People stared from the moment they entered the drugstore: There's a brat with a bad mother, the looks said. Six-year-old Griffin Lambert insisted on going down every aisle, touching each item on the shelf, opening jars and breaking seals. His mom, Andrea Bradford-Lambert, tried to distract him in a quiet voice, but she knew he was tired from school.
At the checkout, Griffin was pushing the soap across the scanner too quickly for the price to register, and the frustrated cashier yelled at him. Griffin started screaming. "Once he's started a meltdown," his mother sighs, "there's no going back."
Helplessly, Andrea flashed the card she now carries in her wallet for these occasions: "My child has autism," it reads. "He may communicate in ways that seem unusual to you."
The card doesn't always work, but this time the cashier apologized. "I felt vindicated," says Ms. Bradford-Lambert, who lives in Barrie, Ont. "She was very nice to Griffin after that."
At home, he reads books, uses words like "ubiquitous," and recites facts with a photographic memory. But the shoppers saw only one side: When his mom finally dragged him out the door, Griffin was still hollering and trying to lick the ice-cream cooler.
Not long ago, families of kids with autism hid behind closed curtains to avoid public judgment. Today, card-carrying parents such as Andrea-Bradford Lambert want their children to be seen as different, rather than disabled.
They have been joined by an increasingly vocal group of adult autistics (as they prefer to be called) who say they do not want to be cured. They say autism should be seen as part of the "neurodiversity" needed to evolve smarter human beings, just as biodiversity helps life flourish on Earth.
Evolutionary advantages aside, their perspective also becomes a question of human rights: Who decides what kind of people ought to exist?
"We need to get away from the idea that there is only one optimal way to be human and that we all have to aim for that. You'd think we'd know better by now," says Michelle Dawson, an autistic and a researcher at the Rivière-des-Prairies hospital in Montreal. Her work has shown the IQs of people with autism to be higher than previously believed.
Ms. Dawson asks, "Are a person's rights contingent on them having a certain kind of brain?"
The number of children being diagnosed with some form of autism is now roughly 1 in 150, a significant rise since 1980, although there is considerable debate over why.
Autism is diagnosed along a broad spectrum and manifests itself differently in each individual. Intellectually precocious children with social difficulties such as Griffin Lambert, who have Asperger's, a milder form of the disorder, are grouped together with kids who injure themselves and cannot speak, dress or wash on their own.
People with more debilitating forms of autism may never live independently. Others mingle within the "neurotypical" mainstream, perhaps seeming quirky but often contributing unique abilities.
Autistics and their families are not alone in challenging how society defines disability. The deaf community has debated whether children should be given implants to help them hear - some people argue that the implants leave them in limbo, cut off from deaf culture while still outsiders in the hearing world.
But the idea that the neurodiversity of human beings warrants the same protection - and even celebration - as, for example, racial diversity is a controversial concept, particularly for parents with a child at home who can't speak or hug them, who are fighting for publicly funded treatment for their kids, a prominent issue in the recent Ontario election.
Autistic activists such as Ms. Dawson are demanding new thinking about a disorder that has been called worse than cancer, a blight in a society that assumes abnormalities need fixing. The United States recently devoted $1-billion to "combat" autism, including research into genetic screening that might weed it out in vitro.
But definitions of normal have always shifted, autistic activists say, pointing to 1970s medical books that listed homosexuality as a disorder. In their view, forcing people with autism to be more neurotypical is like trying to make left-handers right-handed.
Some parents and autistic adults are eschewing words such as "disorder," preferring to be called "differently wired." They speak of an autistic heritage - Albert Einstein's theory of relativity, Wolfgang Mozart's music and even Microsoft. (Though Bill Gates has never said he has Asperger's, autism bloggers have diagnosed him on their own.)
Traditionally, autistics who cannot speak have been considered mentally delayed, but technology and research have proved otherwise. Amanda Baggs, a non-verbal autistic, has become a star on YouTube by using voice-dictation technology on her computer to produce a film about her life called In My Language. So far, it has been viewed by more than 300,000 people.
The movie shows her rocking back and forth, rubbing her face in a book, while humming one long note - her language, she says in the onscreen text in the film, is "about being in constant conversation with every aspect of my environment." Yet since she doesn't speak words aloud, people do not believe she is thinking: "They doubt I am a real person at all."
Her writing is so articulate that some viewers accused her of feigning autism until she posted her medical records on her blog.
On the other hand, New Brunswick lawyer Harold Doherty has been accused of "endangering" autistics by detailing the life of his son, Conor, on his blog, and advocating for easier access to therapy. Conor, 12, has severe, low-functioning autism. He communicates verbally through sporadic shrieks and requires constant care; at school, he receives behavioural therapy in a separate room.
One afternoon, while his father was momentarily distracted on the phone, he wandered out the door and across a busy intersection. "He doesn't understand the risks of cars," says Mr. Doherty, who worries that some day his son might be abused and unable to tell anyone. Conor often bites his mother and has pulled his father's arm away from the steering wheel while driving.
"But they don't like us to talk about that," Mr. Doherty says. He believes that people who make the case for neurodiversity often trivialize autism and deny the difficulties faced by families with disabled children. People with Asperger's don't have any business telling him what kind of treatment his son needs, he says.
"Some of them are gifted. Great. But my son isn't. And many autistics aren't," he says. "If I could cure my son with a wave of my hand, I would do it in a heartbeat."
A fine balance
Tanya Stephenson sometimes lies on the floor with her son, Tyler, 5, and eyeballs marbles as they roll across the floor, stepping for a moment into the world as he sees it.
"You've just vacuumed your floor, you think it's pretty clean," she laughs. "There's a little piece of paper here, and bit of food someone dropped there. So when the marble knocks into stuff, it goes in different direction. It is pretty cool."
Tyler can lie there for hours with his face squashed to the floor, marble after marble. This intense concentration is a symptom of his autism diagnosis, which is medically defined by a string of letters - ASD/PDD-NOS, a designation that in itself speaks to the complications of defining autism. Within the autism spectrum, the acronyms stand for "pervasive development disability, not otherwise specified," which means Tyler has some of the characteristics of autism, but, unlike Conor Doherty, not severely enough to be diagnosed as strictly autistic.
For a long time, Tyler didn't speak, and when he did, he echoed language that he heard, often quoting sayings from televisions shows in context. He used to sit for long spells staring at an empty space in the wall. His mom would wonder: Can he be happy doing that? "Maybe he saw something that I certainly couldn't see," she says.
The Stephensons, who along with the Lamberts have helped form a Barrie, Ont., playgroup for families with autistic children, decided to try behavioural therapy, which uses intense repetition and modelling to teach language and life skills. Tyler gets 20 hours a week from a therapist. Recently, his parents taught him to hold a pencil by putting it in his hands 10 times a session, five times a day, for three days.
He now tells his mom that he loves her and gives hugs. "Maybe people will say, 'Well, you taught him to hug you.' But isn't that what we teach all our kids?" Ms. Stephenson says. Her two other children, Jaymie, 7, and Tyler's twin sister, Hannah, are not autistic.
Each time they undo a behaviour that identifies Tyler as autistic, they wrestle with the choice. When he scores in a video game, for example, they have taught him to squeeze his hands together instead of flapping his arms wildly.
"And we debate this," Ms. Stephenson says, "because if you're at a football game, you see some pretty wacky stuff happening when people are so excited because someone scores a touchdown. They look more odd than my son does. So why don't we try to squash that behaviour?"
In the end, while Ms. Stephenson knows that some autistics and families would criticize her for it, she wants Tyler to have a relationship with his parents, to enjoy the magic of his world while still participating in theirs.
"I am not trying to change that really unique part of him," she says. "I am saying this is who he is, this is the way he is and if you understand him, you will find he can bring a pretty neat perspective."
But how does that perspective get communicated, she asks, if he doesn't have the social skills to share it?
Many scientists are reaching a similar conclusion: Erasing all traces of autism might short-circuit human intelligence, potentially editing out the capabilities that create mathematicians, engineers and software designers.
A smart cure might instead tinker with the autistic brain, targeting the trouble spots while preserving its strengths - the ability to focus, to see detail sharply and to distill a complex environment into simple parts.
Some neuroscientists theorize that autism starts with a genetic glitch that skews the connections in the brain over time, improving some, but disabling others. If so, science may find a way to jump-start the stalled connections, possibly with drugs, without snipping the improved wiring.
"My hope is that we can find a way to have our cake and eat it too," Cornell University neuroscientist Matthew Belmonte says. "That is, we can preserve those unique and very productive perceptual and attention capacities, but combine a way to share those gifts with the broader social world."
Dr. Belmonte, who has a brother with autism, compares it to mingling at a cocktail party, surrounded by conversation but always thinking of that profound and pithy rejoinder 10 seconds too late, after the subject has already changed. "We've all had that experience," he says. "Picture all of life being like that."
The cure he envisions would allow what is profound and pithy about autistic thought to enter the conversation.
But even this approach raises unwieldy ethical and scientific complications: How does one safely "nudge" a child's brain? And if that child may grow up to be an adult comfortable and even proud of his autistic traits, who has the right to "tinker" in the first place?
The cultural perspective on autism, says Laurent Mottron, a prominent researcher at the University of Montreal, has been prejudiced by the way science views difference: When a person with autism performs a memory task as well as a neurotypical person, but using a different part of his brain, this is typically described as a deficit - not, as Dr. Mottron suggests, simply "a different way of being a human being."
'Yakkety-yaks'
While people promoting neurodiversity object to the idea of a cure, they are not opposed to technologies and other measures to help autistic people get by. However, they say the focus should be on helping autistics rather than making them more acceptable to "neurotypicals."
In blog discussions, autistics sometimes even speak of themselves as a "superior species." Neurotypical people get called conformists or, as one prominent autistic put it, "yakkety-yaks."
A popular quote from Temple Grandin, an acclaimed American agriculture researcher and bestselling author with autism, describes the world if autism was eliminated: "You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done."
The overtone that autism endows people with superpowers further fuels the tension between the parents of disabled children who want cures (some of whom, like Mr. Doherty, accuse the neurodiversity camp of being ashamed of its "lower-functioning members") and adult autistics who say they would not want to be changed. The latter position is making its voice heard in literature and art.
In his new biography, Look Me in the Eye, John Elder Robison describes a difficult (although creative) childhood, of knowing he was odd without understanding why, and the relief of being diagnosed with Asperger's in his 40s. But in an e-mail, he makes it clear that while he respects the choices of others, he has no interest in being cured. "We need understanding and empathy," he writes, "not a medical 'cure.' "
Back in Barrie, mothers such as Andrea Bradford-Lambert and Tanya Stephenson are busy with the practicality of raising boys with autism, also hoping that society will eventually understand and appreciate their sons for their strengths and weaknesses.
At a recent hayride to pick apples, their group shared the wagon with a seniors club. Ms. Stephenson informed them at the start to be prepared: "Our kids may act strangely. But they are good kids and we are good parents."
Sometimes people just need to be educated. Soon, for instance, Ms. Bradford-Lambert will show her card to the mall Santa so Griffin can sit on his lap without bells being jingled in his face.
"I think we're moving a tiny bit closer to acceptance," Ms. Stephenson says. "You can learn a lot of really cool things if you live and flow through different worlds. And who is to say that our world is the normal world?"
Erin Anderssen is a feature writer for The Globe and Mail.
Erin Anderssen