Mum was a mystery when I was growing up. My sister Carrie and I loved her, but we were scared of her mood swings. She would cuddle us, help with homework, cook delicious meals from scratch. But if we were ill or something changed her routine, she flew off the handle.
She would shake her fists and look in the mirror shouting ‘Bloody kids!’, or grab hold of us and shake our wrists. I think it was a way of trying to contain her rage. She was controlling about food, and hated mess and noise. ‘A place for everything and everything in its place,’ was the mantra of our childhood.
My grandmother, her mother, was Mum’s rock. She lived down the road and tried to contain her meltdowns. Sometimes she would deliver a low ‘Gillian’ as a growl, and Mum would stop, mid-rant.
We were constantly walking on eggshells. Why was Mum like this?
Anna Wilson (pictured) who lives in Wiltshire, reflects on the years before her mother was diagnosed with autism
It was 35 years later, on November 4, 2015, when I was 45 and Mum, 72, that we had an amazing breakthrough about her condition.
After years of seeking professional help, including a stint in a mental health unit, Mum met a new psychologist. He’d read all her notes and the letters we’d written. It was like someone was finally listening to us.
He could hear us saying: ‘This is what our mum is really like. She’s not just a confused old lady who needs to take her pills, she’s been like this for ever.’
He asked if we’d ever considered Mum might be on the autistic spectrum. What he told us changed our lives. But Mum, and our extended family, went through years of confusion before we knew the truth.
It was in January 2015 that I realised my mother’s behaviour had become manic.
My father had gone into hospital. So I left behind my husband, children and my dog in Wiltshire and went to stay with her at their house in Tonbridge, Kent.
‘I was shocked by what I found. Mum was talking in a loop, moaning, gasping and whooping. The fridge was full of rotting salmon, ham and lettuce (the only food she would eat).
Where had my stunningly beautiful mother gone? The woman who went to Cambridge and had a degree in Latin and Greek? Men fell at her feet at university, while my dad, Martin, was quietly there in the background, trying to get her attention. When they got together aged 19, they were a ‘golden couple’.
But, looking back, she always found change traumatic. She lived in the same town all her adult life, working as a Latin teacher at her old school. Dad commuted to London every day as a compliance officer in a merchant bank.
Anna who was born in 1970, recalls her mother hitting her over and over, after the bottle for her ink pen fell on the new carpet. Pictured: Gillian and Martin with baby Anna
I was born in 1970; Carrie in 1973. When things got ‘a bit much for your Mum’, we’d stay with Grandma. But Mum’s anxiety became more apparent as we got older.
There was one episode when I was filling my ink pen and the bottle fell on the new, green carpet. Mum screamed and hit me on the arm with her fist, over and over.
Later, when I was an adult, I would phone Grandma and say: ‘I can’t cope with Mum. I don’t know what’s going on.’ She’d sigh and say: ‘She’s always been tricky. You’ve just got to forgive her.’
If Carrie and I ever wanted to do anything adventurous, Mum would find a cutting in a newspaper saying things such as, ‘Girl gets attacked while crossing France on her own’ to dissuade us.
When I went to study French and German at Cambridge, she wanted me to ring every day. When I got married in the mid-1990s, she took Valium to calm her the night before.
I remember when I was pregnant with my first child, she was furious the baby was late. ‘It’s much worse for me than it is for you,’ she said.
Anna said things unravelled after the death of her grandmother in 2008, she became her mother’s mum rather than her daughter. Pictured: Gillian with her daughter Anna as a child
I was bemused. But now I realise she was reliving her anxieties about my birth — even though it had been relatively straightforward — and was terrified something would happen. If I tried to talk to Dad about Mum, he’d say affectionately: ‘She is like a cat. She needs her own space.’ So we learned to manage her anxiety as best we could.
When Dad retired, they enjoyed the theatre and concerts. They had a little flat in Cambridge where they would see old friends. My children, who are now 21 and 19, have fond memories of their grandparents.
But things unravelled after my Grandma died in 2008. Mum would phone us all the time and try to get us to ‘fix’ her. She’d say: ‘I can’t sleep, what am I going to do?’
She was convinced there was something wrong with her physical health. We became her mother rather than her daughters.
We suggested alternative therapies, relaxation techniques, cognitive behavioural therapy — all of which she would try for a short time before rejecting.
By 2012, Mum was seeing a psychiatrist privately. The consultant had diagnosed depression and had started Mum on a series of drugs. When these had no effect on Mum’s insomnia, he told her she would ‘probably always be miserable’.
She had short stays in a psychiatric unit but, in May 2013, when my mum was 70, her brother called me and said: ‘You’ve got to step in, because your Dad’s not coping.’
Anna said she felt like a terrible daughter and wife, having to beg favours so she could go and see her mum and dad. Pictured: Anna’s wedding day
Mum had given herself third-degree burns cleaning the oven with bare hands, using caustic soda. My uncle said she was dishevelled and unkempt. I called my father who insisted things were OK, but then howled down the phone.
‘Go now,’ my husband told me.
When I arrived, I saw Dad had been putting on a fantastic act. He was a hugely supportive husband but there were times he needed to get out and be alone; now he had to be with Mum all the time. She was obsessed by cracks in the wall, a broken fridge, ‘filth’, chaos.
For the next few years, I felt like a terrible daughter and wife. I was constantly begging favours so I could jump in the car to see Mum and Dad (a ten-hour round trip).
I looked as unkempt as Mum. I’m a children’s author but I couldn’t write or read.
My teenage daughter was doing her GCSEs and my husband worked in Amsterdam for food company Danone. He’d come home after a long week away and I’d be in bits.
My wonderful sister Carrie had two young children and was trying to hold down a job in a hotel, as well taking turns caring for Mum.
Anna (pictured) explained that her mother was lovely when a doctor put her on the anti-anxiety drug Pregabalin in August 2013
I remember a friend saying: ‘Women are the unpaid capital when it comes to caring.’
When a doctor put Mum on the anti-anxiety drug Pregabalin in August 2013, it was briefly like someone had waved a magic wand, because she was so lovely to be with. But, by Christmas, she was clingy and panicky.
In May 2014, she took an overdose. What made us angry was she was deemed not to be a risk to herself and discharged from hospital. Then, in September, my lovely father, who had calmed Mum throughout her life, was diagnosed with a tumour in his leg.
Dad’s surgery was scheduled for January 2015, and the nightmare got worse. Respite care homes wouldn’t take Mum, wary of taking a mental health patient with no clear diagnosis.
I called Mum’s psychiatrist and was told he couldn’t talk to us about her care. ‘Your mother has capacity,’ the secretary stated. She was reading from a crib sheet.
Like many others, we hit up against the Mental Capacity Act, which makes it hard for you as a caring relative to put across how bad things are behind the scenes.
When Dad came home, my mother made him sleep on a sheet of plastic on the sofa as she couldn’t bear the idea of mess. Soon, he got an infection.
Anna said she doesn’t doubt that one of the reasons her father got cancer was because he lived with the stress of her mother. Pictured: Anna as a child with her mother
Meanwhile, I had no idea how to navigate the world of social care. You’re not told how to fill in the criteria to apply for a care package. Mum was quite frightened of her psychiatrist, so if he asked her a question she pulled herself together. Then she’d have a meltdown in the car on the way home. Carrie recorded her behaviour to show the psychiatrist but he didn’t seem to believe us.
When Dad asked me to sign power of attorney for Mum, my heart sank. I said to my husband: ‘I cannot have her living with me.’ And he kept saying: ‘But your father’s got cancer.’
He was right, but I’d never be able to leave the house. At the same time, I didn’t want Dad to die worrying about his wife.
Carrie and I were constantly tight-chested and we lost a lot of weight. I don’t doubt one of the reasons Dad got cancer was because he lived with that stress. I was venting about the situation on Facebook and a friend recommended I speak to his friend, Richard, who worked for Age UK.
Richard said: ‘Ah, yes, this is classic. They’re not listening because you’re not using their language. You need to say you have two parents who are vulnerable adults and that your father is his wife’s primary carer, but he’s also sick.’
He gave me amazing advice and it worked. After a huge paper trail, a mental health team began visiting Mum while Dad was in hospital.
When my poor Dad had his leg amputated, Carrie found a wonderful carer who helped us look after Dad and subtly took care of Mum. She was able to distract Mum while the hospital brought in ramps and grab rails (Mum couldn’t bear her home to be disrupted).
Anna (pictured) said her father died peacefully in July 2015, then in November they met a psychologist who suggested her mother might be on the autistic spectrum
In May 2015, we were told Dad had two months to live. At the time, Mum was in hospital after a fall. A social worker called and said they wanted to admit her to a mental health unit.
It was a relief, but horrific because I had to give permission for her to be sectioned and tell Dad he wasn’t going to see Mum.
Obviously I didn’t say he would never see her again, but that was the subtext. Dad died peacefully in the local hospice in July 2015. We went to tell Mum, but she didn’t seem to be able to react to what we were saying. She kept insisting there was a taxi coming.
We organised a mini funeral service with Dad’s coffin just for her. She was brought in by nurses and was almost angry. I think it was just far too much for her.
Then, in November, we met that psychologist who changed our lives. He asked us if we’d ever considered our mother might be on the autistic spectrum.
My sister and I looked at each other in amazement. ‘Yes, yes, yes, that’s what it is!’ It was like an axe had been hurled against a glass box. We were free.
He was surprised Mum had coped with being a teacher but, when we explained she had gone back to her old grammar school, he said: ‘Ah — familiarity, routine.’
Mum ticked all the boxes for autism: the tapping of surfaces (known as stimming), the obsession about food, hating things being moved.
Anna (pictured) revealed her mother died in January 2018, having missed out on a diagnosis that could have been life-changing if she had it years earlier
Female autism/Asperger’s is a side of the story that’s rarely told. Many high-functioning women are highly observant of their environment, so they’ll watch how other people behave and learn to fit in. Mum read women’s magazines obsessively to get the right recipes, the right clothes. She hated the school gates because she had no idea how to behave there.
Her old friends were blown away by her diagnosis because Mum was their intelligent, outspoken, beautiful friend.
She couldn’t live on her own, so we found a residential care home, though we could never persuade her to join in with any of the activities the carers suggested.
‘For her, the outside world represents total chaos,’ her doctor told us bluntly. ‘It’s bright and noisy, the wind against her skin is like a violent attack. The idea of going for a coffee anywhere is close to hell for her.’
In January 2018, we got a call telling us Mum had fallen awkwardly and died of a heart attack. We were devastated but, in many ways, she had crept off like a cat, without fuss.
It’s so sad she missed out on a diagnosis that could have been life-changing for her had she had it 60 years before. She could have had the support she needed to manage her anxiety.
After Dad died, I started a blog about grief. But it evolved into a memoir about Mum’s autism.
I’ve had to be painfully honest, but I don’t want to come across as the daughter who hated her mother. I found her very difficult sometimes, but I adored her.
Interview: Liz Hoggard
A Place For Everything: My mother, autism, and Me, by Anna Wilson (£16.99, HarperCollins), is out now.