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.

Awaydays, and how to include autistic people

Awaydays have become commonplace in most organisations. They are a day-long event for employees and managers to spend time away from their usual workplace or environment. They typically include team building exercises, training, or brainstorming activities. They are mainly used in the belief that a change of scenery would enhance creativity and relaxation. 

In practice, many awaydays have gradually lost this original sense of purpose. They often take place just in a different building or room on site, so they are not really ‘away’ at all. They can be full of unstructured or very loosely structured exercises using lots of post-it notes. They are frequently characterised by a sense of futility. This erosion of what seemed like a clear concept reflects their true function: to enable neurotypicals to feel more comfortable with one another. Sometimes the group will bond together in disapproving of the awayday itself. Funnily enough, that outcome can be productive.

From an autistic perspective, this amounts to a nightmare. Awaydays cause more anxiety and distress than almost any other activity. Having established a working pattern and set of routines at work, the autistic employee is suddenly required to stop all that in order to undertake a series of activities that rely on social interactions whose purpose is often unclear and in an unfamiliar environment that may or may not be well suited. 

Since most organisations contain autistic people, it is very important to plan awaydays effectively and inclusively. Here are a few thoughts. N.B. These are just my thoughts - others may disagree or want to add things!

First and foremost, an awayday needs to have a clear purpose, a set of aims and objectives. That should include a statement of why it is necessary to go away, rather than staying in familiar surroundings. If you cannot come up with a convincing reason for going away, then please don’t do it!

I would strongly recommend having autistic people involved in the planning. It seems obvious, but they will be best placed to advise on what will work and what will not.

You should provide information and guidance well beforehand, including an accessibility map and, preferably, a video, or at least photos, of the venue and the approaches to it. There should be a quiet room available and you should have adjustable non-fluorescent lighting and use microphones for speaking. 

You should space out noisy activities or, preferably, segregate them into separate areas. Avoid using balloons or other objects which may cause distress. Make great use of visuals, signs and timetables. Provide a clear running order, highlighting anything particularly bright, noisy or unexpected.

Every activity should be clearly structured, with a defined purpose and statements in advance about what is expected. Give people the option to drop out if need be. Never make “one size fits all” assumptions. Make sure that you know in advance if there are to be any fire drills or alarms. Those can really disrupt everything, for the whole day.

If you want to encourage unstructured social interaction (of course, there is no reason why the entire day should be made just for the benefit of autistics) then signal that clearly and give people who do not want to participate some acceptable way of ducking out. At some autistic events, people wear coloured communication badges to indicate whether or not they are open for conversation.

Bear in mind that autistic people can take longer to process information and may also struggle to explain how they are feeling, so build in plenty of space and time to get the best results. It’s ok to get personal – autistic people love talking about themselves! – but only in a way that gives the sense that we are contributing to a worthwhile exercise. In other words, there has to be an obvious reason. Avoid indirect and metaphorical speech and, obviously, expect social communication that lacks real and clear meaning to be greeted with incomprehension or anxiety.

To summarise: if the autistic person understands the reason for everything, can follow a clear structure and schedule that is stuck to rigorously, and is encouraged to share their insights, then you can get great results. On the last point, be ready: autistic people can talk for an hour or more without stopping on certain topics. It’s a good idea to specify before asking someone a question whether you want a short answer, a long answer, or a very long answer!

Finally, check in on spoons https://en.wikipedia.org/wiki/Spoon_theory Most autistic people have a sense of how they are doing during the course of a day. Ideally, you want to end an awayday with enough spoons to be able to get home safely. If spoons are getting dangerously depleted, then please allow the person to duck out, to avoid having a meltdown or shutdown later.

Emerging from lockdown

A year in lockdown has affected everyone in ways which will only become fully apparent over time. There are the immediately obvious issues of mental and physical health, loneliness and grief, which are a sharp reality for many. But beyond those is a profound change in every aspect of human society and culture. Returning to ‘normal’ is not only undesirable, it is actually impossible.

From my autistic perspective, one of the biggest changes has to do with ‘masking’, that is: performing or presenting as neurotypical in order to fit into society. I learned to do this as a child and have been doing it ever since, to the point that it is impossible for me to remove ‘the mask’ because I do not understand where it begins and ends. Most of the time, I pass as assured and socially capable. People never see the mask, which is a sign of just how well I have learned to wear it.

Since being professionally identified in 2018, a few close friends/family have commented that I seem to be acting more autistic. This is a complicated thing to unpick, not least because I don’t feel my behaviour has changed much, if at all. It may be that their awareness of the diagnosis makes them see things in me that they did not notice before, or it may be that having acknowledged my autism I am now trying less hard to appear non-autistic, or it may actually be that I am indeed ‘acting more autistic’ or performing my autism in the same way that I used to perform neurotypicality. Probably it’s a combination of all three. 

But this is where the lockdown has had an effect. A year of interacting face to face with very few people is making me forget how to do it. I am losing confidence in my ability to behave appropriately. I have a strong suspicion that, when I do start returning to the neurotypical world, people will notice a difference, not because I am ‘acting more autistic’ but because I am not acting so non-autistic. Eye contact, for example, was something that I did with relative ease before lockdown. Now I am finding it harder to do again, in a way which harks back to childhood. Similarly, my ability to read facial expressions has been  compromised both by online interaction and by the wearing of physical masks. When I observe body language on TV or in the street, I am once again starting to struggle with deciphering what it means.

There have been occasions recently where I have been very aware of echoing back to people the way they are talking to me. It’s something I have always done. In the past, once I have felt confident enough with the person, I can move out of that mode and even redirect the interaction somewhat. But now I have forgotten that skill and will probably come across in ways that are not ideal, just because I am reflecting back the mannerisms of my interlocutor.

It’s not that lockdown is making me more autistic. Autism is a steady-state kind of thing. It’s just that masking requires constant practice and I have always had plenty of opportunities for that over the years. The university recently sent me a request to come to campus when lockdown ends, in order to show prospective students and their parents around our splendid new computer labs. I have to admit I find that prospect very daunting. I am getting anxious about my ability to cope in that kind of social situation. I think I need some less ‘mission-critical’ practice before I start re-engaging with the world in that way.

In ten days from now my second vaccination (which happened last Saturday) will have given me full protection. Covid is at a low level locally, so there is really nothing to stop me re-emerging into the world. But I am unsure about it. I think some limited forays will be a first step. Perhaps a visit to the office for an hour, maybe with a coffee thrown in, to get familiar again with that environment. Some low-anxiety social interactions with trusted colleagues too. 

During lockdown I have barely been out of the house. I have only visited the chemist once a month to collect my prescription and, on fewer than five occasions, I have gone to the Co-op to buy one or two items. I have always had a shopping list and have entered and exited as quickly as possible. Although the pubs have reopened, at least outside, I have avoided going back there, even though I do enjoy a pint. I have even become reluctant to consider moving house, something that actually would be a good thing because the present place is inadequate in many respects. I think I want to protect myself from the world. I know this has to change, but the anxieties of doing so are considerable.

Looking back on lockdown

Over a year of lockdown has passed, so I thought it would be interesting to reflect on my experiences from an autistic perspective. Needless to say, these are only my experiences. I do not speak for all autistic people, many of whom have had a very different time, as I well know.

There are many things I like about lockdown. It has made me realise just how challenging it has been to travel into work each day, for example. The sensory issues in commuting alone have drained me far more than I realise. I’ve got used now to ending the day with more spoons, which is a welcome relief. Some days I used to get home from work practically unable to speak or think, or I’d catch the wrong train and end up in Kettering, or some other disaster. Now I end the day tired but relaxed in a familiar environment, which is lovely.

This has meant that I can be somewhat more flexible about routines. Before lockdown, I would follow a very strict sequence of actions every morning in order to conserve spoons for when I arrived at work. So, the morning routine has included the same ordered sequence of washing and ablutions, dressing and eating, packing up my bag and leaving the house, every day for years. My main problem in lockdown has been that Frank Cooper’s Original marmalade, which I eat in Spring and Autumn (Fine Cut in Summer, and Vintage in Winter) seems to be completely unavailable. So I am eating Fine Cut out of season, which is a bit disturbing, but in the grand scheme of things not a major problem.

I generally find social interaction online preferable to face to face. It is entirely predictable and managed. There are no unstructured meetings or casual encounters. Whether it is a management meeting, a class, or just a “zoom coffee”, I know about it in advance. I enjoy that I don’t have to work at reading body language. Again, it has been lockdown that has made me realise how much effort that took every day. People often say that autistic people cannot read body language. I’m not sure that’s entirely true. I spend a large amount of time reading body language, because I understand that it is an important method of communication amongst neurotypicals. I’m not saying that I really understand it, but I am pretty good at spotting details and often notice things that others miss. It does require a lot of effort, though, so it is a great relief not to have to do it.

However, this absence introduces a new anxiety: have I now lost the skills to be able to decode body language and facial expressions? Those would take an enormous amount of work to rebuild. I have noticed that I am losing the ability to pretend not to be autistic. Now, many people will say that’s a good thing because masking is bad and we should be authentically ourselves. I would not disagree with that point of view, but the problem is that I then lose confidence in my ability to interact socially and start to become anxious about meeting people at all. Over the last few months I have started to get nervous before I meet someone. This is unusual for me and potentially a big problem in my line of work. 

There has been a major downside in interacting online with my students. They simply refuse to switch on their cameras, so I would not recognise any of them if I met them face to face. This is very strange. They know exactly what I look like, but to me they are just circles with initials inside. This creates quite a pressure on what will follow when we finally do meet. One other problem with online interaction is automated captions. Because of my hearing impairments, I do rely on these quite a lot. But the error rate is quite high and they can create as many barriers as they remove. An example of technology not being good enough for its intended purpose.

One benefit of all the extra energy I have saved up is that I have become much more active as an autistic advocate, both at work and in the world at large. Again, I think lockdown has contributed to that development. It has been easier to sign up for things, such as advising the NHS in Birmingham, or giving a presentation about my experiences to an EDI conference at Edinburgh University (both things in my calendar for this month) when I know that I don’t have to travel to a new place, meet people, etc.

My main anxiety at the moment is the end of lockdown. I really do not want it to end. I am not looking forward to going back onto campus with its chance encounters, random events and sensory challenges. My university’s campus is pretty typical. Every building is a mess of flickering fluorescent lights, asymmetrical patterning, haphazard “design”, high arousal colours, confusing signage, noisy spaces, drifting smells, bizarre heating, reflective surfaces, and so on and so on. On the plus side, my office is nice and quiet and hidden away, so I can be fairly surreptitious. If all the buildings were more autism-friendly it wouldn’t be so daunting, but I’m afraid they are pretty horrid. I’m trying to change that through my work on the disability action group, but it is not easy.

Overall, then, I find lockdown quite agreeable, and I am not aware of any negative impact on my mental health - quite the reverse, in fact. But I do have some anxieties and I am noticing some changes in myself. To what extent these will become a major problem remains to be seen. My survival bag, which would never leave my side before lockdown, has now been gathering dust in a corner for over a year. I am going to have to get it out soon and check that everything is fully charged up and up to date, from the noise-cancelling headphones to the personal air purifier, from the sunflower lanyard to the clip-on shades, and so many more bits and pieces that I use to make life tolerable. That will be a big moment!

Christmas!

I see that several weeks have passed since I last posted a blog entry. This was due to the pressures of the last few weeks of term. Delivering online tuition is great in many ways, but it is also a lot more work, especially in terms of preparation. Added to which, the covid restrictions have created a lot of logistical and administrative challenges which add to the burden. So, I was working extremely hard in the run-up to Christmas.

Ah, Christmas! A festival dedicated to sensory overload and unstructured social interactions. What’s to like? Well, in some ways I don't mind Christmas. I understand that it’s a time to draw closer to family and to shut out the darkness with some festivity and light. I also get that once upon a time it was a period of feasting in anticipation of lean cold months ahead. But since I am not a Christian, Christmas itself has little meaning for me. I prefer the winter solstice, which signals something meaningful: the days finally beginning to get longer again. So, secretly, I celebrate that instead.

From an autistic perspective, the Christmas period can be very challenging.The notion that suddenly the purpose of existence has changed from "doing things" to "joining in" is a source of anxiety. There are a host of unwritten rules that govern behaviour. There are so many sensory issues and so much disruption in the name of “celebration”. It is impossible to avoid Christmas without being “the grinch” (and nobody wants to be the grinch). It’s a social minefield, and the fear of getting things wrong is amplified at this time of year. 

Consequently, Christmas Eve at 1 a.m. found me unable to sleep and listening to the '1800 Seconds on Autism' podcast. I have followed this since the beginning and have found it consistently excellent. I must have been one of the first listeners to 'The unwritten rules of dinnertime', which was posted as Christmas Eve turned. There was so much relatable content in this episode! 

Christmas day itself is supposedly the big occasion, but it can quickly outstay its welcome. And once the day is over, that is not the end of Christmas! It takes weeks to get into Christmas Day and weeks to get out of it. A kind of stupor takes over, characterised by aimlessness. I have been pushing to get started on my new year diet. I do need to lose weight, but more important is to be able to take control of eating and drinking again, to impose structure on the day, to measure and catalogue my food intake.

The giving and receiving of presents is stressful and complicated. How to react in the right way? Also, making the value of the outgoing gift relate appropriately to the incoming one is apparently very important. But ‘value’ is measured on an undisclosed sliding scale of sentimentality, suitability and financial value. It’s the rock-paper-scissors of Christmas, except that working out which trumps which is more or less impossible. Thankfully, my wife handles most of the present giving, so I am very fortunate.

The sensory aspects of Christmas are similarly very difficult. We finally seem to have managed to eliminate tinsel and shiny dirt (aka ‘glitter’) which has made things easier this year. My problem was that they festooned the walls and decor, interrupting my lines of sight of the corners and angles of rooms, distorting my proprioception. We’ve reduced the lighting to just one tree and a window display for outside which is shut behind curtains. The tree has to be artificial. One year my wife insisted that we have a natural tree. Within 24 hours I could barely breathe and the tree had to be relegated to the garden.

The lack of structure of Christmas Day is bewildering. What time do you get up? Once the presents have been opened, it is socially unacceptable to go upstairs and work, so what happens now? How can I meet expectations when I don’t know what they are? My wife found me standing in the living room with my arms folded, paralysed by indecision. Fortunately, she had bought me a Sherlock Holmes Escape Room puzzle book - one of those non-linear, "solve this to advance to page n" challenges - as a present and then allowed me to immerse myself in that for several hours. It was my escape, both literally and metaphorically.

As Robyn Steward pointed out in the podcast, lunch at 4 pm is not lunch! As always, the meal itself was pretty disappointing after all that preparation. Turkey just is not a very exciting food, and the meal has a certain blandness. Added to which, we have crackers and hats. This year, I’m happy to report the crackers did not bang and contained gin, so they were a great improvement on previous years. 

I’ve been reminded of the time a couple of years ago when we visited family at Christmas. The grandson was naturally very excited and we had the whole lot: TV on, lights and smells everywhere, chit-chat all over the place, a strange bedroom, etc. After a couple of hours of this I became overwhelmed and had to retreat to the bedroom where I was able to watch episodes of Big Bang Theory undisturbed. I’ve said before that I understand the representational problems with BBT, but I still find stability in watching the same episodes over and over again. This Christmas, I’ve started watching it again on Netflix from the beginning.

I’ve also started up chess again, somewhat inspired by ‘The Queen’s Gambit’ (another case of a central character who was most likely autistic but this was never mentioned - rightly so, given the time at which it was set). Twenty years ago, I was a pretty good chess player, playing to a reasonably high level in the local club. I’ve decided to revive my rusty skills, starting from the ground up. It’s good to see how the chess world has evolved, with a strong presence on youtube and via lichess. Chess is a structured world in which one has control.

I am typing this on New Year's Day. Christmas was not so bad this year as previous years, thanks to the coronavirus restrictions. It is a shame that something that has caused such misery to so many people should be the thing that brings me relief, but there it is. Even so, it was impossible to avoid Christmas altogether. Now that the worst is over and there is a pleasing prospect of a return to some kind of structured existence, I will end the holiday period by completing a few projects: some scientific reviews, some composition, and reading some books, including those given me as Christmas presents. 

Happy New Year!

Lockdown thoughts

After nearly three months of lockdown I thought it would be a good moment to reflect on the experience from my autistic viewpoint. As ever, I speak only for myself. Other autistic people, I know, have had very different experiences. But there may be some who can relate to what I am saying.

On the positive side, I have discovered how much I like working from home. In fact, it is a revelation just how much time in a typical non-lockdown day I have spent coping with environmental and social challenges. My biggest memory of the last meeting I had at the university is not what was said but rather the horrendous strip lighting, the asymmetry of panels on the walls, and my efforts to mask.

At home, I have almost complete control over my environment, a great routine and a set of rules to live by. I really like social distancing - in fact, I’ve been longing for it all my life - and I find online communication mostly fine, apart from some of the unexpected noises. The only problem, really, is that I don’t know when to stop working, which makes me more productive than ever, but perhaps not sufficiently work/life balanced.

But the message change from ‘stay home’ to ‘stay alert’ has lost me. I can follow the first, but the second is meaningless. And the constant lying and hypocrisy from our political leaders is really distressing. I can only deal with it by treating it all as nonsense.

Worse still, the recent ‘relaxation’ has created all sorts of uncertainty about social interaction. For example, keeping two metres distance is a clear rule, but how can I do that when there are so many more people about? What are the rules if someone is coming towards you in a narrow spot and showing no signs of wanting to move out of the way? I’m just staying at home as much as possible - it’s clearer and safer.

Shopping continues to create anxiety. Whereas before the difficulty was mainly sensory overload, now it’s more about social interaction. I had to leave the queue outside my local Tescos because people were getting cross with me about where I was standing. They actually shouted at me. I had no idea what I was doing wrong. I left before I shut down, but the result was that I did not go shopping that day.

My biggest anxiety is that the university will force me to return to campus. I can do my job perfectly well from home, including all the research AND the teaching. It requires some adjustments, of course, but I find these a creative challenge rather than a major problem. But universities are worried about their futures and are keen to see us back together on campus as soon as possible. If it gets to a situation where they require me to return before there is a vaccine, I don’t know what I’d do. Perhaps I’d resign. I try to reassure myself that  management has been very good at understanding my needs so far, but it still does worry me just the same. 

I like living in a locked-down way, free from many of the sensory/social challenges that I grapple with every day. I hope I don’t have to give up my job to preserve that.

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.

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.

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.