The middle-aged mother who’s just found out she’s AUTISTIC
THE sun is streaming through the window, causing dust to dance in the air. It sparkles. I want to reach out and grab some, in the way I caught dandelion seedpods as a child. But I don’t reach out into the glistening air. Instead, I sit still and concentrate hard on what the woman opposite me is saying. I feel dizzy, unanchored. I believed I was ready for this moment, but the consultant psychiatrist’s words still have the power to shock.
She is telling me why I am the way I am. I am not broken, she says. Or defective. I am just different. I am autistic. To many who know me, this diagnosis will come as a surprise. Outwardly, mine is a conventionally happy and successful life. At 45, I have a solid marriage of 20 years to Tim, a photographer, and we share a beautiful house in Norfolk with our sons Jack and Toby, teenagers on the cusp of leaving home for university. I also have two daughters, Lucie and Tatiana, known as Tatti, now in their 20s, from my first marriage.
I have an interesting job as a writer and PR consultant — I communicate for a living.
Inside, however, it’s a different story. As the psychiatrist speaks, relief, elation and sadness overwhelm me because, finally, I have some answers.
All my life I’ve tried to hide my weirdness from others.
I have rigid routines. My need to do so many things the same way is something people often remark on. It can drive Tim to distraction.
My very specific coffee shop routine; my need to use the same service stations on any journey. My need to have my bed ‘just so’.
I line up my clothes and nail polishes in order of colour and feel uncomfortable if someone moves them. I repeat words or phrases in strange ways.
I find eye contact difficult and my reactions to situations are often slightly ‘off’.
Sensory issues can dominate my life. On bad days I feel under endless attack from smells and sounds.
I feel assaulted by bright lights. A label in a jumper or a seam on a sock can be so distracting that everything else fades into the background.
SITUATIONS I can’t control and events I can’t predict confuse me, whether they are negative or positive. Sometimes it must be very hard being my husband.
My diagnosis of autism — Adult Asperger’s, to be specific — both comes as a shock and makes complete sense. As I take it all in, I wonder how it will affect my marriage.
Parenting and working together has given our life a structure and purpose together. We are a team.
But in many ways we are opposites. Tim relishes the emotional peaks and troughs of life, and absorbs the world through his senses. I feel safest surrounded by facts. The ideal for me is an emotional neutral.
Tim describes marriage to me as a constant getting-toknow- you exercise, like being on the same first date for 20 years.
Often I wonder if he’d be happier with someone else — someone who responds to nature and could see wonder in a dragonfly dancing on the breeze at the edge of a crystal clear river.
Someone who would enjoy the onslaught of light and sound at a gig. Someone who feels, rather than thinks. Someone who doesn’t have so many idiosyncratic habits.
He says he is happy with how things are, but I am uncertain. I WAS aware from a very young age that not only did I behave differently from the others, I also thought differently.
As a child, I would take everything literally. The first time I heard the saying ‘ has the cat got your tongue?’, I was so alarmed I had to check my tongue was indeed still in my mouth.
My odd behaviour — I avoided other children, didn’t play with toys in the usual way, spoke in a manner well ahead of my years and always had my head in a book — was explained away by the fact I was adopted and being raised as an only child.
I would have explosive meltdowns. I’d kick and scream, throw myself to the floor and hold my breath until I went blue and fainted. People said I was ‘spoilt’ or ‘strong-willed’. The truth was that I was bewildered by the rules of a confusing world.
I tried so very hard to fit in. I had no idea how to think and feel like everyone else, so I tried to look like them, dress like them and — weirdly important to my seven-yearold self — to acquire similar possessions.
During the long, hot summer of 1976, while the country talked of nothing but hosepipe bans, I was obsessing about Ballerina Sindy. I didn’t really know why I wanted one, just that everyone who had one seemed happy. Eventually, after much nagging, I became the proud owner of a Sindy doll.
But I literally had no idea what to do with her. After I had changed her outfit a few times, she was relegated to the back of my toy cupboard.
I would observe other girls in my class so I could copy their behaviour and mannerisms.
To discover how the world worked I became an obsessive book reader.
As a teenager, I particularly loved Jilly Cooper’s books. Lots of my friends read them too. They didn’t, though, read the same one 20 times over. They couldn’t name every character and answer questions that would stump a Mastermind contestant.
But through Jilly Cooper’s novels I learnt about human behaviour and how to behave around other people. How not to be seen as odd.
I genuinely read Jilly Cooper as you would read an instruction manual for a washing machine. I thought I would find all the answers to life within those pages. After my diagnosis, I discover that copying neurotypical ( or ‘normal’) behaviour is one of the key differences between autistic boys and girls.
unlike boys with autism, who are often happy to strike out on their own, girls tend to have a strong need to fit in. Society expects this of girls, too.
Mimicking the behaviour, style of speech, interests and social interactions of others provides something akin to a blueprint for life. While neurotypical girls have an innate understanding of how to behave, autistic girls have to learn. But camouflaging their true selves means diagnosis for girls can be delayed for decades, according to Tony Attwood, author of The Complete Guide to Asperger’s Syndrome. There are 700,000 people in the UK diagnosed with autism. Estimates of the number of males to females range from 16:1 to 2:1. With most research focused on boys, it’s difficult to know the true figure. Girls on the autistic spectrum are an invisible, often unsupported group.
Around 42 per cent of autistic women have previously been misdiagnosed, and the problem is women are often diagnosed only when the wheels have fallen off their lives.
‘Making people aware that girls can have autism is still a massive challenge,’ says Sarah Wild, head of Limpsfield Grange, a school for girls with communication difficulties,