Sunday 17 December 2017

Author Laura James: There's this weird resistance to women who get diagnosed with autism

Author Laura James tells our reporter why being diagnosed with Asperger's, at the age of 45, was a eureka moment that brought her closer to her husband

Laura James, Author of 'Odd Girl Out'. Photo by Steve Humphreys
Laura James, Author of 'Odd Girl Out'. Photo by Steve Humphreys
Laura James: 'It's really important for autistic girls to see you can have a successful life'. Photo: Steve Humphreys
'Odd Girl Out: An Autistic Woman in a Neurotypical World' by Laura James, published by Bluebird
Deirdre Reynolds

Deirdre Reynolds

During a recent trip to Dublin, British author Laura James made a beeline for the Brown Thomas accessories hall. Her book, Odd Girl Out, had just been snapped up by an American publisher, and to celebrate, her husband, Tim, treated her to a designer handbag. Sitting down for a coffee with me afterwards, she says it's something that probably would have sent her into a complete meltdown not so long ago.

"Years ago, Tim would have done that - bought me something as a grand gesture - and I would react horribly and say: 'Why did you buy me that?'" says Laura. "Christmas was like that. He'd buy me surprises and I'd be like: 'I just don't want it'. Even if it was something I really loved, I just couldn't accommodate it into my life."

Unexpected gifts weren't the only things that Laura felt unable to cope with - thunderous hand dryers in public toilets and blinding office lights were just some of the everyday occurrences that overwhelmed her. However, it wasn't until she was diagnosed with Ehlers-Danlos syndrome (EDS), a connective tissue disorder linked to other conditions, that she finally discovered why. At age 45, Laura - an author, businesswoman, wife and mother-of-four - was diagnosed with autism.

Recalling the moment two years ago that the "big, scary word" was first proffered by a nurse after she lost it over a tuna sandwich in hospital, Laura says: "I thought, 'Oh my God, it's like when they get people muddled up in hospital and amputate something when you're only going in for something minor.' I, like everyone else, had Rainman or The Curious Incident of The Dog in the Night-Time stereotypes," she says, referring to the movie and novel which both feature main characters with lives severely impacted by autism. "But then I started researching autism and researching female autism, and I was amazed."

Laura James: 'It's really important for autistic girls to see you can have a successful life'. Photo: Steve Humphreys
Laura James: 'It's really important for autistic girls to see you can have a successful life'. Photo: Steve Humphreys

Certainly, Laura - a self-confessed "country life mum" who lives in Norfolk with her photographer husband and their dogs Huxley and Smudge, and is best known for her cookbooks including Breakfast in Bed - couldn't be any further from the image of the card-counting savant made famous by Dustin Hoffman in 1988. However, with the benefit of hindsight, she believes that the signs of the neurodevelopmental disorder, which affects at least 1pc of the Irish population and can be characterised by impaired social interaction and communication, were all there growing up.

"I always knew I was different from a young age," she explains. "I remember distinctly being five years old in the primary school playground and watching the other girls, thinking: 'I don't understand why they're doing that.' But I also remember thinking: 'I can't let anyone see that I'm different so I must pretend.'

"If something was fashionable when I was at school, like Barbie dolls or French skipping, I would try and get very into those things. I think I was trying to do anything I could to make myself seem just like anybody else."

It's an act she kept up over the years, working as a publishing editor and PR consultant, and even after her diagnosis, right up until she "came out" to the world as autistic in a British broadsheet in November 2015.

"I think women are really good at masking," she says. "I've had friends who have suffered from depression, and I've seen how they mask it. I've seen them kind of get through their work day and then collapse at the end of it - and I think it's the same for autistic women. I think we try very hard to appear neurotypical, and in some respects that's great because it allows us to achieve things. But the toll on oneself is really high," she adds.

"It's a bit like working in a second language, I imagine. You've just pitched up in this new country and everything you're saying and everything that's being said to you, you're having to translate in your head. It's exhausting."

Down through the decades, the 47-year-old was misdiagnosed with everything from an eating disorder (because she would forget to eat) to an anxiety disorder (because her heart would race) by a succession of medics. "My parents took me to doctors all the time as a young child, and they diagnosed all sorts of things from digestive problems through to just being spoilt," says Laura, who at age 23 spent three months in rehab after becoming addicted to the tranquilliser Lorazepam, which she was prescribed for hyperventilation syndrome following yet another missed diagnosis.

"I remember my mum being written off as a bit neurotic because she was always taking me to the doctor."

So, when an in-depth diagnostic test finally confirmed she was actually suffering from adult Asperger's, Laura says she felt more relieved than aggrieved. "It's a bit like the scene at the end of The Sixth Sense where he realises he's dead. Standing outside the surgery where I got my diagnosis after a six-hour consultation, it was like: 'Oh my God, that's why that happens or that's why I did that.'

"It was literally like The Sixth Sense - everything coming together - and it was amazingly liberating. I felt like I could finally start living as myself rather than trying to pretend to be something else.

"I've always felt really that it was all my fault and now I can understand why the doctors misdiagnosed it, and equally, I can understand why none of it was my fault. I don't feel angry - I feel vindicated."

Now, noise-cancelling earphones and a feelings wheel are two of the tools Laura carries in her new handbag to help navigate the neurotypical world day by day. Just don't call her 'high-functioning'.

"Autistic people generally don't like functioning labels simply because I'm here now functioning brilliantly with you, but if you'd seen me yesterday when I was on a plane with my head in my lap - I couldn't communicate with cabin crew, couldn't communicate with my husband because I was in a situation that I can't cope with - then you would say I was low-functioning.

"All autistic traits are human traits. Everybody has felt socially awkward, ­everybody has had trouble communicating, everybody has been overwhelmed. It's just that the volume's often dialled up or dialled down.

"I think [the term] 'on the spectrum' is fine if somebody is truly on the spectrum, but we're not all a bit on the spectrum in the way that people say." Since Odd Girl Out, Laura's autobiography, hit bookshelves, she's been flooded with messages of thanks from autistic women and their families all over the world, a demographic she claims is practically imperceptible to the public eye.

"There are lots of gender issues around autism. If I asked you to name one well-known autistic woman, would you be able to? You could probably think of Saga from [TV series] The Bridge, but that would be about it, whereas with men, you could kind of list them and list them.

"There's this weird resistance to women who get diagnosed with autism, for some reason. I think it's partly because we don't project the view of autism that other people think is real.

"I'm getting so many comments and messages and letters from autistic women saying: 'Thank you for showing who we are and how we are.' Lots of mums of autistic girls have got in touch and they're saying: 'My daughter's 14 and I've given her your book.' I think it's really important for them to see you can get married, you can have kids, you can have a successful life.

"Obviously, everything I say about women and girls is important for boys, too, but I think that boys are currently getting better representation. There is no reason why you can't be a kind of country life mum and also be autistic."

Two years ago, when Laura told her children - Lucie (27), Tatti (24), Jack (21) and Toby (20) - about her diagnosis, the response to news of their 'Rainmum' was instantly positive.

"Literally, the first one said: 'Oh, can we go and count cards in Vegas?' And the second one said: 'What's for supper?'" she laughs.

"By the time I found out, my eldest daughter was 25, the youngest was 18, so I'd kind of done a lot of that mothering. I think if I'd found out when my children were four and five, then it probably would have been very different.

"My children are all very quirky," she continues. "One has EDS and also a lot of autistic traits, but he doesn't want to have an autism diagnosis at the moment, and that's fine."

Above the clatter of coffee mugs and chatter of fellow guests in the hotel lobby where we've met, Laura expresses her hope for better awareness of the sensory challenges often faced by autistic people by officialdom in the coming years. And she praises the headway that has already been made by companies like Odeon Cinemas and SuperValu in Ireland, both of which provide services with lowered levels of sensory stimulation.

"You wouldn't build a new building now that wasn't wheelchair accessible," Laura argues. "Basically, the more that's understood about autism, the more naturally the world will adapt.

"Mainly, it's people understanding that if you see a child throwing what you believe is a tantrum, or an adult behaving strangely; if people have more of an understanding of what autism is, then they'll recognise it as somebody who's autistic.

"I think the hardest thing for mums or parents of kids with autism is that they're dealing with a child who's having an epic meltdown, and then they have other people walking past telling them what a bad parent they are."

Although she wants society to know that every autistic person is different, after a lifetime on the fringes, the eponymous Odd Girl Out confesses that she's happy to have found her place through her diagnoses.

"I always felt on the sidelines," Laura admits. "I never quite felt I could be part of something. Now I still feel on the sidelines, but I feel kind of happily on the sidelines.

"With autistic women, I've really found my 'we', and that is amazing because I could never say before 'we feel this' or 'we feel that' because it was always me on my own. I feel as if I've found my place, and it's actually a pretty good place to be."

As for her husband, to whom the book is dedicated, Laura says her autism diagnosis, and even the condition itself, has ironically brought them closer than ever before.

"In the vast majority of 20-year marriages, people are difficult," shrugs Laura, whose first marriage ended when she was 25. "Tim has a terribly creative temperament. I think if you really love somebody, and you're bringing up children together and you're working together, you kind of accommodate each other's foibles, don't you?

"On the flip side of it, I always tell him what I think. So whereas men complain that women will say 'I'm fine' if they're not fine, I would never do that. He can tell me that an outfit looks dreadful and I'll be like: 'Thank you - you saved me from going out looking dreadful.' Equally, I could see that my neurotypical friends would be sobbing wrecks in the corner if somebody said that to them.

"The things that used to drive Tim insane about me, or me insane about him, we've both come to realise, is a result of our different neurotypes," she concludes, "a bit like the Mars and Venus thing. He's learned a lot about autism and I've been able to learn a lot more about neurotypical life, so I think that has brought us much closer together. We have the language to understand our differences now."

'Odd Girl Out: An Autistic Woman in a Neurotypical World' by Laura James, published by Bluebird, is out now

Portraits by Steve Humphreys

Irish Independent

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