Making sense of the common ‘disorder’ autism

The autistic brain is a beautiful mess. There are more synapses in this lump of grey matter than in an ordinary brain. It’s these connections between the brain’s neurons — which regulate signals — that orchestrate the overwhelming sensitivity to outside stimuli.

Noises are louder, smells are stronger, touch is more invasive, light is brighter. For the autistic person, there is a pervasive intensity to the experience of the world around them that makes living in it that much more difficult.

The way autism plugs into that world is equally difficult and, in Australia, authorities have grappled with how to define the condition, how to provide for it and where to draw the line.

The $22 billion National Disability Insurance Scheme is the largest and latest system to unpick this mystery, and for now it has few answers.

For the longest time autism didn’t have a name. People who felt under siege by the world were curious at best and mentally ill at worst. Children were institutionalised, parents were blamed for their progeny and remarkable minds ­already producing some of the best art, science and politics of a generation continued without classification.

The story of autism as a condition is a conspiracist’s fantasy. Co-discovered in the early 1940s by Nazi scientist Hans Asperger — a man whose morality has been questioned ever since — its definition was subject to expansion and revision over the decades until, in the 1990s, a fraudulent doctor with a stake in a rival product took advantage of its cloudy origin story and implicated vac­cines in its cause.

It has been characterised by mystery and intrigue. Autism’s other original discoverer, Leo Kanner, referred to the children in his first study — published in 1943 — as “refrigerator children”, noting that they seemed to “inhabit private worlds” and, later, that it was as if they were kept in a refrigerator that never defrosted.

Their parents were, at first, blamed for this icy detachment. Despite autism entering the lexicon early, it wasn’t for another two decades in both the US and Australia that it began to ­become widely noticed. Parents drove this turnaround. “Up until the late 1960s and early 70s, people in Australia didn’t ­really distinguish between autism and what we called mental retardation,” disability historian and University of Sydney PhD candidate Dave Earl says.

“Around the time of the Second World War there was an explosion in children being diagnosed as mentally retarded and groups of parents got together in different states to lobby for their children to be included in schools.”

The Sub-Normal Children’s Welfare Association began in NSW but as the autism discoveries made by Kanner and Asperger — a year apart — began to filter down, splinter groups sprang up. The first conference on autism was held in South Australia in 1967 and was opened by the then health minister Bert Shard.

“It has been said that generally autistic children are perfect physically and if we could only find the key to unlock them from their ­detached state we would uncover perfectly normal children,” he said.

This marked the period in which the diagnosis began peeking into Australian public life. On page nine of The Australian Women’s Weekly in 1967 a full-page report was headlined “Mother’s fight to help autistic children”, in which Perle Treweek spoke about her 11-year-old son Brian.

“When I was told Brian was ­autistic, I had no idea what the word meant,” Treweek told the magazine.

A letter to the same magazine’s “Dear Doctor” column in 1976 asked how to recognise an autistic child. “They are aloof and find difficulty in communicating with others ... the child is obsessive and may throw a rage when his obsessive traits are interfered with,” the magazine responds. “The illness may be mild, the child showing no more than eccentric behaviour in later life, or severe, in which case the child is incapable of social ­adaptation.” Hence the term ­autism spectrum disorder.

There is agreement these days that the number of people with ­autism in the population has been roughly the same in modern history but as awareness rose, so did diagnoses. They barely grew for decades until an unbridled spurt began in the early 90s — and the number has risen exponentially ever since.

This week, The New Yorker published a piece reviewing a new book, In a Different Key: The Story of Autism by John Donvan and Caren Zucker, which revisits the rise of autism. “The discovery of autism carried with it the insis­tence that it had always been there,” Steven Shapin writes. “Retrospective diagnosis is now something of a sub-specialty for both psychologists and historians, and the catalogue of famous figures who have been placed on the spectrum now includes Newton, Mozart, Beethoven, Jane Austen, Kant, Jefferson, Darwin, Lewis Carroll, Emily Dickinson and Wittgenstein.

“But the past was presumably populated with countless uncelebrated people who might have ­received a diagnosis ... Sometimes they were treated with hideous cruelty, and sometimes with surprising indulgence. Others lived their lives outside historical systems of medical diagnosis and management, and were probably just considered ‘eccentric’ — one of the accepted ways of being ­normally abnormal.”

Sydney parents Sarah and Jason Stanton have two children — Gracie, 5, and Carter, 2 — who are at the low and high needs ends of the autism spectrum respectively. Both hit their developmental milestones until 16 and 19 months before their language and behaviour began to disintegrate.

“The last one was 18 months and the nurse was extremely happy with how he was developing,” Sarah says. “Because I was paranoid ­because of Gracie I was watching every little detail and he just stopped developing. Unfortunately there is nothing you can do immediately. I would talk to him nonstop, I would play with him nonstop, but I couldn’t stop his brain from regressing.”

The family has paid tens of thousands of dollars for intensive early ­intervention therapies that have had time to begin working for Gracie, who is now using words again.

Carter will take time. His brain is “supercharged” and he absorbs stimuli with astonishing effici­ency. “He stimms (makes repetitive movements) a lot, he flaps his arms. He dances on the spot. He puts his hands in front of his eyes a lot,” Sarah says.

“He is supercharged almost 24/7. The biggest thing is he struggles to fall asleep. He ... the smallest thing, he is highly stimulated, he stays up very late, he even wakes up during the night and will be jumping on his bed laughing and probably thinking what he was doing that day.”

Centrelink data from June last year shows there are about 73,000 children aged up to 15 with autism or Asperger’s syndrome in Australia. There are about 230,000 people altogether — approximately 1 per cent of the population — but the truth of it is no one really knows because no one has bothered to ask.

The numbers have risen ­because awareness has grown, and so too have funding packages tied to medical definitions.

One of the first who campaigned for an expanding diagnosis was Lorna Wing, a British psychiatrist whose own child had autism.

“For Wing, Asperger’s was not a separate disorder; it occupied a point on the autism spectrum,” Shapin writes in The New Yorker.

“Her ambition was not purely theoretical: as an activist, her inten­tion was to enlarge the population of children receiving a diagnosis of autism, and thereby to secure support for the greatest possible number of people. (Some years ago, a child psychiatrist at the National Institutes of Health was quoted as saying, ‘I’ll call a kid a zebra if that will get him the services I think he needs.’)

“The expansion of diagnostic criteria inevitably made definitions of what autism was even more diffuse.”

As the numbers out in the open have grown, a new movement sprang forth to reclaim autism from the medical community and parents frustrated by the condition rather than accepting of it..

Leia Greenslade, a Brisbane academic, refers to herself as “neuro­divergent”, a term coined to describe people whose brains branch off and away from the standard model, or “neurotypicals”.

“I love the label autistic,” Greenslade says. “It feels like a beautiful word to describe me. I ­reject the word ASD (autism spectrum disorder) because the D means ‘disorder’ and I am not disordered.

“Like many autistic adults who are diagnosed or identify as autistic later in life, I came to understand that I was autistic after my three-year-old son’s diagnosis. I began to see the similarities ­between some of his behaviours and my own. I read everything I could about autism and it was crystal clear to me that I was autistic.”

Greenslade says there is no such thing as a typical autistic person. “Some of my senses are hyper strong. My sense of smell, for ­example, means that there are some foods I won’t eat and some places I won’t go because they make me feel instantly nauseous. I am very sensitive to light and prefer to be in darker places.

“I wear noise-cancelling headphones when I leave the house because I hear everything. I like to keep to a strict routine, eating the same foods, wearing the same clothes, doing the same activities.

“My brain is a ball of hyper-­focused wonderful. It devours infor­mation, works extremely fast and creates enormous amounts of output in short periods of time. This is hyper focus. It’s wonderful for my work as an academic but pretty challenging when you are walking around the streets and it needs to read every single piece of writing that comes into its peripheral vision.”

Neurodivergents like Greenslade reject parts of the “interventionist” approach taken in modern autism treatment, saying the condition itself is not something that ought to be cured or fixed.

The position sets them up in ­direct opposition to families that have been desperate to help their children adapt to a world that ­disables them.

These interventions are “ugly and harmful”, Greenslade says.

“I am in support of any assistance that helps autistic people to be their best autistic selves,” she says. “Unfortunately, much of the ‘therapy’ associated with the ‘20 hours of intensive early intervention therapy’ does not aim to support autistic people to be their best autistic selves. Instead, it ­focuses on training them to fit in and be ‘normal’.”

More than 45 years ago, Melbourne University professor Margot Prior stumbled on to autism research at the suggestion of a friend. She has never been able to let go.

“It is such a puzzle, it is a real challenge, and in those days we thought we could find out what it was and why it happened,” Prior says. “What we didn’t know was that it was such a recalcitrant problem. I thought we would be here by now, but we are not.

“There has never been, and I wonder if there ever will be, a single cause of autism. It seems to me to be some conglomeration of causes coming together.”

This Christmas just gone ­Gracie Stanton, after hundreds of hours of intensive therapy, went to have her picture taken with Santa. She did something that had taken her years to remaster. She squeezed his hand, looked at the camera and smiled.