By Clare Smith
What makes us human?
Autistic people already know that one of the enduring myths about us is that we don’t do empathy. That we don’t get how others are feeling. That we don’t even get how we’re feeling.
But loads of us can. In fact, many of us have no filter for emotions, so we’re hit regularly by tsunamis of feelings. Where other people get a tad nervous, we’re breathless with anxiety. While someone else might be irritated, we accelerate nought-to-60 angry in the time it takes to blink. And every time, we’re taken by surprise, helpless and bewildered.
Coming down from these storms takes so much longer than others. It takes me a good two days to come back to myself – and it really does seem like composing myself, remaking me into the person I used to be before the onslaught, assembling the bits and pieces of my mind, the stuff that makes me who I am. Because of course I also have poor central coherence, that other element of autism which left me feeling I was a fake person decades before I got diagnosed.
That didn’t happen till I was 57, just six years ago. So I’m still learning. One of the shocks that’s reverberated through me since then is the discovery that my writing has spoken of autistic themes for more than forty years. I just didn’t know that’s what it was.
Decades before I was diagnosed, I was lamenting feeling alien in a strange world, lonely and friendless. I was brilliant at my job, considered very authoritative, but I wasn’t liked: the more right I was the less they liked me. I had found a niche in a large organisation which, once I’d proved myself, protected me (I can see now) from the worst attacks. You could even say I flourished for a quarter century. But my employer changed and I didn’t. I became too high-maintenance and was ‘let go’. I couldn’t make it anywhere else – relationship breakdowns dogged my every misstep and I quickly became unemployable.
But that led to asking what was wrong with me.
I’m sorry, I know it’s not right to describe us as that, but that’s how I framed it at the time: something was out of kilter, something felt wrong. It brought the answer eventually (but only after a fairly ignorant psychiatrist diagnosed antisocial personality disorder first – how ordinary my story is!) and I’m still working my way through the issues many of you who’ve been diagnosed young will have already come to terms with.
Recently I came across a new word that apparently applies to many of us though – alexithymia. Some researchers now think that the autistic people who’ve been told they don’t have or recognise emotions in fact have two separate conditions – autism and alexithymia. It’s the alexithymia that is the inability (or near inability) to identify one’s own emotions. The jury’s still out on whether alexithymic people actually have emotions – can you be said to ‘have’ an emotion if you don’t experience it? If you can’t see and don’t recognise that you’re experiencing it, are you, in fact experiencing it?
Yet this has profound consequences. Take away a person’s emotions and they can’t connect. You can’t describe the human condition without using emotion-laden terms. You can’t even describe an individual person – are they happy-go-lucky? Sad? Grumpy? In the non-autistic world, their emotions are what make them human.
My husband became alexithymic after a stroke, the brain damage apparently cutting off his ability to understand, for instance, that his racing heart, going pale, shouting and gesticulating were symptoms of being angry: “just a bit of theatre” he later said. But he’s never been a cruel man, so that didn’t wash.
To show solidarity I completed the test as well and scored high enough to be considered alexithymic too.
But I’m one of the emotion-ridden autistic people. Confused? Me too.
Still, as an old colleague used to say of people he thought were stupid – “There we are then” (try it as an acronym). I don’t mean researchers are stupid, I just mean they’ve a long way to go to explaining autism. And alexithymia.
All this is by way of an introduction to a poem I wrote at the start of November 2020. It’s in the here and now – coronavirus, Covid-19, lockdown, and the everyday, mundane effort just to get by. And the sad response of those too frightened to recognise how scared they are, how scared we all are.
The local Tradesman’s Take on Life
I am left quivering by how fast fear stunned me,
Left me shivering there, a shock of ricochets,
Rendering me floppy as a shaken baby,
So that I staggered in the rush that betrays
How he dazed me, how he took me
To the brink, to collapse, to shatter.
He’d come into my house, my space
And spoke his ignorant denial.
Taken by surprise I’d demanded, “Where’s your mask?”
A year-ago nonsense question, but now our daily trial.
Now carrying the weight of numbers for our race.
The R number. So many every day. The ur number.
“It’s all a myth” he said. “They were ill already.”
Satisfied, for he’d quoted some other denier,
He sat back on his heels and shrugged.
In eight slight words, he’d set a fire
That ripped out everything – the steady
Effort, the daily pain, the grief, the loss.
In that moment I almost wished the plague
On him. And, shamed, at once denied the thought,
But knew that not so much divided us.
Instead I found the only words that brought
Me back: “How could you say that?” Too vague
To bridge the gulf that joined us.
For weakness had washed out my mind.
I was strumming with panic – was it here in my hall?
In my home? In my space? “Get out of my house!”
The need to expel him, and what could befall,
To repel his scorn, and to crawl blind
Into safety. My only thought: I am scared.
I was born to Quaker parents who moved to Northern Ireland for work when I was six months old in 1957. I’m the second of six children. We were subjected to terrorist threats from both side of the religious divide during The Troubles because both my parents got involved in the Peace Movement.
My father was self-educated and became first a manager at a factory in Ulster and then, when I was 17, Director General of Oxfam in Oxford.
I won a place to read Politics, Philosophy & Economics at Oxford University. I’d got married while studying, and divorced amicably four years later.
After a post-graduate diploma in Journalism my first job was with an independent radio station, Plymouth Sound. Then I moved to the BBC in Leeds. Initially I worked in radio, then TV, moving from Leeds to Manchester, Birmingham and London. Local and regional news first, then, briefly, for Newsnight.
The boyfriend I’d lived with for several years moved to Dubai in the Middle East shortly after we broke up. But we stayed in touch and when I became ill with hyperthyroidism and was made redundant, he invited me to join him for R&R. Reader, I married him.
We moved back to the UK two years later (me as BBC North West’s Health Correspondent, Ralph as a news producer with Sky) and we started a family – two girls Jennifer and Ally, now 25 & 21.
I had a heart attack during a disciplinary hearing after an NHS Trust complained about a story I’d covered. The disciplinary disappeared, but a year later I was ‘let go’ by the BBC.
I was awarded an Honorary Fellowship by the then Bolton University “in recognition of her outstanding contribution to the media and to the community”, primarily for my work on the Alder Hey Organ Retention Scandal. I also covered the Harold Shipman mass murderer story – the film of him in that green gilet that gets rolled out every time a documentary about him runs is mine.
After the BBC I worked as a university lecturer, but lost three jobs in four years (Bournemouth, Salford and Teesside), spiralled into depression and sought diagnosis in 2012.
I was told I had Anti-social Personality Disorder. It took another year to get it changed to Asperger’s. Meanwhile, my new GP realised my ‘heart attack’ (for which I’d been hospitalised twice more!) had been anxiety-triggered acid reflux.
Our youngest, Ally, was diagnosed with autism the same day as me, 25th April 2020.
Four months later we moved to Norfolk for a fresh start. A couple of years on I briefly got paid work – as assistant shop manager for the Sue Ryder organisation in Cromer. I was sacked nine months later for ‘communications problems’ and took them to a disability Employment Tribunal with no legal support. They settled out of court, paying me enough to keep us going a couple of years, but more importantly, accepting that autism discrimination had played a key part in the matter.
For three years I volunteered – initially as a governor with our local mental health Trust and in my local RSPCA shop. I also set up a Facebook group for autistic people called the Norfolk Asperger/Autism Network (NAAN) which by Lockdown had more than 250 members, making us the largest such group in the county and the only one run for autistic people by autistic people. Our best achievement was successfully lobbying Norfolk County Council (NCC) to increase funding for the local diagnosis service by 50%. In Lockdown I had to withdraw from all but the most minimal online activities and left NAAN.
I had been elected co-chair of the Norfolk Autism Partnership Board when it was inaugurated in 2017 but the discrimination and prejudice I met from NCC officials led me to resign two years later.
My husband, Ralph, now 73 and not autistic, had to stop work after he had a stroke in 2009 and instead became the main child-carer. My parental/sibling family rejected me when I was diagnosed, except for my youngest sister who remains in touch.
We have two cats, two allotments and a garden.