The woman who saved my autistic twin

Johnny McMahon and Mary Ann Napper with their mother, Kathleen Cropper. Source: Supplied

MARY Ann Napper knew her twin was different, but it was only when she started school without him that she realised how much.

While she went to a typical Wollongong Catholic school, Johnny was diagnosed with "mental retardation" and sent to a "spastic centre". Her sibling was, in fact, profoundly autistic, but the twins were born in 1946, and the word did not even exist.

"I became more aware of people's reactions to us in public because of his autistic behaviour," Mary told news.com.au.

"There was the hand flapping, twisting of the head, his gait and the noises. People would move out of the pew at church because he was being a disturbance. I wouldn't invite friends home because I was afraid I would lose their friendship."

The twins playing together as children in Wollongong. Source: Supplied

As his twin, and the eldest of six children, Mary was assigned the role of Johnny's caretaker. She would wash and dress him, feed him and help him use the toilet.

"Growing up in that era, you never questioned your parents," she said. "I just accepted it. I couldn't get any answers and considered it my role to care for him and look after him.

"Mum said he was mentally retarded and it was God's will. Another time she said that he didn't get enough oxygen in the womb. As the older twin, for many years I felt responsible. I felt very alone and quite desperate."

Mary has now written a book, Born to Fly, based loosely on her experiences. She says it has helped her work through many of those buried feelings and come to terms with them.

"I did have a bond with him as his sister, so it was hard," she said. It grew increasingly difficult for Mary to care for her brother, and the authorities told the family he should be institutionalised. Searching for answers, the twins' parents Kathleen and John McMahon came across woman named Cath McCarthy, a Mothercraft nurse in Queensland who had reportedly changed the lives of many emotionally withdrawn children with her unorthodox methods.

Mary helps Johnny cut the cake at their 21st birthday, around the time he was sent to a mental institution. Source: Supplied

As it turned out, Cath was a woman far ahead of her time, who helped her wards develop with techniques still used on autistic people today. Johnny blossomed in her care.

"She taught him daily living skills, she taught him to read and write," said Mary. "She was also able to address a lot of the physical behaviours — the head rolling and tongue protruding.

"She used rewards and behavioural techniques like gradually exposing them to the situations the child was afraid of. It's unfortunate she didn't get him earlier."

Mary visited Johnny during the school holidays, and watched Cath at work. "She was an incredible, insightful woman," said Mary, who remained close to Cath until she died in her 80s. "She was strict and firm, but she had this love for them. It was a privilege and honour to have known her.

"It's very sad her methods weren't recognised because she could have stopped many children being diagnosed with 'gross mental deficiency' and put in mental institutions, or kept at home but locked up".

The twins at 18 months old, before Mary became Johnny's carer. Source: Supplied

Cath showed Mary how to cope with Johnny's epileptic fits, and the family used the methods his twin observed when their son came home for visits. For five years, Mary had a "normal" teenage life, taking the opportunity to make friends and not tell them about her brother.

But when Johnny returned home, it wasn't long before he became aggressive and started self-harming. "My parents couldn't cope," said Mary. "It was affecting the whole family."

At the age of 20, Johnny was institutionalised at Gladesville mental institution. It was a desolate place, and Mary visited him every day to bring him food and take his washing.

"There were no activities in the ward," she said. "Nothing to stimulate them, it was just 'mad people' running amok and sedated with tranquillisers.

"My brother just sat in the corner. I was quite demoralised."

Unable to handle things herself, Mary went overseas, where she met her first husband in London. His family objected to her "convict heritage" and warned him that she would have "mentally retarded children".

Mary hopes her book will inspire people to look at autism in new ways. Source: Supplied

Nonetheless, the couple were married for 11 years and had two children. In 1985, they split up and Mary returned to Australia, moving to Mosman on Sydney's lower north shore.

Her twin's life changed too. In 1995, he moved to The House With No Steps in Wollongong, and finally found somewhere he could be happy.

"They gave him his independence, which he never had at home or in an institution," said Mary, now 69. "He and his housemates have activities, go out and buy groceries and their own clothes, cook under supervision and go to the local bowling club."

When Cath died in the 1970s, she gave Mary a document that recorded the history of another child in her care. It languished in a dusty cupboard for 45 years, until Mary realised what she should do with it.

She wasn't a writer, but she realised she had a wonderful story to tell, combining her story and Cath's into a fictionalised account of the nurse's pioneering work. "It's been a cathartic journey," she said. "Hans Asperger coined the word 'autism' but his papers about it weren't even published until the 1960s. There's still a way to go. There's a lack of understanding and a lot of ignorance."

Only a week ago, a Canberra principal was suspended for locking an autistic child in a cage. while this week, the nation shared the joy and relief of Luke Shambrook's family when he was found after he went missing for four days in the bush.

Mary hopes to inspire people to consider different approaches to helping people with autism interact with the world, and understanding their needs and unique perspective.

"Johnny has a lovely, quirky sense of humour, and he accepts everyone," she said. "They are lovely qualities we can all learn."

Born to Fly is out now, with 25% of all sales donated to Autism Spectrum Australia. To find out more about Mary or to buy the book, visit her website.

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