Just Another Impossible Day in the Life of an Autist

Just Another Impossible Day in the Life of an Autist 

I shall to write this tale of my day of intense hospital misery with as much humour as I can muster. If I didn’t laugh I would be crying at the hopelessness of it all and just plain give up.  

I should explain from the start that I have a chronic heart condition grace of the massive heart attack I suffered December 2016. On that occasion I suffered severe chest and shoulder pains for three days and instead of getting checked out waited for the pain to blow over. It didn't. I have an incredibly high pain threshold, but even I had to take action. I rang my medical practice to see if I could see someone. Luckily I got through and was told to come along to see if a doctor comes available at some point. I went there in a taxi. Luckily, again, a doctor became available in a very short time. I was told pretty much immediately that I was having a heart attack and needed an ambulance. The advice I received in cardiac rehabilitation in the following year was plain and simple – any symptoms with respect to chest and shoulder pain, I need to call an ambulance.   

Whilst that seems clear enough, things are never as clear as they may seem. And if they are not clear to me, then they are much less clear to the medical professionals. I always seem to be a borderline case, just so much on this side of a physical problem to keep me, friends, family, doctors, and nurses guessing. I'm still guessing. Here is my hunch. I think I suffer from a chronic anxiety in face of the inability to deal with change, uncertainty, and unfamiliarity and this triggers physical symptoms which could indicate a heart attack. I am as certain as certain can be that this anxiety, born first of an undiagnosed autism and then of an autism that is not being handled well in relation to social life, has given me not one but two chronic health conditions. I maintain that I am physically fit and always have been. I can hike miles. I once used to do 500 press-ups a day, 100 at a time in five or so minutes. I do 14km in 30 minutes on my exercise bike and lift dumbbells daily. I have strength and I have stamina. I was examined in March at my medical practice. The nurse gave me a thorough working over, attacking my body with her hands most aggressively to see if I felt any pain. At least I think that’s what she was doing. There was no pain recorded. I wonder if, deep down, I kept saying 'no' to encourage her to redouble her efforts. I found the experience quite exciting, to be honest. All tests considered, she declared me the ‘fittest person’ they had seen at the medical practice ‘in quite some time.’ That begs the question of how many people they have seen since the NHS became a Lockdown service. Maybe they have seen precious few people, least of all the really sick, now confined to base, to die alone in silence. But maybe not. I'm pretty fit. Not a fanatic. But I can still hike up the hills to see the goats and the seals. There was a slight issue with respect to weight. I’m not overweight, still less obese, but pretty solid. The nurse told me that I was packing a fair bit of muscle, which would make me heavier than I looked, since muscle is heavier than fat.   

All in all, I had been given a clean bill of health. I felt like booking another session, just to boost my confidence. Such things are good for the morale. I was in shape, and that despite coming off my health and fitness regime somewhat during the period of Lockdown. I’m not unhealthy.

How do I know that it is psycho-social stresses and tensions that are triggering my physical problems? Firstly, long experience pondering the anomalies of ill-health despite a fair degree of physical fitness; secondly, the pain and anguish that life and relations to uncomprehending others has caused me since ever; thirdly, events of December 2018 spreading into the first three months of 2019. Those events are worthy of further comment. I had thrived during cardiac rehabilitation in 2017 and was putting into practice the good habits I had learned with respect to diet and exercise. By 2018 I was lean and mean. Lean, anyway; the meanness was a work in progress. I had made a promise to myself to seriously scale back my written work. I began work on Dante to help me through the restoration process, and he was an unfailing guide throughout this entire period. The intention was to have a tribute to the peerless poet-philosopher finished and published by the time of the 700th anniversary of his death in 2021. I made good progress. At the same time, people started to approach me with exciting writing proposals for me to undertake. I tried to put them off, but they were most insistent and most persuasive. First off, I was approached to write a book on Lewis Mumford. I would be paid and the book would be properly edited and published. Next, I was asked to write an introduction to the work of Istvan Meszaros by someone of some influence in commons transitions and who knew and respected my work, and knew of my expertise on Meszaros. 2018 was also the two hundredth anniversary of the birth of Karl Marx, who was the principal subject of my doctoral thesis. I felt obliged to write something on Marx given the widespread interest his anniversary was causing.

Despite having made a solemn commitment to cut back my writing endeavours substantially, I had committed myself to completing four substantial writing projects – on Dante, Mumford, Meszaros, and Marx. Of these, the Dante was developing into a different book to the one I had originally planned and mostly written, the Mumford had expanded into a huge and independent preparatory text on modernity and its origins and nature, and the Marx had divided into three substantial volumes: 1) Marx himself, 2) philosophical and methodological questions, and 3) ethics and religion.

There was no getting away from it: the writing was out of control again. And to make matters worse, I had people interested in a couple of these projects, the ones offering money and promising publication, contacting me constantly in haste for completion. The wonderful equilibrium I had achieved mentally and physically during cardiac rehabilitation in 2017 had been thrown under the writing juggernaut, and was threatening to take me under it in the process. One of these projects was more than enough commitment, but four!  It was my own fault. In cardiac rehabilitation in 2017, the nurse told me straight that I needed to learn to say 'no' clearly to people, and to mean it: she told me that it was a matter of life or death. I need to lose people who don't listen.

In the course of the year I produced an immense body of work stretching to over one million words in length, earning some critical acclaim from reputable sources – ‘significant and meticulous’ (The Socialist Review), ‘nothing out there like it’ (John Bellamy Foster). It would take most others a decade or much more to produce work of that quantity and quality. It was hard work, and it put me under a severe strain. But by far the greatest cause of stress and anxiety was the constant intervention and interference of the editor and wannabe collaborator on one of these projects. It reached the stage whereby he would be contacting me weekly asking as to how things were advancing, as though the creative process could be timetabled and advanced in such a way. I had published the Meszaros and the three Marx volumes by this stage and so was feeling very tired and in need of a rest. I was burned out and needed time to recharge. His pressure forced me to resume work when I should have been resting. But it was not the overwork that got me, it was the interference, causing me to worry about his every intervention. Worse than the actual comments received was the anticipation of further comments to come. I lived thinking that the worst was about to happen and, of course, being what 'normal' people considered normal communication, it did indeed happen. For him as for most NT people, this was just basic communication between friends and colleagues. NT peope don't understand how much people with AS struggle with such a thing. I need time and space. And I need people at a distance unless they are very close.  

Something had to give and, a year out of rehab, it did. In November 2018 I was taken to hospital by ambulance with symptoms of a heart attack. I have no doubt that it was the pressure of others that pushed me over the edge. I was kept in a long while as the doctors checked me out and examined my results. They really couldn’t be sure. There was talk of me having to be kept in. As one doctor pondered my condition with me, I told her about the pressure this editor had put me under, which he would have taken to be normal communication but which I took to be interference. I said that I was sure that anxiety was the cause of the problem. ‘Have you been diagnosed with that?’ she asked. No, I replied. I was told that all the doctors could do was rule out physical causes of my condition. This they proceeded to do in the course of some rigorous tests in the first months of 2019. I had a spell in the California mountains in that period, hiking at altitude. By the time I returned to the UK for the physical endurance tests at the end of April I was fitter than I had ever been. My results were declared to be ‘extremely reassuring.’ This was my ‘gotcha!’ moment. I went to my doctor with these results, telling her about my conviction that ‘psycho-social stress’ was the cause of my health issues. In course of our discussions, she raised the possibility of Asperger’s. I was on the road to a diagnosis of Autism Spectrum Condition in September 2021.  

Problem solved, then? No, not remotely. Diagnosis, knowledge, and self-knowledge are only the basis of a solution, pointing you and hopefully others in the right direction; but they are not the actual solution.

As slowly as those of us with autism may move, ‘society’ and the people in it move even more slowly, if they move at all. They simply don’t know about autism and what it entails. And the fact that it doesn't affect them leaves them unmoved when it comes to making changes. People like me look ‘normal.’ In fact, I am eloquent, witty, and appear very confident and capable, which makes it well-nigh impossible for people to see me as vulnerable in social situations and in need of help. Always, whenever I make a request, I register a certain uncomprehending shock in another’s face and/or voice.    

I have all the causes and consequences, symptoms and origins, problems and solutions in my grasp. I have experience and understanding. I should be able to take charge of my life, then? No. Because life is always a social life and, being such, requires the cooperation, help, and understanding of others. I have found that little help, even less cooperation, and almost zero understanding is available. Show the world your vulnerabilities and people will run a mile for fear of being called upon to sacrifice some of their own precious resources in the cause of helping others who show every sign of being always in need. If life is, as the evolutionary biologists say it is, merely a game of survival, then this is a wise choice on their part. You don't have to believe in God and, if you are strong enough, you can choose to go it alone, looking after yourself and favoured others in proximal relation. Not to put too fine a point on it, life is a daily struggle for most neurotypical people, something they barely survive themselves with all of their ‘advantages’ and ‘privileges.’ They have little surplus energy over to spend on others, least of all others who are unknown to them and who are not their responsibility. The great socialist Tony Benn, a man I had the privilege of seeing a few times over the years, was fond of quoting Genesis 4:9 "Am I my brother's keeper?" He wanted people to answer in the affirmative. The Cain and Abel story that that quote comes from is, however, a sad tale of fratricide, revealing that there is something flawed in human nature, suggesting that there are limitations in human compassion. There is a moral to the story. But are people willing and able to read it? As great an affront as it may be to people wedded to public declarations of care for all humanity, autistic people can tell anyone with the nerve to listen that that ‘humanity’ is an abstraction that doesn’t exist; flesh and blood human beings exist in social relations to others, and it is only in those personal and proximal relations that individuals will tend to respond to and care for others, others that they know. The problem with autistic people is that they tend to live at a distance from society and hence be apart from flesh-and-blood others, others who may well be inclined to help people they know. They are therefore reliant on an abstract care and assistance and, unfortunately, lack the primary loyalties and solidarities in which real care and compassion takes place. Too often, that abstraction is empty, devoid of content. I am afraid that, since diagnosis, all that I have found is abstraction and surrogacy, overworked people trying their best to offer a support and assistance that is wholly inadequate, and which they know to be inadequate. The proverb says that the most beautiful woman in the world can give only what she has. And no more. Everyone out there, and the organisations they work for, are giving what they can. And it's not enough to make a significant difference. Basically, the help has involved recycling limited resources applied to inadequate solutions. In the week leading up to being taken to hospital, again, with heart attack symptoms, I had been given mindfulness and breathing techniques in order to assist with my anxiety. These are precisely the things my doctor offered early in 2019 to see if they touched my underlying problem, with further anxiety classes I took in early 2020 offering the same things. They didn’t touch my underlying problem, and so the doctor moved on to the next stage with respect to AS and referral. And now, three years on, having received a diagnosis of Autism Spectrum Condition, I was offered the very same things by one of the autism services I had contacted. If I had someone in my life to laugh with, then I would laugh. But since I don’t, I cry alone in silent sorrow. But one thing that I did learn in my anxiety classes of 2020 was to keep a journal of frustrations, externalize my pains and sorrows so as to unburden myself. Since people don’t want to hear your complaints, you have to create an ear for yourself and pour your pleas and complaints and frustrations into it. And to be fair, mindfulness and breathing techniques are worth knowing and worth practising, as are hikes in the country, listening to favourite music, watching favourite comedies, indulging in your diverse pleasures, such as they are. I learned long ago to do all of this. And to take refuge.

The morning after my discussions with my medical practice over the phone, I woke with a searing pain in the shoulder. It was the kind of pain I had when I had a heart attack in 2016. It wasn’t yet severe, but it was painful enough to wake me in the morning and keep me awake. The pain spread to the chest. It faded in the afternoon and evening, but came back at night. I felt that I ought to ring for an ambulance. But it was late. I wasn’t ready. I didn’t feel like having a shower and packing a bag of essentials. I didn’t know where they would take me either and, more to the point, didn’t know if I would be able to get back. I remembered the last false alarm in 2020, when I was still living in Merseyside, a place I know well. I was taken to hospital but forgot my coat, and so had to make my way back home in the freezing cold. So I thought it best to wait, take my bearings. The pain had faded again. There was still a background presence, especially if I breathed deeply. I rang 111 the next day. It was suggested that I ring my GP for advice. I did and was told to ring 8-30am the next morning, since all appointments were now gone. (I think they should offer a prize, an ice bun or something, if you manage to catch a doctor). Relief at seemingly getting help, or just an ear to hear my concerns, seemed to cause the pain to go away for the rest of the day. I awoke the next morning with tight chest pain. Was it some subconscious awareness that I was waking early to ring the doctor? I hate using telephones (something I tell people endlessly, only to have them insisting on phone contact). I was awake at 7am with the pain. I got the appointment with a doctor at 10am. I was pleased in the first instance to learn that I would be seeing a lady doctor. I know that it shouldn’t make a difference and I know that it very possibly doesn’t. It’s just that in my experience, filtered by my biases, it is the women who tend to see and respond to my vulnerabilities much more clearly and sympathetically than do the men. Or maybe I am more guarded - competitive- with the men. I have a tough protective shell that is hard to penetrate. Maybe the women are more in tune with the subjective qualities of whatever it is that ails me, regardless of the vicissitues of the objective factor. The doctor examined me, anyhow, and expressed her inability to offer conclusive judgement. I seemed to be OK with respect to the objective measurements: pulse, blood pressure, heart rate and so on. But I was pale. She said she didn’t like the look of me at all. 'Not many do,' I replied. She felt me and said I was cold and clammy, which is 'not normal.' She said that she wasn’t comfortable, something was wrong, and she couldn’t tell what. My ailments were not her area of expertise, she declared. Which was helpful. Not for the first time I was declared to be a ‘borderline’ case, the kind of person who is destined to live in the realm of uncertainty and fine judgement – the very place autists hate and need to avoid most of all! 

I’m going to guess here – or merely confirm my sexist bias – that a woman can intuit something that a man sticking to objective facts won’t. (I have reasons to support that hunch in light of what a male doctor told me later that day). She erred on the side of care and caution. So she rang for an ambulance and arranged for a couple of other women to keep an eye on me as we waited for its arrival. One of the women worked in administration. When she learned that I had been registered on an exercise programme through the medical practice, but had heard nothing for six weeks, she found the details for me and gave me a phone number to contact. The ambulance arrived, sirens blazing! And off I went, as an emergency case, yet again. And yet again in the ambulance I got the opportunity to tell the medics that philosophy was rubbish. We were talking football and how great Liverpool are, when I said that I had to give up my Liverpool season ticket in order to finance my research studies. I exchanged football for philosophy – what an idiot! Not very wise at all.

I ended up in Bangor of all places. For all of the appealing jollity of the infuriating song, I’ve never actually been to Bangor, not even for a day, only through it, on the way to and back from Anglesey. It was early in the day, with who knows what to come. So I didn’t occur to me to ask anyone how I was supposed to get back from here should I be cleared. I had a feeling that I was going to be kept in, so reconciled myself. In truth, I knew little of what was going to happen as the day unfolded. Tests and questions.    

The doctors here were no more the wiser. Which is not their fault at all. Whatever it was and is that ails me, I can state in categorical terms that it is more than a medical condition. I am absolutely convinced on this and fear I am doomed to end my days trying to persuade others to see this and, with respect to those those that can (who are not many), offer whatever help they can (which isn't much). I'm less than sure when it comes to identifying what people can do. We are looking at a necessary change of fundamental relations, not one-off events and happenings, mere band-aids and sticking plasters. I knew this to be the case in 2016, in 2018, and in 2020, and I took the opportunity to state my view once more to one of the doctors who examined me. This doctor was a man and – confirming my bias – immediately told me that they can neither measure nor judge questions of anxiety. He’s right, of course. Hence the paradox of me presenting with ailments that are merely the physical symptoms of a deeper, non-physical cause. This seems to be the story of my life. In my work in environmental politics I repeat that climate change is not the real problem but merely the physical manifestation of faulty mentalities and modalities in the make-up of the prevailing civilisation. Fail to address social forms and relations as well as bad metaphysics and morals, and you will fail to address environmental crises properly, offering only surrogates. But my view, in the main, tends to be ignored. People are only comfortable dealing with things that are tangible and which can be measured and quantified. I evade that grasp, always have done and always will do.   

This day was all too typical of my life, a life lived as a ‘borderline’ case, ‘neither fish nor fowl’ as one of my teacher’s declared me, meaning ‘of indefinite character and difficult to identify or classify.’ That sounds like me. That definition didn't prevent teachers from defining me as a 'ne'er do well,' mind. If there are any cracks in any system or institution or rule, then I can guarantee that I will slip through them. People and institutions play the percentages with respect to certainties. Uncertainties  like me are destined to be the exceptions that prove the rule, casting me out on my own as one of life's anomalies.   

In researching this topic, I came across the idea of an autism-friendly waiting room, blessed with dimmed and soothing lights and spaces. That really would have helped. I'm not at all sure it is possible in financially straitened times, though. I also found this article in the Manchester Evening News:   

Manchester Royal Infirmary A&E patients describe Friday afternoon as a 'nightmare' 

Scores of emergency patients were left standing in corridors waiting to be seen by doctors and nurses who were battling through an extensive waiting list   

Friday, evidently, is a very bad day to be in A&E as someone complaining of a severe pain that has now largely passed. In the list of priority cases that continued to flood in I was falling rapidly into the relegation zone. And that represents a reasonable decision on the part of the medics. But it places someone with autism like me in a nightmare situation.  

I quote from the article, for the reason that the very same thing seems to have happened to me, magnified by an autistic condition that leaves you facing a flood of information coming at you from all directions without the editors and filters you need to cope. I swam for a while, and then slowly sank and drowned. 

‘A Manchester university student waiting to be seen for heart pain described the waiting room as something out of a 'bad dream.' "I got taken by ambulance and arrived at Accident and Emergency about 1.30pm," the student, who wished to remain anonymous, said.’  

"I got there earlier, and so had a longer day to endure.   

"It was really just like a bad dream, there were just no beds. 

"My heart rate had gone up to 168 beats per minute and felt like I might go into cardiac arrest, but there wasn't anything anyone could do as there were just no beds free."   

‘The student said that 10 police offices and five security guards were guarding the department to manage the influx of people coming in.’   

I got there early, too, and so faced the longest day. I also got the impression of an enclosed and fortified space early. The first thing I do when entering a building or a room is to look for the exit and position myself as near to it as I can to enable escape should I need to flee (and I am always fleeing). I live life in constant flight mode. It beats having to fight things out in impossible circumstances. I sat and watched the entrances and exits to see how they worked. I noticed that people wouldn’t just enter and exit, but would be paused near the doors either side as if there was an issue or a protocol with the doors. I noticed that either permission had to be sought and/or buttons pressed. I found this most unnerving. My escape seemed blocked. I was trapped in confinement.    

The student suffering heart pain continues: 

‘"I had never seen anything like it before, people were not in a good state of mind," he added. 

"The staff were walking around like zombies, they were so hell bent on getting the list down.   

The staff I saw were personable and friendly, apart from the one doctor who was professional but very much to the point, cutting short what he evidently considered to be irrelevant information on my part. In a rush, with a list as long as your own and constantly growing, that seems reasonable, not least when it seemed clear that I was not suffering and had not suffered a heart attack.    

"I can't fault the staff as they have been absolutely brilliant in trying to see me as quickly as possible," the student said.   

Yup, I’m not pointing the finger at the staff at all, not least because I went in there and hung on in there as a‘borderline’ case about which no one seems able to make a final, decisive, judgement. I was tested and tested, and the results were not conclusive. There's not much the medical staff can do about that other than test again to make sure.  

A spokesperson for Manchester University NHS Foundation Trust said: “Like many Emergency Departments (ED), the MRI ED is busy and patients are triaged and treated according to clinical priority.   

"Unfortunately there are times that some patients may need to wait a little longer and we thank them for their support during these times.   

"We would like to remind the public that EDs are for accidents and serious or life threatening situations and alternative healthcare options such as pharmacists, GPs, Dentists, Walk-in services, calling NHS 111 or using NHS Choices www.nhs.uk are available.”   

I will express that support and give thanks. The severe pain having passed, I was no longer considered a priority patient. And that meant that I was destined to be kept waiting a lot longer than is good for my mental well-being. What the staff didn’t know, or didn’t consider, was that I was autistic and would therefore find such circumstances of indeterminate waiting in confinement - in a place I didn't know - hard to bear. I had emphasised my autism and issues with anxiety in the ambulance as I was being questioned on my condition. In fact, I was specifically asked if I had problems with anxiety. I said that I did and emphasised this point. I can only ask: what is the point of asking and taking details on a person's anxiety if none of it registers? Or maybe the conclusion was drawn that my physical pain was really imaginary in being brought on by mental issues. That figures. But it meant that I wouldn't be treated as a priority case which, in turn, meant that I was put into a situation which would have broken most other people, let alone autistic people who suffer from chronic anxiety. I was kept longer in the waiting room than anyone else, by far. I watched, I observed, I counted. It was an endurance test that would have cracked anyone, and not at all what someone complaining of heart pains should have been subjected to. With respect to the final piece of advice here, I did know of the options of NHS 111 and my GP and had already gone down that route. My doctor wasn't happy with my condition and took it upon herself to send me to hospital by ambulance. It wasn't my decision to call an ambulance and go to hospital but my doctor's, and she should know.

[Additional

A week later, I read this story from closer to my new home 

‘it took an ambulance three hours to arrive, and when crews did arrive, they were "not prepared" for the job at hand… ‘things kept getting worse’ after paramedics showed up … his wife was dropped on the floor while being transferred to the bed inside the ambulance. She then contracted coronavirus after being admitted to hospital.’  

Stories like this are worrying when you feel that your health and your life are no longer in your hands. This is a situation I clearly need to avoid. 

So there it is. I was entering a nightmare situation. If neurotypical people describe such a situation as a nightmare for them, then what word exists for me to describe it adequately from an AS point of view? I'm left thinking that only a painting by Hieronymus Bosch could suffice to convey the horror and madness. Just bear in mind, though, that what I am describing here is less an objective condition than how that external state is experienced on the inside by someone with ASC.  

The day was a case-study on the impossibilities of living with ASC. Whenever you are drawn out of your own world and called upon to work with others and access help and support, you find yourself lost and at cross-purposes with events and others. The day was a nightmare for me, my worst fears concentrated in time and place, each minute seeming like an eternity, each more unbearable than the last. Much worse than the thought that I may have been having or have had some kind of a heart attack was having to deal with the uncertainty and the unfamiliarity. There was some attempt at explaining what was in store for me during the day, but I understood little of it. I had to ask what ‘triage’ meant. I discerned that it meant determining the order of treatment. It took me a lot longer to discern that it very probably meant that it could mean ages before and between treatement on my part. I should have twigged quicker. But there is my trusting, and self-absorbed, nature. Given that there was incredible uncertainty as to what, exactly, was ailing me if anything, I took it to mean that I would be a much lesser priority than those with more obvious complaints, of which there seemed to be many, with many more rolling in as the day progressed.  

The nurse gave me an ECG and then made the attempt to take blood. Heavens to murgatroyd, that woman is a woodpecker judging by the number of holes she made in my arm! Before she even made the first attempt she said that she had had a good day taking blood up until now, which made me think that she was somewhat new to the job and somewhat pessimistic about her abilities. It made me expect the worst. On reflection, I feel I shouldn't have told her that in the past nurses have expressed difficulty in finding my veins. She was most uncertain when it came to lining up potential targets. She was putting that needle in places which I thought most unusual, places where needles had never been before. She proceeded to fill first one arm and then the other arm with holes. This young woman also had a most unusual modus operandi. She told me that she would have to get on her knees to take blood, and proceeded to position herself between my legs. I have had blood taken many times, but never once in this position. I got the impression that she was very new to the job and still at the stage of learning how to do it. Anyone approaching from a certain angle would have wondered what on Earth was going on. She found a vein, anyway, exclaiming ‘there’s a nice big one.’ She said she liked ‘a big one.’ I did think to engage in witty repartee, in the manner of Syd James (you know the line from one of the Carry Ons) but thought it safer to smile and give the impression that I understood her meaning, leaving unsaid whatever it was that was causing the mutual smiles. Search me. Largeness notwithstanding, she missed the vein in any case. She reckoned that my veins kept moving. I made a joke of the proceedings. She was doing her best, had a friendly manner, and no doubt in time will become a real asset to the NHS. Everyone has to start somewhere, so why shouldn't they start with me? (Nervous as I am with needles and blood and females and things). She then went next door to call for help from someone who knew what they were doing. A nice lady came in and took blood from the spot at the bend in my left arm where blood has been taken many times before. I think she knew what she was doing. And I don’t think I am too difficult a case at all. The nurse, dressed in blue, told the novice in green that she needed ‘more confidence.' I think she needed more accuracy. I think it wasn’t so much my veins that were moving as her hands through her nervousness. She attacked my veis like Captain Ahab trying to harpoon Moby Dick. But at least I made her smile with my cheery good humour. I’m somewhat reconciled to being pricked and prodded these days.    

It was still early in the day, and at least things were seemingly underway. But it did cross my mind that that the fact that I had been put in the hands of this warm and friendly novice in the first instance was a certain indication that I wasn’t cosidered to be an urgent case, which further suggested that I would therefore be placed behind priority cases as they continued to come in during the rest of the day. Had I known that for sure, I would have settled for the results of these tests and set about resolving the problem of how I was to get home. Which was a not inconsiderable problem, frankly, seeing as I don't know Bangor at all, and given that public transport is intermittent across North Wales. I don’t know the bus and train times – or the stops and stations in Bangor. I do know that the trains are few and far between and only take you to Conwy and not directly to Llandudno. I thought of a taxi, but where from? And paying with what? I would have needed to have withdrawn money from an ATM. Where are they? 

I was completely unprepared for the day. And autistic people tend not to do anything without planning, preparation, and rehearsal. Journeys like this need to be meticulously planned for autistic people. Bear in mind that autistic people can have a pathological fear and hatred of change and uncertainty and prepare for and plan for everything little thing they do, let alone the big things. Nothing happens for someone with autism without planning and preparation. Planning and preparation create a shape, a structure, and a form that is imprinted on the mind, bringing an inner comfort and reassurance, establishing a degree of certainty in an otherwise uncertain situation. It is a terribly unsettling feeling to venture into the world knowing you are going to have to improvise and problem-solve in light of constantly changing events. If I was to ever journey to Bangor I would have written down all the bus and train times, stops, and stations and rehearsed various scenarios in my head; I would have a map of the town in my possession; and I would have names and numbers of taxi services. And I would plan my day, returning home long before last bus and train. I always plan with the presumption that something will go wrong, leaving the last bus and train as a safety net to fall back on to. Failing those, a taxi. That level of planning and preparation yields me a certain calm and reassurance, giving me the confidence to venture out in an uncertain world that is seldom kind to autistic people.

The feeling that I had been placed on the backburner well behind cases of more urgent need grew as the day progressed. It should have been obvious. And as I had no idea as to how long the rest of the day would be as a result, I was slowly gripped with the feeling of being swallowed up in some kind of Kafkaesque nightmare in which time ceased to exist. I started to count how many people were being seen ahead of me. I also counted how many people I could see awaiting attention, plotting their numbers against the numbers of those being called. At one point I counted twenty people waiting to be seen. And one by one I counted the numbers of people being seen. This after at least a couple of hours of waiting had already passed. I had reached twenty four when, at last, it was my turn to be seen again.    

This time I was examined by a male doctor. He was fine, but quick and to the point. I got the impression that they work on strict ten minute slots. He tended to disengage rather than engage whenever I offered information that he felt to be irrelevant and which I felt to be relevant – social circumstances, recent events, my condition of autism ... In the end he told me somewhat forthrightly that as doctors they were only able to make judgements on the basis of physical conditions. That had been precisely my point with respect to my recollection of my experience of 2018, when being cleared of physical causes started me on the path to the diagnosis of autism. I was trying to explain the catch-22 I now seemed to be caught in. It is the psycho-social anxiety, itself the expression of the social difficulties attendant upon autism, that triggers the physical problems which have all the hallmarks of a heart attack, without being a heart attack. That now seemed to be the problem besetting both me and the health professionals. It’s an impossible situation for both of us, and how impossible was revealed to me by this doctor. He explained to me that, with a heart condition, I would now be inclined to judge every physical problem that troubled me as a possible sign of a heart attack and seek help, whereas in the past I would have been inclined to ignore them. What chance does that give me? I was always inclined to ignore pain and wait until it blew over. I had explained this earlier in the day, causing much merriment among doctors and nurses, who told me that this was precisely the thing not to do. When I suffered a massive heart attack, I waited for three days for the severe, intense pain to blow over. It didn't. ‘Three days?! Have you got a heart left?’ a medic asked, laughing with the others. Not much, I said, causing the laughter to stop. The situation is a serious one, and being caught between contrary advice really doesn't help. On the one hand I am being told – and was told again repeatedly this day – that the first signs of chest and shoulder pain like this and I should call an ambulance; on the other hand, I was also told that, being alert to my heart condition, I would be inclined to think every pain a symptom of a heart attack whereas in the past I would have ignored it.    

So am I supposed to respond to the alarm or ignore it? The answer, it is plain, is that this problem is not a medical one in the first instance and therefore its solution is outside of the hands of the medical profession. But the problem is also such that it cannot but cause physical problems on my part. 

As for the good doctor's advice, well give that man a prize! I have been saying what he said since 2018. I don’t need doctors to tell me of their limitations here, I have been telling them precisely what the problem is since 2018. They are, of course, right on this. In effect, I am going to doctors and nurses complaining of the problems of being autsitic in a society that is geared up in such a way as to make functioning on my part impossible. I am presenting them with a problem that is outside of their competence. I know. It was this awareness on my part in 2019 that caused me to press the issue with my doctor. With physical causes of my complaints being cleared as a result of a series of intensive tests, the way was cleared to examine other areas. We tracked this down to source: an undiagnosed AS. 

Receiving the diagnosis in September 2021, I was inclined to think that my problems were on the way to being resolved. This may well be the case, one day. But not yet. In the meantime, I am still locked in this endless, hopeless cycle, seeking solutions in places where there are none, seeking help where help is merely surrogacy and sticking plasters rather than solutions. In attempting to force the issue in a medical context in light of physical complaints, I am destined to keep drawing blanks. The doctors are right – this is not, at base, a problem that lies within their competence. But this is why it is a hopeless and endless cycle. I have explained the nature of the problem, the need for adapted employment, the need for others to help me in social interaction and communication, the need for social connection and engagement. Society and its members do not cooperate. I have been doing all that I am able to do. Health-wise, I have a good fitness programme comprising diet and exercise. I have worked with Remploy and other Work and Health programmes to find suitable employment in light of my ASC. The result? I landed a job which was an AS person’s nightmare – instructions and orders that changed day to day, and within the day, too, tasks which involved places unknown and unshown, and tools and materials whose location was unstated and had to be located by me. And this having explained all about autism and the reasonable adjustments it required! People smile, they feign understanding and empathy, only to carry on as normal. People either don’t listen, or simply don’t respond because, in a world of limited resources – money, time, patience, sympathy etc – they can’t. The world doesn’t change just because you have been diagnosed with a condition. I am no further on than when I was busy amassing a range of certificates and qualifications, thinking a degree, a PhD, a City&Guilds, and more would impress the world and have it opening doors for me. The accumulation of certificates made no difference at all, none. So that leaves me still suffering from anxiety and the physical problems it incites, causing me to go to the doctors and nurses with a problem that they cannot solve. It may sound callous when they tell me that they can’t act on the things I present them with, but they are right. But, surely to goodness, rather than waste everyone’s time and money, it makes sense for somebody somewhere to open the right door for me. Presuming that it exists. That’s all I am asking for. It’s not much, given the amount of work I have put in over the years. As things stand, I am facing closed doors wherever I look.

When physical problems occur and pain returns, do I sound the alarm and ask for a help that can never come? Or do I simply ignore? At one point do you simply fall back into a resigned acceptance? It is no wonder that Françoise Hardy is my favourite female singer. Her voice and her lyrics are characterised by an accepting resignation in face of dreams, hopes, and visions she knows to be impossible. She started sad but hopeful but, as the years went by, gradually lost her yearning for something better. This is life. When sadness is your lot, the only peace you can ever have lies in acceptance. Such appears to be the message of her songbook. I thought she was singing my song from the very first moment I heard her voice. Having translated her lyrics, I now see how much.   

My final words with this male doctor were not encouraging. I explained my predicament with respect to not knowing Bangor and not knowing my way home. He asked whether I had anyone who could give me a lift. AS predicament #whatever – I have no one. No one close, no one nearby, I am on my own. Comme d'habitute. Time and again, ‘normal’ people presume that everyone has someone, that everyone is connected, and that everyone has family and friends. And the sad fact is that the people who are really in need are vulnerable precisely because they don’t have anyone they can turn to in a crisis, nor even for a small favour. Hence the endless calls for a help that never comes. Hence the hopelessness and the resignation, the pain and the frustration. I don’t know about heart attack, but heart-break is a real condition and it is much more than a medical condition. I was left yearning for the days when everyone I loved and who loved me in turn were still alive. When you look to the present and find nothing, and see the future as no more than the present enlarged, then you tend to look to the past, to the times when things were better. I asked the doctor about buses and trains, and he told me to ask at reception. As I set about practising the assertiveness that clueless advisers have urged on me, there was knock at the door, with a nurse asking about the availability of the room. ‘It’s available now,’ the doctor said, and he took the opportunity to shoot off.    

‘The truth will set you free,’ said Jesus Christ. Maybe. But it doesn’t set others free. And in a social world, you are always having to deal with these others. People like me are quickly submerged and overlooked in a crowded world of talking heads. In the rush of numbers my voice was drowned out again.   

I plucked up the courage to go to reception. I wonder if people realize how intimidating something seemingly as simple this is to an autistic person. In fact, I didn’t go to reception immediately. Instead, I observed it from a distance, to get some idea of the way it operates. The women were barely visible behind a huge glass case, far removed from the outside world. There were also people waiting nearby and hence able hear every word in their boredom. I hate people overhearing my words and freeze when observed. And always there is the feeling that I will say and do something wrong and be shown in public to be an idiot. That's exactly how my school life went from the first. I was always happier at home. But now I had no home. The whole set-up was off-putting in the extreme. But I was getting increasingly frustrated as time went by waiting indefinitely to be called the next test. I started to get up and pace around. I noticed people watching me do this as I circled round. I may well have exuded the aura of being on the edge. I had noted earlier that the exit seemed to involve some complex process of pushing buttons. I felt closed in. There seemed to be no escape from this situation, which intensified my anxiety immensely. Always, I need an exit. What made matters worse in this case is that, even with an exit, I didn’t know the world outside. I didn't know a thing about the world I sought to escape into. I didn’t know where I was or where I was going even if I did manage to make it outside. My nerves were now shattered. 

I approached reception. I stood waiting to attract the attention of the woman in front of me. AS predicament #even more, I dislike being proactive and speaking up. I don’t like to approach people, I don’t like to engage people, and I don’t like to interrupt people who may be busy. And people are always busy. I assumed that when someone in reception sees a person stood in front of them waiting, then that person may well be wanting to catch the receptionist's attention for some reason. She carried on working, keeping her head down, refusing to acknowledge my presence. I would probably do the same. I had observed the same woman being constantly mithered and annoyed throughout the day, often by the same people, and thought that she had the patience of a saint. Like me. It seems that to be heard in this world you have to be as loud and disagreeable as possible. That being so, it can be no wonder that the world is a thoroughly loud and disagreeable place. I am actually a most agreeable person and I’ll never change. I prefer to amuse and entertain rather than irritate and annoy. Which means I end up bottling up all manner of frustrations, and receiving precious little help, for the reason I rarely ask for it. And, being blunt, whenever I have asked for help I have learned by hard experience that it isn’t available. At some point you just stop asking. I understand now why my father kept his problems to himself. A problem shared is a problem halved, and a problem halved is a problem doubled. People don't want to be burdened, they want someone to lighten their burden. 'Jesus is my friend' as Marvin Gaye sang.  - God Is Love/Mercy Mercy Me (The Ecology). To think some clueless environmentalist once screamed at me when demanding to know what my strategy is. There it is.  

I was rescued from my silent stillness, frankly paralysis, by a woman to my left, who asked if she could help. I explained that I had been brought here by ambulance, don’t know Bangor at all, and needed to know how to get back to Llandudno. She explained that there is a bus stop outside that would take me to Bangor, and then I could find the station that would take me back by train. Then she said she had no idea when the last train is. I also knew that the train, if I could find one having found the station, only went to Conwy. And it still left me wondering where the train station was in Bangor should I ever get that far. She lost confidence and said that it would be best if asked a nurse. All things considered, it would be best if I married a nurse. If she can put up with the occasional annoyace and irritation, I think she would find me amusing and entertaining in many pleasurable ways.   

But what a nonsense this was! I had asked a doctor about how to get home, who told me to ask someone at reception, who then told me to ask a nurse. I’m sure the novice I met at first could have been much more help than all of these, what with her wayward aim and unnerring sense of direction!    

It was utterly bizarre having to endure all of this stress-plus insanity whilst being checked out for a possible heart attack. If I hadn't been having a heart attack when I entered the hospital, the events I had endured during waiting and testing could have been designed to bring one on. Much more of this and I had no doubt that I would become a priority case after all. This was an AS person’s worst nightmare concentrated in time and place. I seemed to be confined in a building from which there was no escape, in a town I had no knowledge of even if I did manage to make may way outside into it. I was condemned to an endless waiting, not merely for further inconclusive testing, but to see if anyone could help me find my way home. In fact it was the latter that was keeping me hanging on beyond endurance. If I did leave now, I had no idea where it was I was going. Reception had proven useless. So my last and only hope was seeing another doctor or nurse and insisting from the first that they show me the way home before they tested me again. I wanted to go home. I had had enough.   

And then there was the toilet situation! First of all, I don’t think there were any. I paced up and down and found none. Secondly, there was the near certainty that if you disappear for a couple of minutes it was a racing certainty that your name would be called and missed, dooming you to spend another eternity waiting. The relentless piling of uncertainties on top of one another was doing nothing for my nervous system. I started to pace round and round again. I do it instinctively, without thinking. I like to rock, I like to spin, I like to circle round and round. It relieves stress, and it creates familiar patterns, giving you a feeling of being productive and in control in situations in which you are helpless. I started to watch people as they got out of their seat and moved somewhere or other to the right around the corner. I wondered if they had found Shangri-la. I'm not sure if my behaviour was starting to look peculiar. doubt that it is normal to monitor people as they make their ways back and forth from the toilets. But I noticed others watching others too, the games of little furtive glances to the left and to the right. People become people-watchers when trapped together in a confined space. There wasn't much else to do. We were the only show worth watching, the only book worth reading. We should have taken it in turns to tell our stories, as in Sartre's No Exit, the play in which Sartre opined that 'Hell is other people.' I have known much greater Hells than people.      

It seemed that I was locked into an endless cycle of endless waiting and testing. There seemed to be no exit and no end-point for the very reason no-one could be quite sure of the nature of my problem. But it was still worth waiting for the next cycle of tests just to be able to find someone who could tell me how to get home. By now, I was gripped by a truly horrible feeling. Bear in mind that the unknown, the uncertain, and the unfamiliar cause immense stress for people with AS. I can manage such things for an hour or two, tops, in the knowledge that I have an exit and a place to return to. Here, I couldn’t see how I could escape, nor where I would go even if I should manage to make my way out. I mean, which direction do I go in the first instance? I don’t know where anything is in Bangor. I don't even know where the centre of Bangor is. I guessed, and during the day learned, that the hospital wouldn’t necessarily be in the centre of Bangor. Just as Whiston hospital is just outside of Prescot, St Helens Hospital an hour’s walk from my old home in St Helens, and a mile from town, and Broad Green quite a distance away from Liverpool. So I guessed that the trains and buses and taxis I needed to get me back to Llandudno were possibly a mile or more away. It was a good guess. No exit, and no point exiting, in any case.  So I had the company of people.  

And so I waited and slowly fell apart. I was due yet another ECG. I had had two already during the day. The results were declared “OK,” but not conclusive. In fact, one nurse told me that the patterns were 'odd,' having more or less all the right things, but not necessarily in the right places. I have been told something similar before, that I sound good in the flesh but much less good on paper (the results). Since I had a heart condition, it was deemed prudent to test again. But I wasn't a priority case. Hence the endless waiting. But I already knew as the doctors already knew, that we were looking for something that was not at base a medical problem. We were all of us trapped in this ‘autism and anxiety’ predicament, a true 'no exit' situation if ever there was one. The problem and hence the solution lies elsewhere. I know it, and doctors know it. I just need others to see it and act on it. I can’t do it alone. I should know. I have spent my entire life going alone. I have run this far and can run no more. I can do so much. No one could have done any more. You need others but given the archetypal problems of autistic people with social interaction and communication, AS people do not have the others they need. I had my mum and my dad, and now they are gone, after a lifetime of unconditional love and selfless devotion. You cannot expect that level of commitment and sacrifice from others. The primary loyalties within proximal relations are the ones that count, and autistic people tend not to have what it takes to develop and maintain those. It is a classic catch-22 situation, the solution presuming the presence of qualities which, if they existed at all, would mean there would be no problem in the first place. Hence my increasing appreciation of the quality of an accepting resignation in the voice and songs of Françoise Hardy, a woman who seems to share my thoughts and feelings concerning the impossibilities of social connection and communication. From the first she sang of a yearning for love in a world without reciprocity, and with little hope for ever finding it. Sometimes I was inclined to think it an act on her part, posing as the prettiest wallflower in history, but as you observe her as the years go by it becomes clear that that is her.  

I made a renewed attempt to reconcile myself to yet more endless waiting somewhere outside of time and place. I was feeling increasingly dislocated and disoriented, as if I had been removed from reality. I have no doubt that by this time I was suffering from complete sensory overload. Remember that my day had begun before 7am with intense chest pains. I had been told the day before to ring my medical practice at 8-30am to try and book an appointment with a doctor. I psyched myself up for the telephone call. I hate telephones and avoid them like the plague. I wrote everything I needed to say down and had it visible next to the phone. 8-30am came and of course I was met with a monotone beep. I didn’t know whether I was on a waiting list and therefore should wait, or put the phone down and try again. I called on my mobile at the same time, receiving a message that the line was busy. I kept calling for over ten minutes on both phones. My nerves were shattered early. I thought to ring 111 instead, or even 999 for an ambulance. At 8-45am I was finally put on a waiting list. That fifteen minutes had seemed like fifteen hours. That’s the level of intensity that people with AS feel dealing with the normal actions of everyday life. That's how quickly a person with AS can burn out. I got through and had an appointment booked with a doctor at 10am. I thought it wise to have a shower, which is always a source of stress. I have no idea what I was anticipating, but I washed everywhere for once, paying particular attention to my feet. I am used to extremities being checked with my diabetes nurses, in the good old pre-Lockdown days in the dim and distant when those in need had regular checks. Things start to tingle and/or go numb, I have been told. I prefer a ‘good wash’ to a shower, mind, and it does the trick more often than not. I have sensitive skin and changed textures scratch at me like sandpaper. The same with respect to washing clothes. I think I could have lived well as a goat. So just having a shower early in the morning is something that causes me great distress. But I had a good shower in preparation all the same. It also struck me that I didn’t have a contact number to give in case I was asked for one, as I surely would be. I had to go and find my brother’s. I had to email to ask him, frankly, seeing as I couldn’t find it. I found it in the contacts list on my mobile phone, oddly enough. I made up a bag with all my medication and toiletries, and then proceeded to forget it. This was all before I had even seen a doctor, let alone been tested. So try to imagine as best you can the state I was now in having suffered hour after hour of uncertainty and unfamiliarity, from the 8-30am phone call to the medical centre to after 9pm. That is an awfully long day for anyone, but for an autist for whom any five of any of these kind of minutes can seem like an eternity, that is the longest day of all. I could stand no more. I could wait no more. The amazing thing is that I hadn't cracked much earlier. The strain was much too much to bear. The same in life. At some point I have to call a halt to the waiting. 

I am not a misanthrope, that is not the problem. I like people. I lack entirely the contempt and condescension with respect to ‘ordinary’ people that I see in far too many people out there, people who presume to know better and be better than others, but do not and are not. I have always been and will always be a democrat and see the democratisation of power and distribution of resources the key tohealth and happiness in the sane society. People are really not bad at all, and will help as much as they are able. But everyone is struggling to get by in a society that falls far short of the democratisation I espouse. None of this is the problem. Problems with social interaction and communication, with reading and responding to cues, understanding meaning, with engaging unfamiliar others, are incredibly draining for someone with AS. It’s not necessarily unpleasant dealing with people. It can be, especially when trying to express a need or explain a problem or ask for help. I would prefer not to. But it can be thrilling to meet people, an opportunity to jest and joke and lighten the spirits. That’s exactly how I was with the nurse even as she punctured my arms full of holes! Super. I can do it for an hour or so. But such engagement is incredibly exhausting for me. I have to use all my resources to get the interaction and communication right. My engagement has to be modulated. Most people proceed by instinct and think no more of the various encounters that are the normal parts of their day. For instance, I am sure that the nurse who came to the rescue of the novice in taking blood would have forgotten me within five minutes of her encounter with me, and maybe sooner. I remember her distinctly, her face and features, the little tattoo she had on her right forearm, her huge black eyelashes, her smile, the blue of her outfit, her slight build, the colour of her hair, and the words she spoke. She was with me for about two minutes, and I remember her as if she were a regular part of my life. In all likelihood I will continue to remember her most vividly. I experience people with that level of depth and intensity. Life is a full-on immersion for me. I may appear guarded and aloof, but this is me trying to put protective barriers in place on account of their absence. Each encounter with a flesh and blood other becomes an event, a drama, a show-piece for me. It should come as no surprise to learn, then, that I have a tendency to burn out.    

The strength of encounter is based on an imaginal intensity. Whatever happens in the outer world is multiplied to a factor of ten and more inside my head. The cool, impassive exterior which can strike people as cold and aloof is actually an attempt on my part to control the passions within. We are dealing with a condition which has impairments in social interaction and communication at its core. Let me illustrate. I had had a bowl of porridge early in the morning, and had eaten nothing since. I also needed to take my medications. Details on my medications had been taken in the ambulance, but no medications had been issued to me, and I wasn’t told as to what I needed to do to access them. To normal, neurotypical people, this is no cause for crisis. You just need to ask someone where you can get something to eat, and ask at reception about your medications. Non-problem solved. What this solution fails to understand is the entire nature of autism, particularly with respect to impairments in communication and interaction. If people like me could do such things easily, then we wouldn’t have a condition. I can imagine being told of some machine which involves entering coins and pushing buttons to access my obligatory cheese sandwich. The prospect fills me with horror. I avoid machines. I was once confronted with the self-service machines at ASDA, since all the staff had gone home. I went back around the store placing the items I wanted to buy back on the shelf. Then there is the ordeal of reading what is on offer and asking an assistant for it. I keep it familiar. I have my favourite mode of shopping and it works well for me. I don’t like to change. So it got to after 8pm and I became aware that I had had nothing to eat since early morning and was due my medications. Imagine how weak and vulnerable and inadequate you feel, having to constantly expose your helplessness to others? And understand why people with AS prefer to do things their own way and go their own way. And understand why constant advice from uncomprehending others to socialize more is not merely unhelpful but hurtful in its ignorance. However well-intentioned, such people are giving advice on a problem they don’t actually understand – if AS people could do such things easily, then they wouldn’t have ASC.    

Something that was hard to bear was the fact that there was no timetable, no schedule, and no end-point, just this indefinite waiting seemingly stretching out to infinity. Given that the doctors were searching for something they were incapable of finding – the reason for heart attack symptoms that lay outside of medical competence – the impossible situation had all the finality of unavoidable fate. That's how my life seems. I had endless tests. None of them showed anything. Yet there was clearly something going on. So I was doomed to face yet more tests after each test. At some point I think this situation reduced to a case of whose patience ran out first, mine or the doctors. And the fact is that they did have cases of greater priority on their hands, with people whose physical problems were clear to one and all. I was in Limbo, my usual place, between worlds and nowhere.    

Uncertainty and unfamiliarity were concentrated with increasing intensity into each moment, resulting in such an accumulation of immense stress that I was soon overwhelmed. I hung on for as long as I could, and much longer than was mentally and physically healthy. In fact I hung on much longer than that, for the reason I could see no way out. The situation, the contact with strange others, not to mention the physical condition itself were all stressful enough, but the feeling of being out of time and place, with no stable ground to stand upon and no familiar faces to reach out to, is hardest thing of all to bear. Because there is no prospect of an end, and no promise of release.    

I thought I was going to be there for all eternity. It was like I had died and gone to Limbo, living in desire but without hope, as Dante puts it. More prosaically, I felt sure that the doctors would keep me until dark, and then turn me out in the middle of nowhere to find my own way home. I felt certain that this would happen. It’s a dilemma. You cling on in the belief that you are about to be seen any minute next, and you cling on for the next hour or two in that state of expectation. That is intensely draining in itself. I was showing signs of despair. I was shaking my head and mouthing oaths to myself at various points. I wouldn’t have been surprised that at some point I didn’t howl out my despair at the utter futility of it all. I sensed that I was losing control. Darkness was around the corner. So I went to reception and told the nice lady there that I had to leave. I asked again for the way home. She gave me directions to the nurse in charge and told me give her my name and ask her for help finding my way home. I found her in her room. Of course I was seeking help at another busy time, when a change-over was happening. The small room was crowded with five people all working on problems. My voice, yet again, was in danger of being crowded out. I gave her my name and discharged myself. One of the men checked my tests and spoke up, "if you're happy with that." I was far from being happy with that, but I’d rather face the music than continue in an endless cycle. The nurse found a bus for me, which was nice of her, and told me that it was due in fifteen minutes. It was the last bus home. My instincts had proven right, again - had I acted later I would have been stranded in Hell. The nurse walked me to the exit to make sure I found the bus stop, pointing me to the right. Finally, I had someone one-to-one in the flesh. I explained to her that I have autism and so find uncertainty overwhelming. Finally, someone got it. Not that it changed anything. I was now on my way out.   

Problem solved? Tension over? Not a bit of it. First of all, I noticed that the nurse had the bus time wrong by two minutes. That might not seem like much of a problem, but it struck me as a discrepancy that might well be significant. I once did an accountancy course, in which it was made clear that if you are just one penny out in your calculations, then you have gone wrong somewhere. The books should always balance and when they don’t they are wrong pure and simple. In accountancy there is no 'near enough.' A close answer is just as wrong as an answer that is miles off. So I started to worry that I was at the wrong stop, and started to look around for any possible other stop. But the bus identified did seem to be listed on the electronic notice board. A woman turned up. I asked her if this is the stop for Llandudno and she confirmed that it was. Which was a relief. Then I noticed the bus had not only gone past the time it was due but had disappeared off the board. It does that when it is cancelled, the woman told me. Is it cancelled often, I asked, fearing the answer. (With AS, you live in fear; fear is your first option). Four times this past week, she said! Absolutely spiffing! Just my luck. But I was in good company. This woman had a mobile phone and knew who to ring to ask about the current state of play with regards to the bus. It turned out that the bus had been delayed due to a crash in Conwy and that it would be arriving some time in the near future. Gee, that was a relief. By this stage, I would have happily had this woman ring for a taxi and pay myself to get us all home safely. There were two other persons present at the stop by now. There's a safety in numbers, I thought. They all seemed nice people. I got the impression that they worked at the hospital. I'll follow them. I'm sure they won't mind.   

And just to prove my point about intensity of connection when it comes to other people, I remember everything about this woman, her looks, age, dress, the way she wore her hair, her clothes, her manner, her words. I remember the way she made a point of drivers changing at Bangor. I remember that she got off the bus at Bangor, which was actually quite a distance away, making the point that I was right to guess that the hospital was some way outside of the centre of the town. The same with regard to the other two persons who came to the bus stop, the young woman with the pony tail and the pink rucksack who got off at Llandudno, the stop before me, and the young black man who sat quietly listening to his music over the headphones. And I remember the people who got on the bus as the journey progressed, the woman who had heard that there would be no buses on her route this week and that she has an appointment at the job centre on Tuesday at 10 am and can’t walk there, and who said ‘God bless’ to the driver when she got off, the man who missed his stop at Penmaenmawr and was given directions how to find his way back, the three ‘jolly’ men who got on at Conwy. And these are just the outlines. I am a people watcher. And I have an acute eye for details. I am sure that not one of these people will have remembered me, apart from the woman I spoke at length to, and her only for a short while. I think she lives a full life. She told me that she had been up since 5am. They will have simply gone about their normal business as normal people. Life is a full-on experience for me. Hence I have to apply shock absorbers and brakes, keep a certain reserve and remoteness, or be burned and buried alive. I spin worlds out of worlds. I need to keep things tight and people close.    

As for the medical state of play after this, the longest day, the results were “OK.” I’ll have to settle for that, not least on account of the fact that I am sure that the doctors are looking for something they cannot find within their own physical areas of expertise and competence. Any problem with the heart here is not one of heart failure but of heartbreak, the loss of the good relations to good others I once had and the failure up until now to replace them with new relations. The problem is not a physical one; the physical problems are simply the manifestations of problems arising in the relations to others in the social world. It is no wonder that I rate Dante so highly, with disconnection and excommunication being infernal conditions that eat away at one’s humanity. I know it by hard experience and I write in hope of reconnection and restoration. It’s a good idea.    

I had no idea where I was or how I was supposed to get back home, and I couldn’t see how these tests could resolve the issue. One doctor suggested that this could have been triggered by excessive exercise with the 4kg dumbbells I use. That struck me as similar to what the doctor told me back in 2020 when he said that the heavy bag I carried in my work could have triggered the pain. That told me that the doctors don’t know and can’t identify the problem and are speculating. I know that this is not the problem. And I know that the doctors can’t find the problem, only clear its physical causes, as I was told in 2018. I have been right all along, going back to the days in which I would refer to ‘psycho-social anxiety.’ The problem is the difficulty that autistic people find when it comes to having connection with others and being productive in the world. It is as simple as that, and it is pointless asking doctors to find the solution. At the same time, it leaves me with trapped within the following predicament. With a serious heart condition I have been taught to be alert to each and every sign of a heart attack and call an ambulance or, at least, seek medical help. At the same time, I am finding it well-nigh impossible to find my place in the world and make connection with others owing to my Autism Spectrum Condition. The stresses, the strains, the frustrations of disconnection and excommunication are putting me at cross purposes with life and its healthy living, causing depressive feelings, and inducing physical reactions that I cannot but react to and alert others to. So round and round in circles I seemed destined to go.

I have read quite a number of autobiographies and personal accounts written by autistic people and people with Asperger’s now. They can tend to have the same character in being inspiring accounts of an heroic triumph over adversity. I have won more than a few little victories over the years, but these have done nothing to reverse the trend towards ultimate failure by way of constant frustration. I'll not varnish the truth in order to inspire people and cheer people up, as much as I love a happy ending. My victories all seem to be won in the context of fighting the long defeat, with actions having all the inevitability of fate. I had thought that diagnosis in September 2021 would be the beginning of a trend in the other direction. Instead, the help I have accessed since is doing little more than repeating all the old non-solutions, with the difference that whereas I once retained hope after each failure, I am now losing it as a result of treading the same old ground. These solutions don’t work, won’t work, and can’t work, not without other things being in place. I need to search and find these ‘other things.’ The same with regard to the medical road. It has served its negative purpose in ruling out a physical source of my problem. I fear that I may be doomed to keep having recourse to doctors and hospitals on account of the near certainty of physical problems recurring. But this isn’t the problem and it isn’t the solution. I know it and don’t need the doctors to tell me that they can do no more for me. It’s just that one day, I am certain that I will receive an alarm call that isn’t false, knowing that it’s always the alarm you ignore that proves fatal.

In the end, I’d had enough at the hospital, just as I have had enough trying to crack this issue with others whose help has turned out to be more of a hindrance. I discharged myself before night fell. I would rather make the attempt to solve an impossible problem in the light than in the dark. In fact, like my old hero Werner Herzog, I would rather face the music than continue the pretence that our efforts are worth a damn and that we are getting somewhere when we are not.    

Herzog tells the story of a flight he was on in the US. Attempting to land in Colorado, the airplane’s landing gear failed to come down, making it necessary to attempt an emergency landing. "We were ordered to crouch down with our faces on our knees and hold our legs," Herzog recalls, "and I refused to do it." This caused upset among the cabin staff, with the co-pilot confronting him and telling him to do as ordered. Herzog again refused. "I said, 'If we perish I want to see what's coming at me, and if we survive, I want to see it as well. I'm not posing a danger to anyone by not being in this sh!**y, undignified position.'" As it happened, the plane landed normally and everyone survived regardless of their position, dignified or otherwise. Herzog received a life ban from the airline for the stand he made. The airline went bust two years later and Herzog lived on. Herzog tells the story to make it clear that he is prepared to face anything that life throws at him rather than run away or hide. Bring it on! It's not the hard reality that depresses me, I'm used to it; it is the futility of endlessly recycling half solutions that I know to be no solutions at all. I hate misplacing hope. I find the world of appearance and pretension utterly vomitatious. I find social media insufferable, packed with so many people who care so much for all 'humanity.' I recently received a lecture from some social media activist, who gave me a lesson on creating safe spaces for the marginalized. 'I am one of the marginalized,' I told him. My words didn't register, for the reason I was shattering his illusions that his extremely caring politics weren't making a blind bit of difference to those actually in need, merely advancing the cause of the loud voices. In the world of the activists, knowing and understanding is conditional on acceptance of activists' claims. I contradict them and so, as one of the marginalized, I neither know nor understand what being marginalized is. Spare me. I've seen through it all and it is vacuous. 

Sometimes, the situation really is hopeless. Herzog’s worldview is bleak and isn’t mine. But if Herzog's view is without hope, it is also without pretension; his freedom from pleasing pieties and hollow reassurances are a breath of fresh air in this age of neuroticism and activism. I can see where he is coming from. I completed the Patient Health Questionnaire at my old surgery in St Helens in 2020, not once but twice. Both times I came out as someone suffering with ‘severe depression.’ But this is where the world of objective measurement revealed its limitations in face of my predicament once more. The doctors have to respond to results like this. In the appointment, my doctor went through the checklist to ensure that there was no danger of me harming either myself or others. I quickly removed her fears on these counts. In fact, I was my usual cheery self, quickly lightening the mood. Give me company and I’m good company. My doctor was quickly reassured, and I soon had her laughing. I come alive if I have someone interesting to talk to, someone to amuse and entertain. I'm OK, I'm fine, I just need an audience, people to play to and play with, to regale with my endless stories. Is this so difficult to understand? More to the point, is this really so impossible to achieve? Any depression on my part is not a subjective or inherent condition but a realistic assessment on my part of the objective reality that confronts me. I have yet to be proven wrong in my assessment of my predicament and the possibilities of its resolution. Hence I refuse to write my story as an heroic triumph over adverse circumstances. And I refuse to be bought off by false promises and half measures. I feel like titling my autistobiography No More Happy Endings. There has been no triumph thus far, merely survival, with appalling casualties and collateral damage suffered along the way. I know for sure that my mother went to an early grave grace of the way that she internalised the pain and suffering I experienced, the result of unknown causes that had the character of malign fate all over them. Try having that knowledge and having it weigh on your conscience if you can. My dad hung on into his eighties, carrying my frustrations along with his own chronic illness. Try carrying the weight of knowing that. Heroes both, martyrs to an undying love. I wish I could have given them the happy ending they sought for me. 

People like a happy ending. I refuse to give it to them. I refuse to confer happiness cheaply, not when its mere possibility has been bought so dearly. When I posted on my AS condition on social media, my post was shared with the words ‘the power of neurodiversity!’ You have got to be joking. Power? There is no power when you struggle to ask for the most basic of help on the simplest of things, when you feel trapped in cycles and situations that strip you of agency, when approaching a receptionist to ask for directions feels like an audience with the Pope, when you have nothing to eat all day, and have been without your medications, and still feel incapable of asking anyone where you can find the nourishment to keep you going. Power is the very last thing you feel with this condition. But it is a notion which pleases those in search of reassurance and happy endings. I’ve never felt this power, only the frustrations of the struggle to survive in its absence; I am not seeing this triumph over adversity, only the constant fighting of the long defeat; and I don’t see the happy ending, not given all that survival this far has cost in terms of lost opportunities, lost loves, and lost lives. And the fact is, to survive in face of all of this and more indicates a strength and a determination that transcends power. AS isn't for sissies. And 'the power of neurodiversity' is fit only for T-shirts worn by those who like to be seen as virtuous. Evolutionary biologists tell us that there is an evolutionary advantage in being seen to be virtuous. In the Gospel of Matthew, Jesus says: "Nor do they light a lamp and then put it under a bushel basket; it is set on a lampstand, where it gives light to all in the house. Just so, your light must shine before others, that they may see your good deeds and glorify your heavenly Father." But that shining of the light is based on good deeds having been done in the first place. 

How much reality can people cope with?   

Feel free to read the full interview with Werner Herzog in The Guardian. It is entitled “death, danger, and the end of the world.” 

https://www.theguardian.com/film/2012/apr/14/werner-herzog-into-the-abyss   

I can’t say that I am particularly attracted to death, danger, or the end of the world. In fact, I do my level best to avoid these very things, which I think is a very sage character trait on my part. I’m a naturally cautious person who, for some reason, can tend to end up in death-dealing scrapes that are not usually my fault. Not entirely, anyway. But running and hiding and pretending are no solutions at all. They are unpersuasive and leave me with a sickly feeling within. I’d rather face reality, even if it is indeed a hopeless one. Come to think of it, walking out into Bangor on a dark night was very much like “death, danger, and the end of the world.” But I may exaggerate. It has been known. I have licence as a story-teller. These were my very first steps in the town. I had no idea in which direction to go. I just followed the words of the nurse in charge, who told me to go straight ahead and turn right to the bus stop, and the bus which promised to take me home. She was a very nice woman, chaperoning me to the exit. As we walked I explained my need to discharge myself, even though more tests were due. I thanked her for walking with me. I am autistic, I said, which means that I suffer from uncertainty and unfamiliarity, and am prone to be overwhelmed by sensory overload. Finally, at the moment of exit, someone understood! But notice what it took. I had got this woman on her own and so had her undivided attention. One-to-one I can speak openly and freely and communicate my needs clearly. In competition with other voices and other demands, my voice is either silent or unheard. Autistic people with AS are forever being placed in social situations which could be designed to have them withdrawing into themselves.

Am I really in a situation in which I have to declare my autism to everyone I meet, be constantly explaining myself and excusing my behaviour, soliciting special treatment? This would be even worse than having to be constantly dealing with adverse circumstances and reactions in new situations and unfamiliar environments. And I’m still not sure it would make much difference. Things and people change very slowly, if at all, even in light of information.   

I know the solution: repeated contact with familiar and close others and reiterated encounter that proceeds within stable, non-surprising, familiar environments. So where is that? Heaven? Ask any autistic person what their idea of an ideal society is and they will invariably describe a situation without stress and anxiety. As visions of Heaven go, this is just so incredibly unambitious, asking for so very little. But it indicates how great the problems of stress and anxiety are for autistic people.  

My expert diagnosis is that anxiety caused by problems with external relations to people and society creates an inner tension in me which in turn triggers symptoms which are so similar to a heart attack as to demand attention from me and from the medical professionals. I have no option but to sound the alarm, knowing that a succession of false alarms is sooner or later going to have the medical authorities losing patience and being much less alert in the future than they should be. This was my third call. Is it a case of three-strikes and you're out? But I need to underline here that in this instance this was my doctor's call. She was not remotely happy with my condition and she should know. 

One day, this situation may well catch me out. One day, I will experience the real thing, and neither I nor the medics will respond with appropriate speed. This being so, I need to come out of the medical mode and advance the task of social reconstruction as quickly as possible. Maybe I should raffle myself in the local paper. It is there in society where the problems and solutions lie, not in hospitals. Doctors are not even patching the problems up. There’s nothing they can do for me since the problems are not physical. The doctors and nurses are in the uncomfortable position of having to tell me that my problems are not theirs. It might seem callous, but that’s about the size of it. Hence the need for clarity in the confrontation with reality. And that indicates a need for straight-talking on my side. I don't think that the people supposed to have been helping me on AS have been helping at all. They have done their jobs and offered what is in their command to offer. I just don’t think they have much help to offer. They are offering surrogate supports and band aids, some of which may well be of value if you can do other things, but much of which are pretend solutions designed to make it look as though something is being done. Such things may, at best, trigger you in the direction of those other things you need, set you on the journey to reconnection. There is no substitute for real connection and engagement with people and the world. In the absence of that, you are doomed to an endless and pointless circularity. There is little point in going along with something because it is all that is available. If you know that something isn’t right and won’t work, then leave it alone. The effort of trying to make the unworkable work will destroy you in time, and to no end. I have long since concluded that it is best that I devise my own plan based on my own knowledge and see how far I can go with that. I would much rather face the music than go through another ordeal like this again, not to mention accepting the help of various agencies which is no help at all. The whole situation seems designed to polish people like me off.    

Get a plan and put it into effect. Any decent plan vigorously pursued is better than lots of scattered good advice trailing off into different directions at once and falling far short of what is needed.   

I left hospital with the result of ‘OK’ in my ears. ‘If you’re happy with that,’ a nurse said as I discharged myself. Medically, I have no option but to be happy with that, because I don’t think there’s anything more that doctors and nurses can do for me on this. It’s not the problem, and hence not the solution. The greatest cause for concern here is that, one day, I will be confronted with a medical problem, and either I or the medics won’t respond accordingly. As for the rest, who knows? The thing I am complaining of has no obvious redress. Putting your relation to others on a proper footing requires the cooperation of at least some of those others. I already know this. It's just that in trying to bring my knowledge to bear on others I am getting nowhere fast. That leaves me with no-one to turn to and nowhere to go. In the immortal words of Terry Collier, I’m ‘none the bloody wiser.’ I may have to be happy to accept that as my epitaph.    

Whatever Happened to the Likely Lads?: a melancholy masterpiece of a TV theme tune 

https://www.theguardian.com/global/shortcuts/2017/nov/22/whatever-happened-to-the-likely-lads-a-melancholy-masterpiece-of-a-tv-theme-tune   

Whatever Happened to The Likely Lads was my most favourite TV show of all from the moment I first saw it at the age of seven or eight, and remains so. As a lover of comedies I have many favourite shows. To this day I spend most of my TV time on YouTube watching old comedies, mainly British but the occasional US one like Bilko, Taxi, and Soap (Soap? I know ... it was very educational for a teenage boy). The Likely Lads is my favourite, my pick for the best comedy show of all time. I was just a young boy when it was first on TV in the early 1970s, but I loved it then as I love it now. The show balanced comedy and melancholy perfectly, and was most endearing in being based on characters we all knew and who in some way reminded us of ourselves. I rather fancied myself as Terry Collier, but was probably more of a Bob Ferris. My brother and I were often referred to as 'the likely lads.'  We loved the show.   

“There was sharp, witty writing, slapstick humour, it dabbled in farce – but equally, there was no mistaking the way every episode was shot through with wistfulness, nostalgia, and regret.” Boy, do I know that 'wistfulness, nostalgia, and regret.’ And the fact is that I knew it at the time. If you watch the title and closing credits as the theme tune plays you will see an image of boys playing in old terraced houses that have been demolished. We would place these scenes in our own town at the time, 'this is such-a-such street,' and 'that's such a place.' Already, before I was even 10, I was expressing nostalgia for a time and a place I never even knew. I smile wryly whenever I hear people looking back on their lives say that they have no regrets. They must be perfect! Any decision they made in their life, they say, was the right one at the time, in light of what they then knew. Which isn't answering the question at all, merely explaining what they did at the time, which is merely what we all do. We all of us make decisions that we think to be right at the time we make them. If we didn't, we would make other decisions. Obviously. The point is that those decisions are not necessarily the right ones. So answer the question: In light of what you now know to be true, would you have done things differently?  

"It is perfectly true, as the philosophers say, that life must be understood backwards. But they forget the other proposition, that it must be lived forwards." (Kierkegaard, Journals IV A 164 (1843) 

I have very many regrets regarding my life and would have done many things very differently had I known the things that I known now. That doesn’t mean that the other decisions and directions I would have taken would have worked out any better. Sometimes, the illusions I have nurtured about people and events past may well be far more reassuring than the realities that may well have unfolded had I approached them differently. And the fact is, so many things in the past were good and so many things went well, for which it is right to express gratitude rather than nurture regret. Gratitude is usually better than regret and is certainly better than resentment and bitterness. But that awareness can tend you to turning to the past for comfort, not least when you see few if any prospects for such comfort in the present let alone the future. Wistfulness, nostalgia, and regret were all there in ‘Bob and Terry’s tendency to lapse into reminiscence at the slightest provocation; in Terry’s inability to settle back into civilian life after five years in the army; and in the late Rodney Bewes’s face, which seemed to naturally arrange itself into a mournful expression.’ I’m forever reminiscing, forever calling back folk long gone, forever replaying past scenes and events. I’ve never settled anywhere except the one and only home I have ever known. And even there, I was living in retreat and refuge. And now it is gone, along with those who made it a home worth returning to.   

That wistfulness, nostalgia, and regret could be heard clearly in the music that accompanied the credits to The Likely Lads. The theme tune captures the show’s character perfectly. The lyrics have been described as ‘remorselessly downcast.’ No wonder I love the song and the show. I love the kind of melancholy that cheers and uplifts. To return to my favourite femme, Francoise Hardy, her songs and lyrics tend to be down, but they are as light as a feather as I hear them. She never weighs you down. Instead she lifts your burden by sharing the desolation. With respect to The Likely Lads, the lyrics that are turned so much to a lost past are sung by a rousing chorus which invites us all to join in with, making it clear that you are not alone. And that’s a comforting thought.     

Likely Lads theme tune 

Oh what happened to you? 

Whatever happened to me? 

What became of the people we used to be? 

Tomorrow’s almost over, today went by so fast 

It’s the only thing to look forward to the past  

There was a time when time didn’t matter, only the time of day 

And living was living in hope which would never pass away 

Well it was a Monday morning when weekend was done 

Fear was the fear of being what we had become   

You say I’m a fool in a fools paradise, let my life slip away 

Waiting with my head in the clouds, lookin for a sunny day 

Never go back you tell me, it’s the worst thing you can do 

But I must go there till I find out where it is I’m going to  

Oh what happened to you? 

Whatever happened to me? 

What became of the people we used to be?  

Dejection, camaraderie, and longing: that’s the Whatever Happened to the Likely Lads? theme in a nutshell. C’est moi, aussi. 

The most depressing part of this entire episode was not the prospect of dying. I have faced that prospect enough times now not to be overly concerned, although the feeling of losing control of your body and being in the grip of some irresistible force is certainly unnerving in the sense of helplessness you feel. But such is life. No, by far the most depressing thing about being taken to hospital and put in the hands of a busy and overworked staff concerned most of all to reduce their impossible lists was the vision that one day, maybe this day, I will die alone, with no-one around who has the faintest idea who I am, and the knowledge that there was once a time when I mattered to someone and some others. There was no-one to claim me and no-one to return to should I be given the all-clear.

It is possible that in the final hours of this day I may well have plummetted the lowest ebb I have ever reached in my life. I have hit low points before, quite a number of times too. 2007 and 2008 were probably the worst years, after the near simultaneous death of my mother and break-up with my partner. In the couple of years after I would wander far but aimlessly in the streets at night, seeing nothing but a blank, uncaring darkness in front of me. I seemed to be locked in grief. But even then I could return home to my father, however much we seemed to be on different wavelengths then, unable to share our experience of the same grief. Even then, though, I knew that I had a home and I knew how to find my way home. This time, however, for the very first time in my life, I didn’t feel as though I had a home to return to, or anyone to report back to, someone who would be pleased to see that I was still alive. I was gripped by this feeling shortly after one of the doctor’s asked me if I had someone who could give me a lift home. I had no-one. If I had stayed in the hospital, there would have been no-one visiting me. My isolation struck me as the day unfolded, as I searched for help and advice as to how I could find my way home. It struck me that I was alone. It was bad enough in 2016, when the ward sister expressed concern that I had had no visitors over Christmas. At least then I did have family members who had visited on other days. This time, however, there would be no-one, no-one to visit, no-one for me to inform, no-one to return to. I had a vision of my future demise, disappearing without trace, unknown and unlamented. It’s not that long ago when things were very different. Last month, the old family home, the place where I have lived my entire life, the place to which I always returned whenever things went wrong, as they always did, was sold. I can never go home again.

In hospital I was overcome by the feeling that I have lost my bearings. 

“Fear not that they life shall come to an end, but rather fear that it shall never have a beginning.” (Cardinal Newman).  

I’m now off to listen to Françoise Hardy. Again. She's a sad soul, but genial company for all of the accepting resignation that characterises her songs. L'Amitié is a very nice song of hers.