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Growing up in the 1940s and 1950s, my older brother John always felt like he didn’t belong.
He was born during a time that didn’t have the understanding of autism, neurodiversity and mental health management we have now.
John felt like he was an outsider; he believed he was a misfit in most people’s eyes.
Decades later, my sister told me that a psychiatrist had told our mother that it was her ‘fault’ her 12-year-old son was unsociable, non-communicative, shy, and awkward. After this, she suffered dreadful guilt.
She was a single mother to me, John and our four other siblings — as our father died in 1949 from a heart attack.

The family’s primary source of income came from a modest war widow’s pension, and as soon as we were old enough, the six of us siblings began contributing financially by taking up jobs during our teenage years.

As a teenager, my relationship with him was strained—I often felt embarrassed, frustrated, and irritated, mainly due to the limited understanding of autism that existed at the time.

John was 10 years older than me, but I was his only friend.
For several years in his late teens, he wanted to be out in the world, and I was a willing companion. We would ride to the cinema, theatre, and art gallery on his motorbike.
Words excited my brother and he was incredibly witty.
He would find a quote from Shakespeare or another great poet to suit any situation, which encouraged a poetic vocabulary in me from a very young age.
He had a beautiful voice and sang lullabies to me. He could move from Gregorian chants to yodelling to Donald Duck impressions with ease.
John was my personal Peter Pan — I felt he didn’t want to grow up. And until I reached puberty, I didn’t want him to, either.

The image features Helen’s brother John as a toddler in the 1930s. Source: Provided

a black and white photo from the 1930s of a toddler boy in a white shirt and overalls

John often criticized himself for not fitting in with those around him.

Getting a diagnosis

From the late 1950s to the mid-1960s, John worked for a wholesale drug company.
When he was around 30, he went to Bathurst Island in the Tiwi Islands, off the coast of Darwin. I’m not sure what happened to him during this time, but he returned to Sydney 10 months later and never worked again.
Back at my mother’s house, he essentially locked himself in his room for the next eight years and hardly came out.

He was skinny and almost exclusively ate lentils, despite our mother being a great cook.

In the early 1970s, we asked a psychiatrist to assess John at the house.
The doctor had a very strong Scottish accent, and we hadn’t heard the term autism before, so we thought he said ‘artistic’.
John had been living without a diagnosis for almost four decades. I believe him not having validation and professional support severely affected his mental health.
The doctor said it was possible for John to live what he described as “a fairly normal life”, but first needed some treatment in hospital for his mental health.

He wouldn’t go. And as he was not considered unwell to the point of being a danger to himself or others, we couldn’t make him.

Letters from Townsville

When our mother died in 1973, John’s mental health took an even steeper decline.
He had nowhere to live after the family house was sold.
John was then admitted to a psychiatric hospital. He was declared fit to leave after three weeks, which I believe was a complete mistake based on his mental condition.

For the next couple of years, he bounced around the country, including stays in Canberra and Darwin.

an older man with a grey beard and hair in a crowded apartment

John in his first Townsville apartment. Source: Supplied

I believe he tried to overcome his feelings of not fitting by pursuing different adventures.

Shortly after Cyclone Tracy devastated Darwin in December 1975, he decided to travel there from Sydney to help with the clean-up administration.
John soon moved to Townsville in northern Queensland in the mid-1970s, where he spent the last two decades of his life.
We wrote letters to each other often. They showed he repeatedly blamed himself for the hardships he had experienced.
“I spend my time going back into my past and trying to change it …” he wrote.
“… I have delusions of adequacy, not delusions of grandeur but of adequacy.”

But it wasn’t his fault; he’d been without a diagnosis and understanding for too long. 

A downward spiral

He started several university courses — in Spanish, philosophy and accounting — while living there, but shortly gave up each one.
Later, John moved from the three-person apartment he had been living in to a council flat by himself in the mid-1980s.
From here on, it was a downward spiral.
He still wasn’t working. I believe he was receiving some type of government support. My brother never asked for financial help, but my siblings and I would also send him money.

He hardly left his room and was almost catatonic with despair.

Ultimately, I think John’s familiarity with prescription drugs — due to his pharmacy career and study — was not good for him.
In his letters to me in his last decade of life, he often spoke about how he was trying to recover from prescription drug and alcohol abuse.
He was not in a healthy way mentally and physically towards the end.

We were told that John died of a heart attack on Christmas Day 1997 in Townsville at the age of 62. We all went up for his funeral, which was just incredibly sad.

For the past 25 years, I have been reflecting on how society at the time treated him and how much things have changed, for the good.
He seemed to think of his life as a hopeless mess, but it wasn’t. He just grew up in a time when understandings of neurodiversity and mental health wasn’t understood like it is today.
Watching my brother’s despair broke my heart, but I’m glad it is getting easier for people to receive diagnoses and access professional support.
For support and information regarding autism, readers can contact Autism Connect.
Readers seeking crisis support can ring Lifeline on 13 11 14 or text 0477 13 11 14, the Suicide Call Back Service on 1300 659 467 and Kids Helpline on 1800 55 1800 (for young people aged up to 25).
More information and support with mental health is available at beyondblue.org.au and on 1300 22 4636.
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