Wednesday, 20 May 2020
Tuesday, 19 May 2020
Wednesday, 13 May 2020
Sunday, 10 May 2020
Friday, 8 May 2020
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.
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.
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.
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.
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.
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.
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-freeHaving 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.
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.
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).
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.
Tuesday, 5 May 2020
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.
Sunday, 3 May 2020
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.