Not getting an autism diagnosis made Mum’s life so hard
The children’s author tells Lucy Benyon how her mother’s condition went under the radar for 70 years
The first time Anna Wilson realised her mum Gillian was different was aged eight when she accidentally spilt ink over her new bedroom carpet.
“Mum was trembling with rage and shook me so hard I was terrified,” recalls Anna, 50.
Cambridge graduate Gillian was devoted to her family. Anna, younger sister Carrie and dad Martin came home to a meticulous house where meals were served on time and homework completed to a set schedule. But Gillian couldn’t cope with disruption to her strict order.
“As a teenager, if I dropped a towel it was like the world was ending,” says Anna. “Mum would have these dreadful rages and we all knew when to keep quiet and look away.”
Over the years, Gillian’s strange behaviour grew more pronounced.
Her anxiety levels soared and she struggled with small talk, preferring instead to lecture people on history.
She was also controlling, wrote endless lists, worried incessantly, was fidgety, and hated uncertainty.
At college, when Anna decided to hitchhike to Paris with some friends, Gillian went into free fall, sending her daughter newspaper cuttings of travellers being raped or murdered.
“In the end I decided not to go,” says Anna. “My friends thought I was mad, but they didn’t understand my mum. Upsetting her was stressful.”
When Anna married her husband David, it was Gillian who insisted on arranging it all despite needing Valium because of the stress.
Such behaviour continued after Anna had her own children, Lucy, now 21, and Tom, 19. In 2008, after
Anna’s grandmother died, Gillian’s behaviour spiralled into extreme anxiety and depression. Plagued by chronic insomnia, she would call Anna four times a day and was in constant need of reassurance.
Over those next few years, Gillian saw a psychiatrist and was treated for anxiety, depression and psychosis. Her mental health gradually got worse.
“Mum had always been a glamorous, intelligent woman but she became a shuffling and dishevelled mess. She couldn’t sleep, and would pace around, gasping.”
Gillian’s obsession with her home rose. “Mum saw everything in such detail,” Anna recalls. “A very slight crack in the ceiling was a gaping hole.”
Seven years ago, Anna’s father was diagnosed with cancer and had to have his leg amputated.
Gillian was so distressed she was unable to discuss the diagnosis and Martin slept on a plastic sheet on the sofa as she was scared his wound would damage the furniture.
But Anna insists her mother wasn’t cruel. She was simply unable to deal with stressful situations.
With her father’s health failing, Anna was forced to have him hospitalised and Gillian sectioned. “It was heartbreaking as they never got to say goodbye,” she says. “Mum was too ill to come to Dad’s funeral.”
Relief came for Anna and Carrie two months later when Gillian was given a diagnosis by a psychiatrist on the mental health ward where she was being treated.
“When this kind man asked if it was possible our mother was on the autistic spectrum, I wanted to cry – it all made sense,” says Anna.
Everything he told them about autism described Gillian to a tee; her obsession with order, the outbursts, the anxiety, the routines, her habit of tapping and her very fixed, logical interests – politics, Latin and cricket.
“Mum could never get her head around novels or female heart-to-hearts as she couldn’t put herself in anyone else’s shoes,” says Anna.
The diagnosis of high-functioning autism came too late for Gillian, who at 72, failed to accept it. She died two years later.
“Her friends refused to accept the diagnosis too,” says Anna. “To them autism was Rain Man.”
The National Autistic Society says women are underdiagnosed, especially with high-functioning autism. This is because women are better at copying acceptable behaviours.
“She knew how to smile in the right places, but it was like playing a part and she seemed exhausted afterwards,” Anna says.
This tendency to mask can lead to incredible stress, says Dr Sarah Lister-Brook, clinical director at the National Autistic Society.
“Many women and girls go on to develop secondary problems such as eating disorders or anxiety,” she says.
Anna, who has written a memoir of her mother’s struggles, agrees.
She believes it was the anxiety, not autism itself that made her unwell.
“If she’d had a diagnosis when she was younger, it could have made so much difference to her life.”
A Place for Everything by Anna Wilson is published by Harper Collins for £16.99 in hardback. It is available on e-book and audio too.
Mum knew how to smile in the right places, but it was like playing a part