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Joined: 25 Aug 2013
Age: 63
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Location: Long Island, New York

27 Jun 2021, 8:40 am

’We don’t need to be cured or fixed’: writers speak out on autism

For Sara Gibbs, her diagnosis of autism at the age of 30 was like the final scene of the 1999 movie The Sixth Sense when Bruce Willis realises he is a ghost. “It was a revelation. Once I understood what autism was, there was no hesitation. I was like: ‘Yep, that’s me, 100%, there’s no two ways about it.’”

Not only did she suddenly understand herself, she also had a new understanding of her father, who had died of cancer a few years before Gibbs’ diagnosis. “His rages were, very clearly to me now, autistic meltdowns. He didn’t understand it, and I didn’t understand it. Growing up, I thought my dad hated me. I don’t believe that, but he couldn’t cope with noise, and I couldn’t stop making noise – and our autistic traits were setting each other off. And if we’d known, we might have known how to manage it.”

Gibbs, 33, is a successful comedy writer whose credits include Dead Ringers, The Now Show and Have I Got News For You. But growing up, she felt life had a set of nuanced rules that no one explained to her. She was always getting things wrong, misreading cues, oversharing, overstepping and often fearful.

Now she has written a book, Drama Queen, whose title and chapter headings (for example, Crybaby, Weirdo, Show-Off, Shit-Stirrer, Inappropriate) reflect some of the labels pinned to her over the years.

It is one of three very different books about autism published this summer. Drama Queen is a touching and funny memoir. Letters to My Weird Sisters by Joanne Limburg – who was diagnosed as autistic in her early 40s – is addressed to and is about four female figures from history who were also “misfits”. We’re Not Broken: Changing the Autism Conversation by US political journalist Eric Garcia – diagnosed as a child – is based on encounters with autistic people across America, and is a critique of government and policy failures.

The common thread running between the books is that autism is a disability which cannot be treated but can be managed, that the voices of autistic people must be listened to, and that without acceptance and appropriate provision autistic people will languish on the margins of society, with many seriously disadvantaged. “The three books are wildly different but we’ve been going through it together and amplifying each other. There has been a really collegiate and collective feeling between us, rather than a competitive one,” said Gibbs.

Her book was painful to write, she said.

With candidness and humour, Gibbs describes her unconventional childhood, struggles to be accepted by her peers at school, difficulties in romantic or sexual relationships, challenges at work, and caring for her father in his last months.

“Autism isn’t an illness, it is a totally different neuro type – so managing my autism is managing who I am,” she said. Gibbs is what’s known as “high functioning”, meaning she doesn’t fit the stereotype of autistic people as non-communicative and unable to form relationships.

That has led to misunderstanding. “The fact that I can articulate masks my need for a lot of care. Someone will say to me, ‘Oh you must be very mild’ or ‘we’re all a bit autistic’. It’s very dismissive. There isn’t such a thing as being a bit autistic – you either are or you aren’t.”

Limburg, whose book examines autism through a feminist prism, said her diagnosis nine years ago came as a relief. “There was something out of step about me when I was a child, and then as an adult I was diagnosed with depression, anxiety and obsessive compulsive disorder. So I knew things weren’t working.

“It was a relief to know that I wasn’t mad or just making a big fuss about my life, that my sense of being other wasn’t all in my head. But there was also a measure of grief for all the times you’ve been misunderstood or you’ve just been horrible to yourself. Being a human is difficult and no one gives us a manual.”

Autistic people are “not failed versions of normal”, said Garcia. “We don’t need to be cured or fixed. Do we have challenges? Yes. Policy should not be focused on curing autistic people but on helping us live more fulfilling lives.”

In two years of travelling around the US to meet other autistic people, he came across many who were “languishing, or living in poverty, or who have trouble finding employment or difficulty in graduating from school – or going to school at all. A lot of the autistic people I interviewed were wonderful, brilliant, intelligent, kind and industrious but they still had trouble succeeding. And a lot of times it’s because of the lack of systems in place that allow them to succeed.

Autistic people of colour were marginalized, he said. “There have been more than a few incidents of autistic people of colour being harassed or shot by police.”

Garcia’s book contains descriptions of his own experiences. “There were parts that were definitely cathartic, and parts that were really painful. It made me feel naked, like there’s nowhere I can hide.”

The assumption that non-autistic people knew what was best for autistic people needed challenging. “It is autistic people who live with the condition of autism – for all its positives and negatives – as well as with the consequence of any collective action meant to help them,” his book concludes. “If there is going to be a policy that has seismic impact on their lives, they deserve to have a say in it, no matter how they communicate.”

Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman