Adults with autism are challenging traditional views and building a new ‘civil rights movement,’
LANGLEY, B.C.— Alanna Whitney was a weird kid. She had a strange knack for pronouncing long words. Anchovies on pizza could send her cowering under a table. Her ability to geek out on subjects such as Greek mythology and world religions could be unsettling. She drank liquids obsessively, and in her teens her extreme water intake landed her in the hospital.
Years later, she found a word that explained it all: autistic. Instead of grieving, she felt a rush of relief. “It was the answer to every question I’d ever had,” she recalled. “It was kind of like a go-ahead to shed all of those things I could or couldn’t do and embrace myself for who I am.”
So it came to be that Whitney, 24, was arranging strawberries and store-bought cookies on platters at the Queensborough Community Centre in New Westminster, B.C., for a celebration of “Autistic Pride Day,” her shoulder-length hair dyed mermaid green to match her purse and sandals. A bowl of orange earplugs sat nearby in case any of the guests found the ambient sounds overwhelming.
Whitney is part of a growing movement of autistic adults who are finding a sense of community, identity and purpose in a diagnosis that most people greet with dread. These “neurodiversity” activists contend that autism — and other brain afflictions such as dyslexia and attention deficit/hyperactivity disorder (ADHD) — ought to be treated not as a scourge to be eradicated, but rather as a difference to be understood and accepted.
The movement is not new. But it has gained a foothold in the cultural mainstream as the discredited debate over autism-causing vaccines has subsided and the voices of autistic adults have emerged, amplified by social media and the blogosphere.
“The new autistic person is being born in media, and it’s someone who is very empowered, even if they need a keyboard to speak,” said Steve Silberman, a journalist and author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, book coming out next month.
Some longtime autism activists are wary of the neurodiversity movement, which they say promotes the idea that autistic people are not sick but simply quirky and geeky. Autism, which affects one in 68 American children, ranges along a very broad spectrum, with the most severe forms leaving people unable to speak and in need of assistance with everyday functions.
Even milder forms leave people struggling with spoken language, re- petitive behaviours such as flapping or rocking, and extreme responses to routine sensory experiences. Medical costs and therapies for autistic children typically cost families thousands of dollars a year, according to the U.S. Centers for Disease Control.
“I would love my kids to be functioning enough to say, ‘I don’t need to be changed,’ ” said Kim Stagliano, the mother of three autistic daughters and a prominent advocate of the widely discredited idea that childhood vaccines contribute to autism. Stagliano’s daughters are so impaired that she must bathe them and “tend to their monthly feminine needs.”
Neurodiversity is appealing, she said, because “it’s a more palatable way to look at a diagnosis that scares the living life out of anyone who sees it. They want to think that sound in the night is a branch against the window, not a robber. But autism is that robber.”
Neurodiversity advocates object to the approach of many mainstream autism activists, including the large non-profit Autism Speaks. Such groups, they say, are more focused on cures and making autistic people act “normal” than on improving their quality of life.
Neurodiversity advocates, by contrast, consider people with autism a minority group, albeit one with extra challenges that might need accommodating. They compare themselves to the gay rights movement and to the protesters trying to improve police treatment of African Americans.
“It’s like an emerging civil rights movement,” said John Elder Robison, an autistic writer whose memoir, Look Me in the Eye, was a bestseller. Among his best-known accomplishments is developing special-effects guitars for the rock band Kiss. He now serves as the neurodiversity scholar in residence at the College of William and Mary in Virginia.
“Neurodiversity is the recognition that autism, dyslexia, ADHD are just inborn neurological differences,” he said. “Those differences carry with them gift and disability. Society needs the exceptional thinkers that the neurodiversity world produces.”
Neurodiversity advocates say there are wonderful things about the autistic mind. Some people have an unusual ability to notice patterns, a skill valued in the technology industry. They can become deeply immersed in their interests. They often experience sensations more intensely. And they can be literal — a quality that interferes with their ability to understand tact and sarcasm, but can come off as charmingly humble and direct.
The movement is thriving online, with blogs and Twitter chats devoted to everything from autistic representations in film to autistic women to people who are both autistic and gay or transgender — referred to as “neuroqueer.”
Many in the community say they get along particularly well with other autistic people, and not only because of their shared struggles and common traits. There is no pressure to maintain eye contact, which many autistic people avoid. They don’t mind if their companions need to rock or flap — a soothing or expressive repetitive motion they refer to as “stimming.”
“It’s not that I don’t have neurotypical friends too, but there’s an immediacy and lack of necessity to, I guess, explain everything. Kind of like speaking the same language,” said Heather Ure, a former teacher who blogs at theNeuropunk.com.
Ure said she realized she might be autistic after her son was diagnosed at age 8, and a short time later received confirmation from her psychiatrist. Then her husband, a software engineer, realized he, too, was probably on the spectrum.
Because receiving a formal diagnosis as an adult can involve an expen- sive battery of tests not covered by health insurance, many autistic people who do not need to qualify for special services self-diagnose using information they find online and other places.
The movement has recently logged some policy victories. A Washington, D.C.-based non-profit called the Autistic Self Advocacy Network successfully pushed Congress last year to rename the reauthorization bill for autism funding. Instead of the “Combating Autism Act,” it was dubbed the “Autism CARES Act.” The group also led a successful campaign to increase the minimum wage for disabled workers at firms that receive federal contracts.
The network’s Vancouver chapter is particularly active. As head of that chapter, Alanna Whitney has focused on bringing the thriving online culture into the real world. That’s why she organized a gathering for Autistic Pride Day, which is celebrated every year on June 18.
It was a modest affair, less a celebration than a quiet conversation over carrot sticks and cheese cubes. Predictably, perhaps, it was awkward at first.
One young woman introduced herself and then flipped open a thick volume titled Classical Humanities, which she read for the next three hours. A young man with a long red ponytail observed that Whitney’s business cards were not quite the right shape.
“I have the feeling that I know some of you, but that you have changed your appearance since I saw you last,” he told the group.
Eventually, the group settled into a natural rhythm. The conversation veered from Game of Thrones to supermarket waste to literal interpretations of the Bible. A compact man in a black baseball cap participated enthusiastically by scribbling his thoughts and questions on a small notebook that he thrust around the table. A tiny woman with black hair down her back chimed in quietly, her hand stroking a plush dog inside her purse. A couple of guests played with “stim toys” — little puzzle-like gadgets to chew or subtly occupy their hands.
Some expressed relief that they did not have to edit their geeky conversations, or make eye contact or hold back on stimming.
“Social interaction that is not costly, energy-wise” is how Eric King, 32, a data analyst and father to a 3-monthold, described it.
Leeta Gill, 34, a college student with a blunt fringe of bangs and darkframed glasses, said she had joined a number of autistic groups even though she was generally satisfied with her work and family life. “Having a best friend,” she said, “is difficult for me.”
Whitney glowed. The first time she came to a gathering like this, she said, she had the distinct feeling that these were her people.
Growing up in rural Ontario, Whitney did not have a word for her unusual behaviour. Worried about spoiling Whitney by giving in to her nitpicky demands, her mother held back in a way that both women now feel bordered on neglect.
“If we had known she was autistic,” her mother, Wendy Hunter, said, “a lot of things would have been different in our lives.”
As a child, Whitney also experienced what she and others would call the positive aspects of autism. She plowed through books on obscure subjects. She had an uncanny memory for idioms, which she would interject randomly into conversations: “Well, you’re damned if you do and damned if you don’t.”
There were also the tantrums, which sometimes tore the family apart, she said. The same was true of her aversion to certain food textures, which some family members saw as picky. She had difficulty making friends and endured bullying, she said. Despite being a good student, she dropped out of school.
As an adult, Whitney struggled to hold down a job. But since her diagnosis three years ago, she has tried to follow her bliss. She has immersed herself in art — not just painting, but photography, poetry, keyboarding, singing jazz and blues and even rapping. The walls of the home she shares with her mother are filled with images of hands and brains clipped from magazines. She is planning to start a soap-making company to help make ends meet.
She has challenges, she said. For example, after dinner, she needs a sweet to “literally remove the residue and grease from my tongue.” Without it, she sometimes dissolves, rocking vigorously or crouching under a table. Still, she says, hers is a beautiful life. “I love being autistic,” she said. “It’s fun.”