What I’ve learned in the year 2020

Reflections and resolutions after lockdown

2020 wasn’t quite the year I expected. Nothing unusual there, you might say. In the year of the coronavirus epidemic, I think that’s the case for most people.

In my case, I was planning to mark my twenty years of giving talks about my life as an autistic person. This hasn’t happened, but a lot else has. And much that has will change the way I tell that very story in the future.

In February I was asked by the psychologist, lecturer and researcher Dr Lucy Livingston to contribute a few paragraphs to an article on compensatory strategies in autism, for publication in SEN magazine. This interesting task really set me thinking, and I realised just how much I have created an outward persona to mask my autism and cope with the world. Over the decades, so adeptly has this become blended into my everyday life that I have almost ceased to notice it. Nor, despite many rumbling warning signs, have I fully acknowledged the toll it was taking on my wellbeing. The year 2020 has given me the chance to see this in context, and to take stock with an eye to the future.

As an obsessively active, energetic professional who likes people and enjoys working hard to take my place in society, I have spent the last 20 years in a whirl of frenetic activity. I’ve given concerts, taught, recorded, travelled – all within a complex web of subtle comfort zones I’ve created to allow myself a productive, navigable marriage between my autistic world and the environment outside. To the casual observer this presents a veneer of normality, albeit often a somewhat eccentric one. My compensatory strategies have been my lifeline, and I’ve studied, analysed, worried about and obsessed over the complex and ever-shifting variables of social interaction and human behaviour. I’ve copied, I’ve acted, I’ve worked tirelessly to mask my deficiencies, to blend in, to swim with the tide and to survive. For the most part, I’ve done this pretty successfully, and all but a few of my closer acquaintances and friends have been almost entirely convinced.  

The big difference between my compensatory masking and the outward presentation of the average neurotypical is such a subtle one as to escape the attention of all but the most sensitive or experienced observer. A lifetime of “cultivating a front” has taught me how to get by, and to do the job I do best: charging ahead, and swimming rather than sinking. As a child, I quickly learned, subconsciously before I ever thought about it, that this was the only way to survive. As I grew older, I rationalised that it would be my only hope if I wanted to flourish.

Many people think that because I present as a highly functional, cheerful and communicative individual, I must “only” be “very mildly” autistic. Rather, to quote an apposite phrase, the onlooker experiences “my” autism mildly, but I don’t. The unfortunate result is that if the onlooker registers only a mild manifestation, the expectations they have of the autistic person are vastly magnified. The more successful the compensatory strategies and the more believable the “masking”, the greater the pressures unconsciously exerted by others on a daily basis. These accumulate over time, and they take a terrific toll.

This is not to suggest that my interaction with others is insincere or fake. Quite the reverse is true. Contrary to an oft-held one-dimensional stereotype of autistic people, I love people, I love sharing time with friends, and I’m extremely interested in others. I relish exchanges with friends and acquaintances, and I make a point of enjoying life to the full. I also feel a great deal of empathy and I pick up on a wide range of emotions in others. Often indeed, the problem is one of knowing when to turn that empathic, emotional radar off before I become overwhelmed and exhausted. Once I empathise and engage, I then have to try to identify unspoken and unwritten social and hierarchical rules in dealing with my fellow human beings. Without a filter, the emotional input can become unbearably vivid, all-consuming and confusing, but I’m one of those autistic people who lacks an inbuilt “off” switch, and navigating this incoming tide of overwhelming input can be confusing and sometimes devastating.

Huge energy has gone into navigating unhelpful thought patterns, cul-de-sacs of obsessive and extreme anxiety. And I’ve waged a lifelong battle with the bombardment of distressing sensory stimulation. I’ve learned to layer my thought processes, to act out my day-to-day persona as an almost automatic, scripted veneer, whilst trying to grapple with torrents of discomfort underneath. This can be trying to filter out a scratchy sensation from clothing, the nausea of a temperature change or a strong taste or smell, or the battle to unscramble a jumble of confusion about what I’ve said or done, and how the reactions of others make me worry that it might have been inappropriate or caused offence. My overbearing terrifying awareness is that, much as I’ve tried to learn from experience and observation and to “get it right” in social and interpersonal contexts, I’ve blundered through life and frequently failed. And I’m often none the wiser as to why, or how I could have done things differently. It’s all very well learning from a situation that went slightly – or very – wrong, but identical knowledge cannot be blindly applied to another situation. And such varying situations are so endlessly subtle as to defy any uniform plan of action. I try very hard, but others seem to assess and navigate many of them with an innate elegance and grace, whilst I can only try to apply a formula and hope for the best.

I’ve learned only too well – and through a great deal of pain, confusion and frustration - that there’s a general mindset and logic, a group mentality if you will, in which most of my fellow humans seem to share, or which they at least can log into and understand, but which often evades me. Many social and behavioural subtleties represent a minefield, and my life has been punctuated by constant stabs at guessing and hoping for the best whilst waiting for the fallout. Sometimes I’ve pulled it off, but many other times I’ve had to brace myself with the armour to carry on, act unmoved and competent, and assume the mask once more. This cluelessness has meant I’ve often felt extremely lost, with a blind panic chilling me to the core, and I’ve sometimes played a dangerous game as I diced with the neurotypical world, an intelligent autistic person playing a game of pretend. I can’t avoid the analogy of my desperately yearning to explore and discover this incredible world of ours, to positively connect and to swim rather than sink in that world, but at the same time viewing it as if behind a glass screen. I can taste the joy in life, I can feel the dynamics in the social interaction and connection I see around me, but my own processing, logic and judgement doesn’t help me achieve them for myself. That’s where coping strategies and masking come in.

In my teens and student years, my career was my priority. I retreated into my inner autistic world, and my attempts to emerge and engage were stressful and frequently traumatic. Trying to tiptoe between the logical, ordered, literal world of my inner thoughts and perceptions, and the ever-shifting, volatile precipice of the ways “other people” made sense of things brought me anxiety and sometimes despair. Conflicts between irreconcilable logic and value systems were the result, and these eroded my self-worth. Retreating into the happy space of my own thoughts usually turned out to be the less painful option. At 21, a breakdown and my autism diagnosis brought me a greater self-awareness and understanding, but I’d developed my career at the expense of subtler personal growth. I emerged in my early twenties, a young professional - highly trained, intellectually inquisitive and with a surface polish – but underneath the veneer I was clueless on an interpersonal level. Social hierarchies were an illogical mystery to me, and I generally chose to ignore what I couldn’t understand. Having kept my friendships superficial, I found myself trying afresh – and struggling – to engage with friendships, relationships and contemporaries. In my twenties I was to make many of the mistakes - and learn the lessons – that my peers had navigated much earlier. I’d been imprisoned in a terrified cage of feeling worthless, a substandard and faulty human being. Others were valid people, I felt, whilst I was undeniably invalid. Interaction had been based on the world of my inner imaginative fire and creativity, a veneer of outer competence carefully contrived. My learned modus operandi was to observe and analyse how others functioned and interacted successfully, blindly copying what seemed to work rather than daring to allow anything to resonate at a deeper level. I’d never explored friendships or relationships that were truly authentic or self revealing. This was a path I now tried to navigate, but with the cluelessness of the newly-hatched chick, wide-eyed and clumsy. Some of the friendships and relationships that followed, though deeply felt and pursued with a naïve honesty, puzzled and upset me as much as they undeniably helped me to grow up. Rather than floating apart from the world, I tried at last to take a deep breath and fit in, but with a grinding of gears as my autistic mind collided with the illogical cut-and-thrust of the neurotypical world. I was lucky to encounter some beautiful people, tender souls who supported and cared for me, and I didn’t fall into an abyss as jagged as might so easily have risen up to devour me. And I battled with my mental health during my twenties and early thirties, a time of raw emotional ups and downs.

And as I get older I feel more secure in my own skin, and can rest serenely in my own corner rather than trying to fight the world at every moment. It doesn’t matter if I can’t always fit in, if I don’t understand the illogicality, herding mentality and elusive “uniform” of others. I no longer socialise to the hilt simply to prove that I’m a worthy human being, nor to justify my right to exist. And I try to be honest about my frailties and terrors.

Episodes of burnout and exhaustion, entire physical and emotional collapse, have punctuated the last few years – during which my professional career has flourished in new directions. I’ve become a busy – and moderately successful - recording artist, working in a sphere that suits me perfectly. Working alone and privately, away from the chaos and unpredictability of more social working settings, fits me like the proverbial glove. My topics of research interest give me a lifeline and an absorbing safe space. My lifelong obsessive compulsive disorder has naturally continued to rumble along as a constant companion – but that will forever be the case, and I implement strategies to try to deal with it more effectively. Nonetheless it takes a huge toll, and it exhausts and confuses me. My busy career as a performer and teacher places constant pressures which often build up against the backdrop of constant and corrosive anxiety.

In recent years, my life seems to have gone in cycles, with burnout driving me to the edge every two or three months. And despite many highs, there have been plenty of lows too. But, as befits the supreme actor I’ve had to become, most of these have been hidden from the observing public.

This has all changed in 2020. Since the pandemic hit in March my day to day lifestyle has been transformed. On the positive side, I’ve practised the piano more than I’ve had time to do for many years. I’ve made several recordings, into which I was able to pour more love and care than might have been possible given my hectic schedule in normal times. I’ve spent many happy hours with my elderly mother, and I’ve enjoyed slowing down enough to be able to tend some of those practical skills which often become buried under the weight of work commitments. A year off from my usual 30 thousand miles of driving – down to less than 10 this year – has allowed me time and space to reconnect with my local environment. And I’m fortunate to have stayed healthy, employed and to have remained – so far – unaffected by the heartache and strain inflicted on so many by this dastardly pandemic.

Many have remarked on silver linings, the time and space to reconnect and reflect. But most have suffered more than I from being so detached from friends and family. The agony of months of isolation have bitten deep for them. I’m speaking purely for myself in what I am about to say, and I recognise that many autistic people have experienced extra heartache and confusion this year. I have often made it clear that autistic people are individuals and vary hugely, and this firmly applies here. By the same token, many who are not autistic will find that my words resonate with them too.

For me, it has been a tremendous relief to step back from the world. After many years of immense effort keeping up with the world, fitting in with society, playing a role of competence, fluency and confidence and “pretending to be normal”, I’ve retreated from society. For the first time in two decades, I’ve taken a break from people. For the first time, with those connections necessarily severed and obligations lifted, I have truly felt the toll things have taken, and I’ve been able to see what has cost me most dearly. Lockdown has been a barometer of where my energies have been most painfully expended.

As pressures, demands and commitments melted away, I learned what was really important. I found out what I could live without and I learned what I would be best to live without. I captured a peace of mind and a contentment I hadn’t felt for years, and I recoiled in horror from the very prospect of doing some of the things I’d taken from granted months earlier.

It may sound deeply offensive, but the things I breathed a sigh of relief to be missing were generally things involving lots of people. I love people, I really do, but I find them constantly baffling and exhausting, especially en masse. And I’m endlessly mentally replaying situations, conversations……did I say the right thing, what did the other person say, what did they mean…. Much of this has evaporated, as the sheer volume of social pressure and expectation has melted away.

Although I can cope reasonably well with a certain amount of mixing and have functioned very positively in a full life, it’s the sheer extent and relentlessness of social demands that ground me down in the pre-lockdown world. My fastidiously learned, carefully tended social skills worked well, but only for so long. Here’s the rub: my camouflage has fully convinced the world that it represents the real me, tough and socially adept. So the world takes my disguise at face value and heaps one pressure and expectation after another upon me. A cascade of burnouts and meltdowns is the inevitable price I pay, and at 43 years old I’m growing tired of all that. I want my social time, my friendships and my relationships to really count. I want them to be entirely real, vulnerable where necessary, and to reveal and celebrate the fragile reality and confusion of my autistic identity rather than a carefully contrived façade of competence and sophistication. I want to reclaim my own needs, and not to be simply a servant to what I have come to believe society wants or expects me to be.

Is it a coincidence that I now haven’t experienced a phase of autistic burnout for many months? I haven’t taken to my bed in emotionally spent exhaustion, unable to stand without feeling nauseous and dizzy, unable to think clearly, string a sentence together, fight my OCD or navigate emotional and social confusion. Within the limitations of the year 2020, I have enjoyed the smaller amount I have been able to do. And there are lessons for me to learn from this in charting my future course, in a way that will make life saner, happier and more productive for me and for those around me. 

Early in the pandemic I was vaguely amused by the irony of one aspect of it all. My OCD makes me constantly frightened by the prospect of contamination and germs. I’m always sanitising, forever disinfecting, constantly washing my hands. I’d sit in a restaurant suspecting that everyone thought I was mad to be spraying my hands, and they really would think I was crazy because I couldn’t bear how close people came to me. Now, at long last, I’m leading the trend, and the neurotypical world has joined mine. The reasons may be different, but I feel curiously validated.  

In times of relaxed restrictions, I’ve taken tentative steps towards my former normality, and I’ve realised why I was so much more relaxed in lockdown. Stepping back out into the world, I’ve been submerged in a sea of anxieties as I rose to do battle with the world again. Every step taken, every face encountered and every puzzle negotiated has brought with it a web of renewed analysis, as my mind grapples with its unpredictable surroundings. My OCD paralyses me with fear and with futile analytical cul-de-sacs of despair as I reason and wrestle afresh with the minutiae of everyday interpersonal exchanges and the incalculable perceptions and motivations of others. Oh how much more carefree it was in lockdown, cocooned and insulated from the fear of expectation, misunderstanding and judgement.

How, then, do I look ahead? And what can I learn? I’ve missed people, of course, and I’ve missed so much that was vital and bracing in my life. Whilst I’ve noted that my stress levels are down, I’ve nonetheless mourned the joys and the challenges of my colourful patchwork life. I’ve missed my friends, if not the hecticness of my social whirl; and I’ve missed the sense of adventure I relish as I travel around the country. I haven’t missed the exhaustion and the saturation as everything becomes too much, and as one demand of me is heaped upon another. I haven’t missed the exhausted feeling of intense sickness, hopeless depression and panicked mental collapse as it all becomes too much.

I need to accept that, whilst having social needs and enjoying friendships, I’m also autistic and prone to overload. I must come to terms with the fact that many of my social skills are hard-won, endlessly studied and therefore wear me out. And I must plan my weeks and months with care and with self-respect. I’m at a stage in my life where I more easily feel a sense of self-worth than previously, as I’ve achieved enough in my career to help me to be able to reason that I can’t be entirely useless. If I can find and harness a sense of worth as a human being (I don’t know why these two issues are connected, but for me they are) it’s easier find the strength to relax and listen to my own needs.

It feels as though I’ve been studying across the years for a research degree into human behaviour and social skills, desperately trying to learn how to be neurotypical and to prove it. My task now is to stop playing that role and trying to show how competent I am, and simply to enjoy the fruits of what I’ve been striving for across the past four decades. It’s a privilege to have a fulfilling career and many wonderful friends, who tolerate my mistakes and quirks and stand by me nonetheless. I have plenty to live for, and I must learn not to be afraid of showing and embracing weakness, not just admitting it. My challenge now is to authentically resonate with my ongoing life experiences in calm, honest and vulnerable acceptance, humour and humility. And although all autistic people are complete individuals - and I don't for one moment claim or wish to speak for others - I've always felt a duty to share my story, for what it's worth. As I develop, grow and learn from recent events, perhaps the story I tell will be a more ruthlessly honest, comprehensively nuanced and self-aware expression of my own autistic journey.