst children. 

‘Avoiding Anxiety in Autistic Children’ is written with Luke Beardon's trademark mix of a highly readable style that is approachable for non-academic readers, coupled with a deep understanding of autism built over many years of research and observation carried out at The Autism Centre in Sheffield Hallam University. He distils the wisdom of autistic experiences in a way that speaks directly to the individual reader. He is keen to emphasize the differences between autistic children and so avoid falling into a trap of over-generalisation. To achieve this, he supports his text with numerous first-person case studies from autistic people. This leads to a remarkable book that alternates between moments of deep recognition and precious insights. 

Beardon expands his foundational equation "autism + environment = outcome" with new ones, such as: "the level of enthusiasm shown for a passionate interest = the amount of pleasure a child gets from it" and "the better informed the child is = lower risk of anxiety". These principles underpin a series of calls to action or advice for parents and educators and anyone involved with autistic children. Since these recommendations come from a position which seeks to improve life for autistic people, they invariably make sense to this reader. My most frequent reaction was a wistful "if only people had understood that when I was growing up!"

To take just two examples from the many that stood out for me: he includes "fear of getting it wrong" as a common cause of autistic anxiety and demonstrates with many supporting examples how it can lead to a dangerous state of affairs in which the child is inhibited from trying anything new; he also describes very well the destructive tension between a strict adherence to the rules (e.g. following a timetable to the second) and not knowing what the rules are (e.g. the unwritten rules that bedevil social interaction).

One particular interesting comment was the suggestion that autistic children "would actually be better suited at Doctoral style learning than secondary age educational systems". This led me to speculate what an autism-friendly curriculum, which actively encourages intensely focused interests, might look like. I also would have liked to see even more discussion of exams, which are such enormous sources of anxiety for all children but often especially for autistic children. To what extent is the increased testing regime which permeates education a cause of increased anxiety in autistic youngsters?

The general methodology in this book is to explore the extent to which external factors influence autistic people. This is a positive approach, because it shows how important environment can be for anxiety regulation. It teaches adaptability and flexibility and advocates passionately for an increased understanding of autistic children. It is of some comfort to realise that there is now a significant work by one of the leading experts on autism that elegantly summarises the important issues in such a readable and authoritative way.

Medical perceptions

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

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

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

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

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

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

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

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

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

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

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.