What Lies in Front of Us (Victoria Kuttainen)

My father picks me up from the international terminal, curbside at YVR. It is October, 2015. Grey skies. Vancouver air—wet, clean, metallic: the home that is not home, having built my life on another continent. In the car he prattles about Justin Trudeau. And suddenly, we are there. The hospital, with its hospital smells. Fluorescent lights. Polished floors.

‘You must be the other daughter,’ the nurse says, materialising behind me as I reach the threshold of my mother’s room.

The other daughter.

I have spent a lifetime trying to come to terms with what that means.

‘I think you’ll be shocked when you see her,’ my sister wrote in an email before I boarded my flight.

I wasn’t. My sister sat in the bedside armchair, a dark shadow in the corner of the room. My eyes were drawn instead to the pattern of holes in the light-blue hospital blanket draped over my mother’s emaciated frame. A wisp of a thing, my mother used to call me, when I was a skinny little girl.

‘I’ve never seen anyone wait so long to come into hospice,’ the nurse murmured.

‘We’re not sending her there!’ my father had yelled into the phone before my departure. ‘You don’t understand, people who go there don’t come out!’ 

Standing behind the nurse, he does not appear to process what she has said.

So this is how it ends. 

***

I often wish there was something more wrong with her. As terrible as that is to say. If it was something like Down Syndrome, there’d be help. Please forgive me for what I said.

My mother slipped letters like this under my bedroom door all through my childhood. She left me another letter when she died. It took me years to open it. Cruelly, when she told me years into her cancer that she was writing these letters, I told her I didn’t want one: I wanted a family that talked instead.

When I was young, she sometimes threatened suicide. I held her while she sobbed.

‘Whatever you do,’ she cried into my shoulder, ‘don’t give up your career. Carve a life of independence. Don’t end up like me.’

And so, I did. In Australia.

There were no words then for what my family was dealing with, for the care that fell to my mother without support.

***

On my sixth birthday, in 1979, I was given a detective kit—real fingerprinting powder, sticky tape, a magnifying glass. I dusted through the basement until black whorls bloomed and smeared across the white walls.

Only much later did I understand how apt a metaphor that was.

I spent my childhood playing kid detective, discerning patterns others didn’t see.

‘When did you realise there was something different about her?’ I asked my brother years later, about our sister, when I began writing about our childhood.

‘You spent more time with her than anyone else,’ he said. ‘I think I realised much later than you did. When it became much more obvious.’

He was off riding motorbikes with local farm boys while my sister and I stayed closer to home.

I was a witness, and sometimes a victim, of the violence that flared around her meltdowns.

At the time, there was no diagnosis available to explain what we were living with.

***

When I meet an old childhood friend in a Vancouver café, the air thick with the warm aroma of coffee and freshly baked banana bread, I ask the same question.

‘When did you first notice?’

‘There was always something different about your family,’ she says. ‘Your family was British, eccentric. Different from other Canadian families. For a long time, it seemed like that explained everything.’

She pauses. Wraps both hands around her cup. Watches the steam rise and thin. I feel my shoulders inch upwards, my body tense with shame. These are conversations avoided over a lifetime. They were impossible when my mother was alive.

‘I guess as we got older,’ she says, ‘I don’t know when, it became more obvious there was something else.’

Unlike some of my other friends, who came and went, she stayed in our house often: school-holiday sleepovers, weeks at a time. I am asking her this question because she knew our family over a lifetime, and because I think she may have seen more.

‘I do remember your sister had a temper,’ she says. ‘She used to get really upset. A lot of meltdowns, I guess. One thing I remember is that downstairs in the basement she’d punched holes through the wall. That really shocked me.’

At the time, none of us knew what to do with that shock.

***

‘There’s something wrong with that girl,’ my grandmother used to say.

My father’s parents were blunt. ‘Your mother’s too easy on that girl.’

I said nothing.

Without language, judgment filled the gap.

***

She avoided doctors. The one time my mother managed to take her was the last. He weighed her, told her she was obese.

‘That doctor is a whack-job!’ my sister screamed, as I withdrew from the scene—out of sight but not out of hearing the door-slamming, crying, yelling as she spun out of control.

We learned to tiptoe around her when she reached the apex of her anger, to avoid even words of sympathy, for fear they would trigger another explosion. We let her reel out, lash and flail, and eventually simmer down, when she would slowly reel herself back in. Not a single word was spoken afterward about what had happened.

All through the 80s and 90s, silence became our rule.

***

Asperger’s did not enter the Diagnostic and Statistical Manual until the mid-1990s. When it did, it was understood almost exclusively through boys: bright, eccentric, socially awkward. Girls like my sister—compliant and sweet in public, volatile and angry in private—fell through the cracks.

Without a name, behaviour was moralised. Distress became temperament. Meltdowns became failure. In contrast to today’s world of Instagram and Tiktok therapy, the 1990s hardly had any language for mental health.

By adolescence, other things bloomed: anxiety, depression, volatility. These were treated as separate issues to deny rather than as consequences of something deeper that still had no name.

Each crisis passed with the same response: nothing is wrong. Heads in the sand. Maternal self-blame. ‘I’m a terrible mother,’ my mother cried to me again.

Silence calcified.

***

Much later, I learned there is a name for this kind of harm. Philosopher Miranda Fricker calls it hermeneutic injustice: what happens when people lack the shared language to make sense of their experience. She gives the example of women before the term sexual harassment existed—who were harmed not because nothing was happening, but because what was happening could not yet be said.

This was our situation.

The harm occurred before language, and it accumulated silently.

By the time words began to arrive, they arrived late, and unstable. Asperger’s flickered briefly into existence. We began to read: Tony Attwood’s Asperger’s Syndrome: A Guide for Parents and Professionals. High-functioning. Socially awkward. Still boy-centric.

Then the language disappeared again into the broader category of autism, which sounded too frightening, too final. For families like mine, that distinction mattered. Language arrived first too provisionally, and then too hard. We stumbled around it, but by then silence had become our rule.

It was only years later, when I read Kate Strohm’s account of growing up as a sibling of a child with a disability in the 1980s, that I recognised the unspoken laws governing families like ours: loyalty, discretion—and most of all the tacit agreement not to talk about it at all. 

Mothers absorbed guilt until it hardened into identity. Siblings absorbed responsibility without ever being asked. No plans were made, because planning would have required naming what could not be said.  Besides, my sister didn’t have a disability. Not a visible one.

I think back to my mother’s desperate words: I often wish there were something more wrong with her. 

What was going on with my sister, and with us, was unseen.

***

My brother and I eventually turned to workarounds. Failing to convince our parents to seek counselling, we convinced them instead to sell the family home, forcing our adult sister into a version of independence.

She briefly took an apartment. My mother and I took the ferry out to Vancouver Island to visit her.  For me this was the beginning of the end of the dream. 

‘We can’t really afford this,’ my mother confessed on the bus ride back to the terminal. ‘Don’t tell your father. I’ve given her my credit card. I’m paying the rent. She’ll get a job soon. Isn’t it great?’

We sat in the open-air lounge watching the ferry lights flicker over the darkening sea.

‘It’s great, isn’t it?’ she said again.

I wanted to agree. I knew even a nod would appease her. But I turned my face toward the water.

‘What’s wrong? Aren’t you happy for your sister?’ She hunted for an affirmative response.

‘All this is really expensive, Mum.’ I eventually said. ‘I’m worried for you. And for her.’

‘You just don’t believe in her!’ She cried

‘What happens when you’re gone?’ I peeped.

‘Oh, don’t be silly,’ she said. ‘It just takes her longer than other people.’

Silence closed again.

Nothing was put in place. We still hadn’t found a way to speak about it by the time my mother died. 

***

Six weeks. That was all the time I had to help my father deal with my mother’s passing before I returned to Australia—six weeks to try to sort out some kind of plan for my sister, who had long ago moved back with them.

One morning he drove me east of Vancouver out to Abbotsford—an old farming town, paved over now with endless blocks of malls and parking lots. At his financial advisor’s office, three men in suits took command.

‘Tell my daughter from Australia what you told me about the Registered Disability Savings Plan,’ my father said.

They explained the numbers. A hundred thousand dollars from my father; three times that from the government. All tax-free. A disability planning mechanism, not unlike Australia’s NDIS.

‘Your sister just needs a diagnosis.’

‘But that’s impossible,’ I said. ‘She never went to the doctor. No benefits. No case history. She lived entirely outside the system.’

‘It’s worth a try,’ they said. ‘She just needs something current. Anything.’

We visited my old friend Joti, now a psychologist with a private practice in Vancouver. Her office is Pinterest-perfect: plants and prints and calming vibes. 

‘We think she’s on the spectrum,’ my father said. ‘We just need a diagnosis.’

Joti listened carefully. Then she shook her head.

‘This is Canada.  Gone are the years when people locked their relatives up in asylums. We can’t compel an adult to seek a diagnosis,’ she said. ‘Unless they are a danger to themselves or others. And even then, you’re lucky to get a night in a hospital bed. No ongoing treatment. No diagnosis. They have to seek out a diagnosis for themselves. And that costs, too.’ 

She leaned in then. ‘In my profession, this is such a catch-twenty-two. The best you can do is look after yourselves.’

We tried to look after each other. But in the end Joti was right, all we could do look after ourselves.  

Things returned to the family version of normal. Silence. Heads in the sand.

***

And then Covid hit. My father had a stroke. 

I was instructed to call his financial advisor in the case of emergency.

That is why, at three o’clock, I was standing outside a hair salon with my head in foils, 7,000 miles away in Australia, speaking to a woman I’d never met.

‘I’ve been talking to your father for many years,’ she said. ‘He spoke to me in great detail about the family.’

She paused, then went on. ‘He was very clear about one thing: your sister was not to have power of attorney.’

I said nothing then.

‘He knew she couldn’t look after herself,’ she continued. ‘I’m sorry. He was determined to retain financial control.’

Another pause. 

‘But now that he’s no longer capable, this has become a race against time,’ she said. ‘Your brother will need to be appointed power of attorney, and then you can work out arrangements for your sister from there.’

Back inside the salon, warm water ran over my scalp as I sat back in the chair, registering all this. When I explained myself quietly to the hairdresser—my dependent adult sister, undiagnosed, how complicated it all was—she leaned in.

‘My brother still lives with my elderly mother,’ she said, hushed. ‘Schizophrenic. I know exactly what you’re going through.’

‘I never talk about this,’ she added. ‘We always worry about what will happen to him when Mum dies.  But she won’t do anything about it.  We can’t talk about it.  My mother always blamed herself.’ 

‘I completely understand,’ I said, looking in the mirror.  

That was when I understood then this was not just the story of my sister, or my family.  

It was the story of a generation instead. 

***

Years after my mother died, I finally opened the letters she had written to each of us. I had a file folder with copies all three.

 My sister’s was a poem. Ode to Asperger’s.

It was the only time my mother ever named it. The only time she acknowledged, directly, what she had spent a lifetime managing without words. She did not frame it as deficit, but as difference: a world too sharp, too cruel. She had tried to shelter my sister from that world. Until she no longer could.

To me, she wrote about my independence, hinting at what she saw as its emotional cost: to her, and to me.

But I don’t think she ever understood what my life in Australia was really: a kind of exile, lived alongside guilt, shaped by a constant, low-level vigilance about my sister. And a future I could see but not prevent. 

***

It has been ten years since my mother died. Two since my father did. And one since the estate was settled in a way that left nothing in place for my sister’s care. Decisions were made that reflected the same tensions, avoidances, and silences that had shaped our family for decades.

For a long time, I struggled with the ethics of writing about my family.

But I write now because I know we are not alone. 

When people speak these days of an autism epidemic, I find myself arguing instead that there was, in the past, an invisible epidemic of the undiagnosed. Simon Baron-Cohen has called us the lost generation: the ones who fell through the cracks.

When I began writing about this, I was confronted with the politics of autism. This is not your story to tell, a writer said to me.

Maybe not. But my story is entangled with it. It’s the story of growing up without words, and of what happens when silence stands in for care.

After a lifetime of not speaking, I have had to reckon with the harm.

My life has taught me this: there is a cost to speaking out about others. But there is a greater cost still—the cost of silence, and the long, quiet damage of never speaking at all.

—

References

Baron-Cohen, Simon. ‘The new politics of autism.’ Financial times. 21 November 2025. https://www.ft.com/content/72ffc1d0-92c9-4c0f-80a9-f3b61465f283

Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University Press.

Strohm, K. (2012). Siblings: Brothers and sisters of children with disability. Wakefield Press.