Words by Mark White, Pictures by Nick Cubbin and Damien Pleming
What if the world stopped seeing autism as abnormal? Many people with Asperger's syndrome or autism embrace their condition. They seek respect for 'neurodiversity', not a cure.
Even after Dawn-joy Leong was diagnosed with Asperger's syndrome in her early 40s, she felt there was something missing. The description was too pathological, too focused on the gaps. Everything she valued about herself, including how she saw the world – patterns within patterns – was called an impairment.
She didn't think she was impaired. She has challenges, sure: being in a crowded room is like experiencing a Wagner opera, a bombardment of sound from every direction. She'd rather be somewhere quieter, where she can distinguish conversation as if she is picking out the harmonies of a four-part Bach piece.
Leong, an artist, was researching autism in 2007 for her multimedia composition Scheherazade's Sea, which portrays her world from the inside out. Just like the famous storyteller, she survives the social world by spinning narratives others want to hear.
Dawn-joy Leong with Lulu
“So has many an Autistic person,” says the slight 50-year-old, sitting on a sofa in a Rose Bay apartment where she's moved to finish her thesis in art, design and media at The University of New South Wales. Her assistance dog Lulu, a rescue greyhound, is lying beside her, all angles and haunches.
In her research one day, she came across 'neurodiversity' for the first time. A radically simple concept, coined by Australian sociologist Judy Singer in the 1990s, neurodiversity states that conditions like autism are natural brain variations, not brain malfunctions.
“Finding out about neurodiversity was life-changing,” says Leong. “I wasn't ill. It's just a neurological difference. It's like having a Mac computer operating system when other people run Windows.”
She stopped using labels like “high functioning” and “low functioning”. They define a person's abilities by how much they can mimic “neurotypical” behaviour – the name given to people with neurologically common brains.
Autistics experience the world differently. People call her high functioning, saying, “You don't seem Autistic! You're so normal!”
Relating this, she looks annoyed: “It's not a compliment. To me, it's like saying, 'You don't seem to be Chinese, you're so Western!’”
“I want to show that autism doesn't mean limited.”
The Autistic self-advocacy movement began to form in the early days of the World Wide Web, 30 years after the first autism groups were founded by parents. The community capitalises the A for Autistic, just as the Deaf community does with its D.
In 1994 there were already online spaces where people “on the spectrum” congregated, according to 47-year-old Tony Langdon, from Bendigo in Victoria. A year later, he set up a web page telling of his life as an Autistic gay man, at a time when the focus of autism was on children.
Langdon was diagnosed with Asperger's Syndrome at 24. That explained why he'd always had trouble fitting in and why he'd developed tricks to cope with sensory sensitivities. Over time, it has given him a sense of identity.
Tony Langdon
A casual primary school grounds-keeper, Langdon has trouble hearing words in the presence of low-frequency noise and struggles with some goal-oriented tasks. But he can be rational in a crisis, which must help in his role as a volunteer fire-fighter. He can 'hyper focus' and sees patterns which give him an unusual window on the world.
Listen to Tony Langdon: 'Autism is a part of who I am.'
He's good at some things and bad at others. He doesn't like repetitive work, or sitting inside playing video games. Despite coordination issues, he likes sports. He also enjoys meeting people.
“I want to show that autism doesn't mean limited,” he says, “or even conforming to preconceived notions.”
“I ran my fingers over its trunk, feeling every bump and fell in love with what I saw.”
Being able to distinguish patterns in anything – sounds, sights, ideas – is common to Autistic people. Elinor Broadbent, of Langwarrin in Victoria, uses a picture taken in Dunolly to illustrate how she sees the world. Most people would glance and see a dead tree, the 36-year-old says. But from 50 metres away, she had a different reaction.
“I could see the cracks in the trunk, the weather-worn surface and the patterns the lines made, as they curved around together,” she writes, via email. Typing gives her room to think.
Elinor Broadbent – and the tree picture
“As a sensory seeker, I ran my fingers over its trunk, feeling every bump and pit and fell in love with what I saw. So I took a photo, to capture that moment, and it still leaves me with a sense of awe.”
As a service supervisor for Coles, Broadbent says her autism brings bonuses and negatives to her work. She's good with routines and pays attention to detail. Observing patterns has helped her teach time management to other supervisors. But she finds it difficult to filter out noises, using coping strategies such as earplugs.
What is neurodiversity? Watch Elinor Broadbent explain.
At any given time in her job, she hears registers opening and closing, music playing, keys rattling, bags shuffling, feet scuffing on the pavement outside, car doors opening, people talking, the staff room door at the other end of the store opening and closing, noises from other departments and more. Her managers support her when her senses are flooded, which makes a “huge difference”.
She says Aspie supremacists "dream of islands full of people with Asperger's".
Neurodiversity received a profile boost with the recent publication of US writer Steve Silberman's Neurotribes. He argues that people with differently wired brains have always existed – some of them geniuses because of their autism, not despite it – and details how diagnostic criteria have expanded. The rate of autism has risen from 1-in-2000 in the 1970s, to 1-in-68 this decade.
Meanwhile, the Autistic Self-Advocacy Network (ASAN) was founded in North America in 2006, to promote neurodiversity and give Autistic people a voice in discussions about autism. Its slogan is “nothing about us, without us”.
“Don't try to cure me. Try to understand me.”
Another major US advocacy group, Autism Speaks (AS), has come in for sustained vitriol over its campaigning. “Autism Speaks wants you to hate Autistic people by demonizing autism as a fate worse than death,” reads a YouTube comment posted on one of its documentaries. “They tell you it steals your children and ruins marriages. How do you think it feels to be Autistic and hear that?”
Another comment: “Don't try to cure me. Try to understand me.”
Neurodiversity activism is not like that in Australia. There's no local equivalent of AS. Mainstream autism organisations have toned down their rhetoric from that seen six years ago in a fundraising advertisement from Autism Awareness Australia (AAA), which darkly warned that “30,000 Australian kids have been kidnapped – by autism”.
Local ASAN head Katharine Annear, diagnosed with Asperger's Syndrome in her 20s, calls the ad part of a “shock, horror” approach that makes Australians fear autism. The 42-year-old, who speaks via Skype from her Adelaide home, is a part-time lecturer at Flinders University who also works in the disability field. She has swept-over hair, dyed different colours, and exhibits slight weariness from decades of campaigning.
Katharine Annear
A wooden box was built to lock up distressed clients at a Victorian day care centre run by Autism Spectrum Australia (Aspect), reported The Age. A 10-year-old boy was caged in a Canberra public school in March, according to the ABC. And The Sydney Morning Heraldreported a 16-year-old boy was found chained to his bed in Sydney's Blacktown in November.
Other spaces used to seclude children with disabilities were listed by disability advocate Julie Phillips, in an August 2015 submission to the Senate Education and Employment Reference Committees. They included a locked cupboard, outdoor pens and a disused schoolroom otherwise used for junk.
One Special Developmental School, the submission alleged, had placed children in a room, the size of a disabled toilet, with wooden walls and no windows. It was bolted from the outside.
"If you were non-verbal, a young child, and in grief and pain all day, wouldn't you be violent?"
Annear says sensory challenges can be suddenly overwhelming. Frustration with not being able to communicate can lead to challenging behaviour. Leong poses the question: if you were non-verbal, a young child, and in grief and pain all day, wouldn't you be violent?
ASAN-AUNZ, which has 170 members, engages in systemic advocacy – submissions to the NDIS, for example, on how to include Autistic voices in services – and social media campaigning. Annear says new Facebook groups run by other Australians form almost daily.
Melbourne has a growing media and arts scene for younger people who are less interested in the local ASAN affiliate's patient coalition-building. Monash University student Julia Pillai is founder of the Great Minds Don't Think Alike podcast, which discusses neurodiversity from the view of neurodiverse people.
"People say they 'understand' why a parent would chain up their son."
“We are stereotyped and objectified [in the media],” she says.”We tend to be either put in the gutter, such as when people say they 'understand' why a parent would chain up their son when they went out, or on a pedestal – insert genius-savant trope here.”
That kind of binary thinking isn't helped by the description of autism as low- or high-functioning. In his book, Silberman quotes British psychiatrist Lorna Wing: “The spectrum shades imperceptibly into eccentric normality.”
Joel Wilson, 29, from Perth, says, “I function well at some things and horribly at others. I know Autistics who are pre-verbal – don't speak – but, through accessible technologies, have university degrees.”
Within the Autistic community, there are differences over how to protest everyday indignities. Wilson was called a “scab” after he wouldn't ridicule Aspect online for its day-centre wooden box. But he asks, “If a large organisation is shut down, then what happens to the [many] Autistics they support?”
And there is a gulf between self-advocates and mainstream autism organisations, often formed and led by parents.
“I haven't had a positive interaction with any of them,” says Ashley Waite, a Melbourne Greens candidate who was diagnosed Autistic in her 20s.
“It's a ridiculous notion that we're doing something evil to these children."
AAA's CEO Nicole Rogerson, who calls AAA a “parent group”, admires the move to self-advocacy. She worries, though, that neurodiversity might obscure “very real challenges”.
Some Autistic people can't speak for themselves and need others to advocate on their behalf, she says. Others need skills to reach their best potential.
“It's a ridiculous notion [that] we're doing something evil to these children,” she adds. “We love them to death.”
She has been criticised for not condemning the mother of the Blacktown teenager chained to his bed. But she stresses, “It's never OK to abuse a child. Ever.”
“Of course, I'm a mum, and I'm going to look at it through a mum's perspective. We need to support the family. That boy only has his mum. Demonising her online is not okay.”
ASAN's Annear recognises there is often a lack of services, but says, “If you feel you can't parent your child for whatever reason, we do live in a society where you can relinquish them. You don't have to abuse and neglect them.”
There are common goals. Annear shares Rogerson's concern that not all people on the spectrum are thriving. Much has been written of how some Autistics can flourish in professions such as engineering and IT. Annear worries about the person with an IQ of 160 and no independent living skills, who pees in a jar because they can't face leaving their room.
Tony Langdon agrees many Autistics need help with challenges which can also include communication, sensory issues, self care and mental health.
“I'm not against treatment,” he says, “but treatments should be to improve the person's quality of life, not to make them look 'normal' to society.”
In Neurotribes, Silberman wrote of young Autistic twin boys being given electric shocks in a California-based experiment in 1965 if they didn't obey the researcher. Cattle prods were widely used that decade, in an attempt to stop a child's Autistic mannerisms, such as rocking backwards and forwards.
Dawn-joy Leong talks about her "different way of thinking"
Leong questions a behavioural modification technique called Applied Behaviour Analysis (ABA), which aims to teach Autistic children common social interactions such as looking someone in the eye. She says ABA wants to draw the neurodiverse into a neurotypical world. Looking into someone's eyes can make her afraid because she doesn't know why she's doing it.
She says, “I agree that children need to learn basic manners, and if your Autistic child is violent because of an unknown reason, it has to be addressed … [but] is it to suit your social norms, or do you want your child to suffer less?”
The push for more Autistic representation has been realised at the Brisbane-based Autism Co-operative Research Centre (CRC), a world-first national co-operative body which brings together dozens of different organisations to study diagnosis, education and adult life. Each of their 43 projects has an Autistic person involved.
CRC head Judy Brewer, who has a 22-year-old Autistic son, says she was determined from the start to involve Autistic people. It took years for them to find a suitable board member.
“We didn't want a token person,” she says, speaking in a personal capacity. “We wanted someone with a skills base we need.”
“There's you and there's me, but let's develop a new concept of us.”
ASAN-AUNZ can trace its roots to the days before Facebook, when people communicated via internet relay channels (IRC) and Yahoo groups. Three of its current board, including Annear and Langdon, first met on the #a4 IRC channel.
Now social media plays a big role in activism – criticising news stories for an inappropriate focus, for example. The Twitter hashtag #actuallyautistic is popular. Ashley Waite also promotes neurodiversity via politics. “I think it's necessary. A bunch of people yelling about it on social media is never going to be enough on its own.”
The politics of neurodiversity reminds her of where the queer rights movement was 20 years ago.
Waite says how political parties approach neurodiversity – wrong most of the time – reminds her of where the queer rights movement was at 20 years ago. “it's very similar in terms of public perception and legal rights.”
Similarly, many parents used to want their gay children 'cured', she notes. “They used justifications like 'they'll never be able to have a family', 'they'll never have a quote normal unquote relationship'. Ostensibly, what parents wanted was for the good of their children.
“The same thing is happening now – a large number of parents of Autistic children want them cured because it'd be 'better' for the child, but very, very few Autistic people agree with that.”
The word “cure” is a four-letter flag for many Autistic people, who see it as a negation of their existence. Annear says decades spent trying to find one “fundamentally says to Autistic people there's something wrong with you”. Any number of causes have been suggested over the years, including being born in summer, diabetes during pregnancy, older fathers, low birthweight, high birthweight, being a second born, being a later born, living near a motorway, 'cold' parenting by mothers and, notoriously, vaccines.
Parents go to extreme lengths for a cure. Some make their children drink a bleach solution called Miracle Mineral Solution, in the belief it will kill worms which 'cause' the condition. Diet and energy medicine form part of an “integrative healthcare solution” promoted online. Stem cell trials have been conducted. There's even an Ayurveda treatment, based on traditional Indian medicine.
Judy Brewer defends Autism CRC's funding of genetic research, saying results should only be used to understand and help Autistic people. “Those who want to do this for a cure should not be supported,” she says. “Neurodiversity adds to every aspect of society. I'm not looking for a cure and I'm a parent. I love my son 100 per cent.”
Some Autistics, though, want a cure. One of the most prominent is Jonathan Mitchell, who runs Autism's Gadfly blog. The 60-year-old American thinks the lack of pro-cure voices is because the people who want curing are more severely afflicted and find it harder to communicate.
“Autism would be like a blue screen for Windows,” he says.
Mitchell's autism has affected his whole life, stopping him from having a full relationship and hindering his ability to earn a living. He has bad fine-motor skills, and struggles to write and do chores.
“Neurodiversity provides simplistic solutions to hard problems,” he says, by phone from Florida. The analogy of Autistics having a different computer operating system “trivialises” a “bad disability”. He says, “Autism would be like a blue screen for Windows.”
“I've been called a self-hater,” he adds. “I don't hate myself, I just wish there was a cure so I could function better – and others like me who are younger would have a chance for a better life.”
A now-defunct website of the same name told of a forgotten civilisation called 'Aspergia'. Its inhabitants thrived in a social structure unlike that which dominates today. They were born with a specific talent and enjoyed solitude to pursue their passions, with periods of uncomplicated company. The ocean rose and reclaimed Aspergia, leading to a diaspora and integration with people whose customs were alien to them.
“In many ways, while we try to assimilate into society, we live in an entirely different world and as a result many have begun to see themselves as the Autistic Peoples,” says Elinor Broadbent, a moderator on two Facebook autism groups.
“That does not make us superior or inferior to anyone else, it just means that we connect on a level of understanding that very few on the outside can grasp”.
At the far end of Autistic pride sit the “Aspie supremacists”, says Annear – usually “white and male”, believers in Asperger's syndrome as another stage of evolution, which gifts them a superior brain. She does not share this view, which she finds divisive.
“They dream of islands full of people with Asperger's.” She pauses and chuckles. “Which would probably be an unmitigated disaster.”
Elinor Broadbent knows of a “very small group” that's even looking into buying land and setting up its own state.
“They have a vision of creating an environment where they would be 100 per cent in control of their social structure,” she says. Fitting into a society which makes no compromises is too difficult for them.
The flip side of separatism is a concept called 'neurocosmopolitanism' – a way of trying to understand different perspectives, just as multiculturalism tries to understand different cultures.
Leong wonders whether this could be lead to engagement between the neurodiverse and the neurotypicals.
“There's you and there's me,” she says. “But let's develop a new concept of us.”