The day we discovered Mum was autistic
Her mother always behaved oddly, but Anna Wilson only found out why just before she died
My mother’s favourite saying was: “There’s a place for everything, and everything in its place.” It was the mantra that she lived – and ruled us – by. She was fastidious about meal times and tidiness and if things were messy or if something didn’t go to plan, she’d fly off the handle and have meltdowns, like a toddler.
To me and my sister Carrie, she was just Mum: a super-glamorous, fiercely intelligent woman, with an incredible memory for historical facts. She was also, by all accounts, an excellent Latin teacher – at the same grammar school she had once attended. It’s only in hindsight that I can see that things at home weren’t quite “normal”. But it would take until almost the end of her life before we were given an explanation for her odd, often erratic behaviour.
Socially, Mum just didn’t fit in. At the school gate, she couldn’t understand the social mores, or the small talk, and it used to make her really anxious. Sometimes, she’d be really brusque with people and say, “I think you’re talking nonsense.” As a result, she didn’t really have girlfriends. Her only real friend – apart from my father, who adored her – was her own mother. She’d say, “I can’t think of anything worse than spending time with a group of women. They use a lot of words to talk about stuff that’s not important before they ever get to the point.” She was baffled by how other women navigated the world. Men were more straightforward.
Mum found it hard when we were teenagers who left our wet towels on the floor and no longer stuck to the routines she needed. She was upset when, after Cambridge, instead of coming back home as she had, I moved to London, and later around the country with my family. She put constant pressure on me to spend more time with her. But her behaviour became downright bizarre when I was pregnant with my daughter, Lucy. She grew more and more anxious, insisting on coming to antenatal appointments with me and then, when I was overdue, ringing up hour after hour to ask when the baby was coming. She even insisted that my baby should be induced for her. She phoned me throughout my 36-hour labour, and then, when the baby was born, waltzed in, picked her up without looking at or speaking to me, and said “Thank God.”
Mum’s anxiety grew a lot worse after my grandmother died in 2008, and she also developed severe depression. Dad, in spite of his devotion, admitted it was really hard being at home with her all the time; within three years he was beside himself with anxiety too. Mum became obsessed with her physical health, convincing herself she had a really severe uterine prolapse (her doctor said it was normal). She would tell everyone she met about it, graphically – an obsession that led her to stop sleeping. She began phoning me and my sister twice, three, four times a day, making me so anxious that I had a panic attack. One day I rang Dad and he just howled at me down the phone. Panicking, I drove down there and found my mum in an almost psychotic state; walking around in circles, panting and making strange “whooping” noises.
At first, the doctors diagnosed her with generalised anxiety and depression, but my sister and I knew there was something deeper. We pushed and pushed for answers. Meanwhile, my poor dad developed terminal cancer and, in 2015, had to have his leg amputated. While he was in hospital, Mum – who had taken to sitting by herself in the dark – had a fall and was herself taken to hospital. Her bizarre behaviour was noted there too: “I’ve got to get this woman off my ward,” the sister said. “She’s driving me nuts.” I said, “Well, you and me both, can you get her an independent psychiatric assessment please?” And thankfully, she did.
Dad came home with one leg and Carrie and I cared for him. One day, I got a call from social services, saying they now thought my mother needed to be sectioned, but needed my permission. With a heavy heart, I agreed. I felt like I had signed her arrest warrant, like
I had ruined my parents’ marriage. I felt like I’d failed on all fronts. But I had no other option.
Mum was still in hospital when Dad died. Her reaction was to keep getting up and saying, “There’s a taxi coming.” After that, she became more and more closed off from the world and, eventually, we found her a residential home to move into. When we visited – a four and a half-hour round-trip – we’d find her sitting in a chair in the corner. She’d talk to us for 10 minutes and then say, “I think you’d better go now.” I asked her carer why Mum always wanted us to leave so soon, and she said she thought Mum was pre-empting our departure. Knowing it was going to be painful when we left, she wanted to get it over and done with.
Finally, after a lifetime of wondering, and years of pushing, a psychologist was brought on to
Mum’s case and, after observing her and reading her notes, he asked us if we’d ever considered that she might be on the autistic spectrum. She fitted virtually all the diagnostic criteria. Now everything made sense: the obsession with routines and timings; the social problems; the strange “whoop whoop” noises she repeatedly made when anxious; even her hatred of having showers, which were sensory overload for her, and had led her to stop washing in the home. Of about 700,000 people diagnosed with autism in the UK, only one in 16 are women, although the true figure is probably closer to one in three; they seem to be much better at “social masking” – observing others and copying their behaviour so that they can fit in and hide their condition. It’s like being an actor playing a role. No wonder Mum used to get so exhausted that she’d have meltdowns.
Her diagnosis didn’t result in any actual help with the autism, but luckily her key worker at the home had an autistic son, and understood her needs. She was on too many drugs by then for any other therapies or strategies to be of any use.
Sadly, two years later, in January 2018, she died aged 74. Nobody was in the room when it happened, but it’s believed that she had an awkward fall, which triggered a heart attack.
I’ve not heard of anyone else being diagnosed as late as Mum. Would it have helped her to know earlier? Having the diagnosis certainly helped her carers to look after her better at the end of her life. And it might have helped our relationship; I’d have had more understanding and empathy for her strange, unforgiving behaviour, and she might have seen how much I really did love her. But I’m not sure she’d have accepted the diagnosis. She was always very scathing about what she called “labels”. I can imagine her saying, “I’m not the one with the problem, it’s you that has it.” She just had a different way of seeing the world. She believed there was a place for everything, and there was a place for her, too.
I agreed to section Mum, I felt like I’d signed her arrest warrant
I found mum in a psychotic state: panting and making strange noises