Looking For Normal

By Steve Slavin

"AN AUTISTIC BOY WHO BEAT THE ODDS."

 

Looking For Normal is the memoir of author, musician and filmmaker, Steve Slavin. His obsession with music, at an early age, led to a long career in the creative arts, albeit one plagued by clinical depression and the symptoms of a condition he was unaware of until 2008.

In recounting the 48 years that led to his autism diagnosis, this darkly humorous memoir will inform and inspire anyone with an interest in mental health and autism. But more than this, it is the story of an "emotionally disturbed child, without a future" who, against the backdrop of low expectation, became an ambitious, independent adult, with a wife, daughters, and a career stifled by the long shadow of his childhood dysfunction.

 

"A wonderful insight into an extraordinary life." - Peter Holmes Ph.D.

 

"Insightful, inspiring, informative and entertaining. Looking For Normal is not just about overcoming the adversities that life throws at you on a regular basis. It is also about someone's journey of accepting, embracing and celebrating everything that comes with having autism." - Dr RF (Senior practitioner Educational Psychologist).

• Language: English
• Publisher: Steve Slavin
• Release date: Apr 3, 2023
• ISBN: 9781393274568

Steve Slavin

Steve Slavin is the author of Looking For Normal, and Timothy Blossom - Officially Brilliant! Looking For Normal recounts a life spent in the shadow of his childhood emotional dysfunction, and later through a relatively successful career as a musician and filmmaker. The book culminates in his surprise autism diagnosis at forty-eight years of age. Timothy Blossom - Officially Brilliant, is about a twelve-year-old boy coming to terms with an autism diagnosis. It is the first in a series in which Timothy Blossom attempts to make sense of the world, in his own unique way. The Timothy Blossom books are heartwarming and insightful: relatable to children who think differently about life, and enlightening for their parents and educators. Contact Steve at: [e-mail]

Book preview

One

TELLING DAD

There is something about a crisis that allows uncommon truth to rise above the mundanity of normal discourse, and there is no crisis greater than the pending death of a loved one.

September 2008

‘But you can’t be autistic. Look at all the amazing things you’ve achieved in your career... in your life. I mean… it’s just not possible.’

I sat opposite my disbelieving father in the hospital cafe, just a short walk from where Mum lay comatose and in her final days.

‘Well, it’s like this—’ I continued to explain awkwardly, ‘autism happens on a kind of spectrum. It means that I get lost a lot when I’m driving, and I hate being in noisy places.’

‘But doesn’t everyone get lost sometimes?’ Dad replied.

‘Well… yes, of course,’ I answered, floundering in my attempt to overlay a medical slant on anecdotes that appeared so common and unremarkable.

‘Look, Dad… autism is a complex thing. I’m not exactly sure what it all means yet, or even how to describe it. I just know that I have it. My psychologist has done all the tests and confirmed everything in writing.’

It had, in fact, been three months since Dr Cartwright delivered her game-changing clinical conclusion: the one I had not shared with Dad until that afternoon in late September. Until then, I had avoided discussing with him my problematic childhood. It was a subject I’d always regarded as being strictly off-limits, taboo, and definitely not up for debate. But now, as the days shortened into Mum’s final autumn, it was time to put my embarrassment aside and grudgingly admit that it was official: I was a high-functioning autistic adult.

We finished our coffee in silence; my thoughts draped in the fading light of a rain-splattered window.

‘We’re closing in five minutes,’ the waitress shouted abruptly, without looking up. She was loading used cutlery and empty coffee cups onto a stainless steel trolly. It was then I realised that regardless of one’s personal circumstances, tables still needed to be cleaned, and floors swept of the day's discarded remains. Somehow life just carries on.

‘Come on, Dad,’ I said, half-jokingly, ‘we’d better go before she throws us out!’

We made our way along the corridor; to the ward where Mum lay motionless, somewhere in that unreachable place between sleep and a deeper unconsciousness.

‘Goodnight Mum,’ I whispered, leaving a kiss on her forehead. ‘We’ve got to go now. I’ll come and see you again tomorrow.’

At forty-eight years of age, I was about to lose a mother, but in my father, gain a surprisingly empathetic new friend.

Two

FROM THE BEGINNING

‘From the moment you were born, all you did was cry. No one knew what was wrong with you. We didn’t think you had a future.’

—My mother.

‘A m I normal?’ I asked Mum when I was nine. Until then, nothing I had experienced suggested I was. All the evidence was there in black-and-white; scrawled by hand in reams of doctor's notes. Before I’d reached double figures I'd practically done it all: Lithium, Valium, Mogadon and Librium; speech therapy, hospital admissions, and countless hours of psychological assessment. Even ECT (Electroconvulsive Therapy) had been considered as a last-ditch attempt to snap me out of my emotional dysfunction.

In 2008, just before my autism diagnosis, I received a brown envelope containing fifty-two pages of hospital notes dating back to the spring of 1959, shortly after my birth. It was like deciphering newly discovered hieroglyphics buried deep for thousands of years; encouraging the past to reveal its secrets so that I could better understand my present. Words and phrases such as ‘abnormal’ and ‘highly disturbed’ were scattered liberally amongst the text, as were recommendations that I should be sent to an ‘Institution for Maladjusted Boys’. The language used may have changed since then, but the treatment, other than a wider variety of medication, has not. I was taking Lithium at the age of twelve, and at fifty-eight (at the time of writing), that naturally occurring sledgehammer of the mind, is again, my prescribed drug of choice. How naïve was I to believe that those doctors had all the answers?

Early Years

Home in 1959 was a two-bedroom maisonette in West London—Ealing Broadway, to be precise. And for this humble abode, Dad paid the hefty sum of £1800; a fair-sized mortgage when your weekly wage is £9 with overtime. Shortly after moving in, the surrounding area was flattened to make way for a new underpass designed to carry the ever-increasing traffic from the suburbs into Central London. Mum was convinced that the heavy construction noise was responsible for my extreme childhood anxiety. Two years later, she’d thought my sister’s somewhat protracted birth was caused by an exploding delivery truck a few streets away. Whether Mum’s theories were science fact or science fiction is unclear. There was, however, little doubt that she was a woman driven by paranormal-tinged instinct. As indicated by one of her many mystical anecdotes.

‘I knew you were going to be a boy,’ she often reminded me.

Apparently, shortly before I was born, a man in a brown pinstripe suit and trilby hat had come to her in a dream. He told her she’d give birth to a male child, and that the child should be named after him. Mum described the mysterious man in her dream to her mother, Sadie, who said it was her dead brother, Sam. He was an uncle Mum had never met. In response to her supernatural visitor’s request, Mum took the letter S from his name and called me Steven. Given a choice, I would have preferred something a little more biblical that reflected my Jewish heritage; Saul, perhaps, or Solomon, or even Shlomo. But the thing I hate most about my name, Steven Slavin, is that I find it almost impossible to pronounce. There are simply too many S’s, V’s and N’s. If Mum had known in advance that she’d produce a child with such significant challenges in the speech and language department, she may have chosen a name that was easier for me to roll off the tongue.

But getting back to the spring of 1959, it soon became clear that Mum wasn’t coping well with her new child. So together, we were placed in a mother and baby unit at London’s Great Ormond Street Hospital for Sick Children, as it was called at the time. This would provide some much-needed respite for Mum, and allow the doctors to investigate my infantile anxiety more thoroughly.

I have an unusual memory. Five minutes ago is a mystery, yet I can remember vividly things from around the age of four. I remember the chronic stomach pain that forced me to writhe around in agony on my bedroom floor. I remember the tantrums, and being terrified of just about everything and everyone. And I remember those weekly trips to a clinic where I’d move toys around in a sandpit, observed by a man in a tweed jacket. The man was called a speech therapist and Mum said that he was going to help me speak. I wasn’t exactly sure what speaking meant at the time, but apparently, it wasn’t something I did until I was six. I did, however, escape the retarded label, mainly because my reading and writing ability was so advanced for my age. There was certainly nothing wrong with me physically, either. I was a fast runner; excellent with both a football and a cricket bat. The frustrating truth was that no one could define the cause of my social and emotional disconnect. Eventually, when I was twelve, my doctor would consider a diagnosis of childhood schizophrenia. This was not because I was hearing voices or displaying signs of psychosis, but because it was common practice to diagnose children—now considered autistic—with schizophrenia.

I have met several autistic adults of my generation who were misdiagnosed with schizophrenia in the 1960s. Like me, they were medicated with Lithium, but unlike me, spent years in mental institutions until it was discovered, decades later, that they were, in fact, autistic.

In 1968, the diagnostic guidelines used by doctors to evaluate their patients—the DSM 2—defines schizophrenia as:

Atypical and withdrawn behaviour, failure to develop an identity separate from the mother, general unevenness, gross immaturity and inadequacy in development.

The language used in the DSM 2 may hark back to the dark age of child psychiatry, but it was all that science could offer at the time. It’s worth noting that autism, and later, Asperger syndrome, were not added to the DSM guidelines until the 1980s and 1990s, respectively.

Mum had also been a victim of the era’s flawed thinking. In around 1950, psychiatrist Leo Kanner coined the term Refrigerator Mother. He concluded that a child’s inability to develop typical social and emotional skills was due to a lack of maternal warmth. By the late 1960s, this idea was falling out of favour with doctors. The stigma, however, remained. I expect there was an entire generation of autism mothers who carried a heavy burden of guilt to their grave; convinced they were wholly responsible for their child’s developmental delay.

Thankfully, Leo Kanner’s Refrigerator Mother theory has long been abandoned to the overflowing waste bin of archaic clinical thinking.

Three

BACKSTORY

To provide some context for my story, I have decided to share with you a brief family history. After all, I may have autism, but I am also a product of genetics and environment.

Our family fled Lithuania and Ukraine at the turn of the twentieth century. Some sailed to America, and others to England. In the oldest of Jewish traditions, they’d left their homes to escape a murderous regime hell-bent on their extermination. Those who stayed and survived the pogroms, the ghettos, and the gulags, would later perish at the hands of the Nazis. A record of their fate is evidenced in the archives of Jerusalem’s Yad Vashem Holocaust Memorial Centre. I’ve spent many-a-morbid hour typing family names into their online database, to see who was murdered, and who was not. It’s a grizzly pastime that plays directly into my tendency towards obsessive interests. The records do not make for pleasant reading.

It is, by necessity, that people of this particular faith have developed, within their DNA, the art of survival. This remarkable genetic asset takes zero space in a hastily packed suitcase, and provides the determination to not only survive, but flourish wherever they land. The metaphorical suitcase to which I refer, is one that many Jews keep by the front door—sometimes literally.

Dad did not, however, and by his own admission, inherit the head for business, typical of his enterprising Jewish contemporaries. He speaks openly about his dyslexia and being a slow learner at school. But whatever he may have lacked academically, he more than made up for with a ferocious work ethic. Before becoming a London Cabbie in the early 1970s, he worked in the Schmatte (Yiddish) business as a machinist in a clothing factory. But even with Dad working around the clock, money was so tight that by the end of each month, supper was often a few slices of cheap white bread smeared with strawberry jam.

Mum also had her hands full; with me, my younger sister, and the house. In these tasks, she excelled. Our house was never less than spotless, as was my meagre selection of clothes; often gifts from grandmother, Sadie.

I can’t deny that Mum did her best in difficult financial circumstances, but I often felt that something was missing from our relationship. Something similar, perhaps, to the ‘cold distance’ described by psychiatrist Leo Kanner. It was a distance that kept me feeling separate and alone. It was always the stuff Mum didn’t say that bothered me the most. Her eyes would dart from one thought to the next, never transforming into words or visible emotion. I wanted her to pick me up and say, ‘don’t worry, Son, I’ll help you get through this. Everything’s going to be okay.’ But there were no reassuring hugs. Only words that rang hollow, like the empty condolences of a politician after a disaster of some kind. I do not, however, wish to give the impression that Mum was anything less than devoted to the task of motherhood. But in the light of my autism diagnosis, I now wonder if she too suffered from the cognitive and emotional disconnect that is my inheritance.

And speaking of a predisposition to such things, I am not the first in the family to have been taken to the brink by mental illness. Several close family members have suffered bouts of depression and other mental health conditions requiring hospitalisation. I often wonder if three and a half thousand years of persecution have implanted, deep within our Jewish DNA, a kind of spiritual scar that cannot be healed by pills and chicken soup alone. A psychologist might argue against this somewhat metaphysical point of view, but I am more than willing to consider it on historical grounds alone. I am reminded of the old Jewish joke: ‘We’re God’s chosen people? Can’t he choose someone else for a change…?’

Dad’s approach to my childhood emotional instability was often sterner than Mum’s.

‘Come on now, Steven, snap out of it,’ he’d say, as though I could simply flick a switch in my brain and instantly restore my mood to one of calm normality. But then, I suppose in 1960s Britain, ‘snapping out of it, and just getting on with it’ was what people generally did. My childhood straddled awkwardly the stoicism of a post-war generation, and London’s swinging youth culture: a culture inspired by The Beatles, The Rolling Stones, Twiggy, and Mary Quant. For the trendy young things of Kings Road and Carnaby Street, it may have been the dawning of the Age of Aquarius, but for those resting in the quiet conservative shallows of leafy suburbia, life carried on the way it always had; with a stiff-upper-lip and an equally stiff broom to sweep away any uncomfortable truths beneath one’s brown and beige carpet.

In those days, one did not speak publicly about illnesses of the mind. Especially not in Grasmere Avenue, where it was practically impossible to contain a rumour once it had leaked beyond one’s four walls. Social media, 1960s style, was chatter over the garden fence. The best way to spread a rumour—according to Mum—was to tell Mrs Whittle, next door, a secret.

‘That Slavin boy… he’s not quite right, you know. If he doesn’t pull himself together soon, they’ll lock him away, just like they did with that Johnson boy a few years ago.’ Instantly, Mrs Whittle’s comments would go viral; spreading like judgemental wildfire from one end of the Avenue to the other.

‘Is Steven poorly… Mrs Slavin? Is that why he’s off school again? I hear he’s not been coping well,’ Mrs Jenkins from number 48 would ask.

‘Yes, but he’s on the mend now,’ Mum would fire back irritably. She had long run out of plausible excuses to explain away my frequent absences from school. She was not about to discuss her son’s emotional difficulties at the supermarket checkout with someone she barely knew. ‘If I wanted everyone to know our business, I’d put an advert in the Wembley Gazette!’ Mum would mutter defiantly, bagging her modest pile of groceries. Secretly, she was probably thinking how embarrassing it would be if word got out that her son had just been described as ‘maladjusted and profoundly disturbed’ by a psychiatrist at Great Ormond Street Hospital. After all, who would want their child to be categorised by the locals as being just like Geoffrey? The scary ‘retarded’ man who walks past the house each day flapping his hands and talking to himself; always ten steps behind his bedraggled mother. People would cross the road when they saw Geoffrey coming along.

‘That man should be in a home with all the others like him. I mean… he could be dangerous,’ they’d say.

Yet, I remember feeling an inexplicable empathy towards Geoffrey. As though we were cut from the same piece of strange cloth that would forever mark us out as being different, deficient, and broken. And although I had no understanding of why Geoffrey was the way he was, I considered myself to be a kind of watered-down version of him—a sort of Geoffrey lite. A version that would be forced to interact with the world in a way that he could not. My brand of autism may not be one exacerbated by global intellectual disability, but don’t be fooled. The higher-functioning variety has at times proved just as disabling. Geoffrey may have appeared happy within the limitations of his world, but I, for whom so much more was expected, have only ever felt trapped within the limitations of mine.

Four

SCHOOL AND OTHER NIGHTMARES

Sensory Overload

The lights that flicker and force my eyes to close. The noise that explodes my core into cascading shock waves. The textures that irritate and suffocate every inch of delicate skin.

It was a typical Monday morning and Mum was getting me ready for school. She did the buttons up on my starched white school shirt, and pushed my fringe into place.

‘You look nice, Dear… very smart,’ she said.

I may have ‘looked nice’ on the outside, but I certainly didn’t feel very nice on the inside. Every unbearable inch of that itchy grey uniform poked sharply at my irritated skin. I wanted to rip it from my body and slip back inside my soft, warm pyjamas.

‘Stop scratching, you’ll make your skin bleed,’ Mum said, forcing a pair of black leather shoes over my thick school socks. They were the socks I hated, with