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 over 70 years, blighting family life
THE FIRST time Anna Wilson realised her mother Gillian was different was at the age of eight when she accidentally spilled ink over her new bedroom carpet. “Mum was trembling with rage and shook me so hard I was terrified,” recalls Anna, a children’s author, who lives in Cornwall.
Cambridge graduate Gillian, 50, was devoted to her family. Anna, her younger sister Carrie and dad Martin always came home to a meticulous house where meals were served on time and homework was completed to a set schedule. But Gillian couldn’t cope with any disruptions to her strict order.
“As a teenager, if I dropped a towel it was like the world was ending,” says Anna. “Mum would have dreadful rages and we knew when to keep quiet and look away.”
Over the years, Gillian’s strange behaviour grew more pronounced and Anna became convinced she had an underlying mental health problem. Her temper and anxiety levels were off the scale and she struggled with small talk, preferring instead to lecture people on history and politics.
She was also incredibly controlling, wrote endless lists, worried incessantly, was fidgety and hated any degree of uncertainty.
At college, when Anna decided to hitchhike to Paris with some friends, Gillian went into free-fall, bombarding her daughter with newspaper cuttings about 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 just too stressful.”
When Anna married her husband David, it was Gillian who insisted on arranging everything, despite needing Valium because the stress became too much. Her controlling behaviour continued even after Anna had her own children, Lucy, now 21, and Tom, 19.
In 2008, after the death of Anna’s grandmother, who Gillian had always relied on, Gillian’s eccentric 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.
“It was exhausting as I had young children, and I lived on the other side of the country,” says Anna, who never quite knew how to help.
Over the next few years, Gillian saw a private psychiatrist and was treated for anxiety, depression and psychosis. Although there were times when medication made her feel better, over the next five years her mental health deteriorated.
“Mum had always been this glamorous, intelligent woman but she became a shuffling, dishevelled mess. She couldn’t sleep, and would pace around, gasping.”
Gillian’s obsession with the state of her home escalated. “Mum saw everything in such detail,” Anna recalls. “To her, a very slight crack in the ceiling was a gaping hole.”
In 2013, desperate for help, Anna and Martin took Gillian to A&E to try to get her admitted. But in spite of her apparent instability, Gillian was allowed to remain at home. Her mental health got worse and not long afterwards, Martin was diagnosed with cancer and had to have his leg amputated.
Gillian was so distressed she was unable even to discuss the diagnosis and Martin was made to sleep on a plastic sheet on the sofa as she was so scared that his wound would damage the furniture.As heartless as that might sound, Anna insists her mother wasn’t cruel.
She was simply unable to deal with such a highly stressful situation in a normal way.
WITH MARTIN’S condition terminal and fast deteriorating, Anna was forced to have him hospitalised and Gillian sectioned. “It was heartbreaking as they never even got to say goodbye. Mum was too ill even to come to dad’s funeral.”
Devastated by Martin’s death, relief came for Anna and Carrie a couple of months later when Gillian was finally given a diagnosis by a psychiatrist on the mental health ward where she was being treated.
“When this kind man looked at us and asked if he thought it was possible that our mother was on the autistic spectrum, I wanted to cry, as in that moment it all made sense,” says Anna.
Everything he said about autism seemed to describe Gillian to a tee; from her obsession with order to the outbursts, the anxiety, the routines, her habit of tapping and her fixed, logical interests, which were politics, Latin and cricket.
“Mum could never get her head around novels or female heart-to-hearts as she found it impossible to put herself in anyone else’s shoes,” says Anna, who has since learnt that this is a classic trait of autism.
Sadly, the diagnosis of highfunctioning autism came too late for Gillian, who at 72, failed to accept it. She died a couple of years later, in residential care.
“Her friends refused to accept the diagnosis too,” says Anna. “To them autism wasn’t my mother, it was Rain Man.”
According to the National Autistic Society, women are a third less likely than men to have the condition and remain massively under-diagnosed, especially in cases of high-functioning autism. This is apparently because women are better at masking their symptoms and copying socially acceptable behaviours. “This was definitely my mum,” says Anna. “She had friends and she and my dad socialised a lot. More often than not, she knew how to smile and laugh in the right places, but it was as if she was playing a part and she always seemed exhausted afterwards.”
This tendency to mask can lead to incredible levels of 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 anxiety, eating disorders or depression,” she says. “A diagnosis can help explain that feeling of difference, which in itself can take away some of that stress.”
Anna, who has written a memoir about her mother’s struggles to highlight the importance of women with autism getting a diagnosis, agrees.
She believes it was Gillian’s anxiety rather than the autism itself that made her so unwell.
“It makes me incredibly sad, as mum was this intelligent, funny and caring woman but she was overwhelmed by anxiety,” she says. “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, £16.99 for hardback. It is available on ebook and audio.