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 realizes he is a ghost.
“It was a revelation,” she said. “Once I understood what autism was, there was no hesitation. I was like: ‘Yep, that’s me, 100 percent, 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,” she said. “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 that 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 on 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 the US, and is a critique of government and policy failures.
The common thread running between the books is that autism is a disability that is managed rather than treated, that the voices of autistic people must be listened to, and that without acceptance and appropriate provision, autistic people continue to 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,” Gibbs said. “There has been a really collegiate and collective feeling between us, rather than a competitive one.”
She said that her book was painful to write.
“It was incredibly difficult, like condensing a decade of therapy into a year and a half of writing,” Gibbs said. “It was cathartic in many ways, but also traumatic. I was reliving some really difficult times, admitting things to myself for the first time and then putting them on a page. It was very confronting — I had nightmares while I was writing it — but those memories feel less potent now. I’ve robbed them of their ability to hurt me.”
With candidness and humor, 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.
Her diagnosis completely transformed her relationship with her mother.
“It was like the biggest penny in the world plunging to the floor,” Gibbs said. “Now we have a much more honest and close relationship, she’ll go in to bat for me and stick up for me.”
She has also had unwavering support from her husband and close friends.
“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 is known as “high functioning,” meaning she does not fit the stereotype of autistic people as non-communicative and unable to form relationships.
That has led to misunderstandings.
“The fact that I can articulate masks my need for a lot of care,” she said. “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.”
The ability of high-functioning autistic people to “mask” traits can mean they are not taken seriously by medical professionals.
“We can make eye contact, although it’s painful, so the GP [general practitioner] might not refer you,” Gibbs said. “And even when you get a diagnosis, you’re just sent on your way. That’s it. You’re left adrift, without any support to process the diagnosis.”
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,” she said. “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.”
There are about 700,000 people in the UK on the autism spectrum, as reported by the National Autistic Society. It lists difficulties with social communication and social interaction, repetitive and restrictive behavior, sensitivity to light and sound, anxiety and meltdowns among challenges that autistic people face. The male-to-female ratio for autism is 3 to 1, and autistic children are three times more likely to be excluded from school, the society says.
Understanding of autism has come a long way since Leo Kanner published a landmark study in 1943. Although he noted that autistic children were born with an “innate inability” to form typical social contact with others, he pinned some blame on parents, claiming such children were “kept neatly in a refrigerator which didn’t defrost.”
“He described the parents of these children as being cold and mechanical, and then the phrase ‘refrigerator mother’ took hold,” Limburg said. “It sounds absolutely shocking now, but for a long time it was all the mother’s fault.”
Autistic people are “not failed versions of normal,” Garcia said. “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 traveling around the US to meet other autistic people, he came across many who he said 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 color are particularly marginalized, Garcia said.
“There have been more than a few incidents of autistic people of color being harassed or shot by police,” he said.
A report last month said that a 21-year-old autistic student, Xavier Hernandez, died after being restrained by teachers at a special needs school in Texas.
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,” he said.
He welcomed the widening conversation on neurodivergency, including his, Gibbs’ and Limburg’s books, along with The Reason I Jump, a film released in the UK last month.
“It’s good that there’s more awareness, but I want acceptance, I want solidarity and I want justice for autistic people,” Garcia said.
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.”
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