By Jo Case·
Asperger’s Syndrome: Illness or Identity?
By Jo Case
Articles and commentaries on Asperger’s Syndrome are rife with references to the ‘condition’, ‘sufferers’ and ‘disability’. But many people who live with an Asperger’s diagnosis – for themselves or their families – experience it as a difference.
Jo Case is the author of Boomer and Me: A memoir of motherhood and Asperger’s. Drawing on a blend of personal experience and research, she explores the questions of illness versus identity, and disability versus difference - and what it means to have your personality labelled with a medical diagnosis.
On the weekend that my book was released, it was extracted in the Good Weekend.
Next to my reflections of my son’s diagnosis with Asperger’s Syndrome – and my realisation that it runs in my family – ran an article called ‘Syndrome of our Times’.
It was about how Asperger’s Syndrome is the latest trendy diagnosis, one that people falsely adopt to make themselves feel special or to excuse their faults. It cocked a cynical eye at the linking of high profile achievers to Asperger’s, and sneered at the ‘strangeness’ of the idea that ‘having a lifelong neurological disorder is a positive’.
‘Claiming that people such as Bill Gates or Steven Spielberg have Asperger’s is not really that helpful … since most Aspies will never direct an Oscar-winning movie nor remake the world of personal computing,’ wrote the author. ‘Many … are flat out trying to get to school on time.’
I felt sick about my family’s very personal story running alongside this glib dismissal of an idea – Asperger’s Syndrome – I’d spent the last seven years coming to terms with. And yes, embracing as a positive identity, for my son, and then myself.
But I also felt like it was better to have my story there than not. Because I knew that other Asperger’s families would react to the story as I did – with a kind of weary dread, a perverse shame at being portrayed as defective, possibly delusional. Yet again.
‘Labelled with this thing’
When my son was first diagnosed with Asperger’s Syndrome, six years ago, I didn’t really know what it was. He was in Year Two, and was having trouble fitting in at school. I went to the school counsellor to talk about how to help him. She asked me some questions and suggested she test him for being gifted. I am now ashamed to say that I was excited at the thought.
I rushed to answer the phone call that would deliver the results of the test – but instead of being gifted, Leo presented a very particular balance of strengths and weaknesses (advanced memory and language skills, delayed social skills) that placed him on the autistic spectrum.
‘We think he has Asperger’s Syndrome,’ said the counsellor.
And those words changed my world forever. I plunged into a kind of grief that was sparked by a sense of loss – a readjustment of my hopes for his future, now that he was labelled with this thing.
A brief history of Asperger’s Syndrome - and the DSM
In 1944, Hans Asperger published his clinical observations on four boys who had been referred to him for educational problems. They had normal to high intelligence and language development, but significant deficits in social and communication skills. He dubbed them ‘little professors’ and predicted they would be capable of exceptional achievement and original thought later in life.
His work was first published in English in 1979 – and Asperger’s syndrome was popularised as a term in 1981, in a publication by UK psychiatrist Lorna Wing. The first book on Asperger’s Syndrome was published ten years later. It was added to the American psychiatric manual, the DSM-4, in 1993.
In the new edition of the DSM, released this month, Asperger’s has been removed as a category. It is now classified as high-functioning autism, under slightly tweaked diagnostic criteria.
It is believed that up to 30% of people with an Asperger’s diagnosis would not be diagnosed on the autistic spectrum under the new criteria.
Some, including the author of DSM-4, Dr Allen Frances, believe that this proves Asperger’s has been wildly overdiagnosed, as the ‘trendy’ condition of the moment. That medical diagnoses are creeping too close to the border of ‘normal’.
Others believe that the change will lead to many children missing out on services that would help them adapt to a typical social – and school – environment.
That the reason autism diagnoses ballooned with the introduction of Asperger’s Syndrome to DSM-4 was that many people found an answer to a personal puzzle: one that provided a road-map for dealing with their challenges and making the most of their strengths.
Tony Attwood: ‘Different, not defective’
Tony Attwood is widely recognised as the world expert on Asperger’s Syndrome. His book, The Complete Guide to Asperger’s Syndrome, is pretty much the bible.
His approach recognises the challenges, but also firmly accentuates the positives.
‘From my clinical experience I consider that children and adults with Asperger’s Syndrome have a different, not defective, way of thinking,’ he says.
High-achieving role models
Reading that people like Bill Gates and Steven Spielberg might be Asperger’s was hugely helpful, when it came time to tell my son about his diagnosis.
I told him:
‘It’s just the way your mind works. There’s nothing wrong with it.’
He was dubious.
But Einstein in particular gave him comfort.
‘He was the smartest man who ever lived,’ he said.
Staking a claim to these kinds of high-achieving role models doesn’t mean that we delude ourselves that an Asperger’s diagnosis equals genius.
What it signals is that the label does not close off possibilities for achievement and happiness.
What it signals to the person diagnosed is that a label doesn’t mean that they’re less than other people. That different can be a positive thing.
That’s helpful, I think.
‘Autism is a way of being’: The neurodiversity movement
Asperger’s Syndrome is not an illness or a disease. A disease is something you can catch. Asperger’s Syndrome – like all forms of autism – is a collection of behaviours. A way of being.
Jim Sinclair is an autistic adult and co-founder of Autism Network International.
‘Autism isn’t something a person has, or a shell that a person is trapped inside,’ he says. ‘There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colours every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person – and if it were possible, the person you’d have left would not be the same person you started with.’
Jim is one of many autistic people – and their families – who are part of the neurodiversity movement, which pushes for autistic people to be accepted on their own terms. This is often in direct opposition to some of the leading autism activist groups, like Autism Speaks and Defeat Autism Now, run by parents of low-functioning autistic children.
And this is where the autistic spectrum gets messy – the needs and circumstances of those with Asperger’s Syndrome and high-functioning autism (now officially the same thing) are markedly different from those at the low-functioning end, with severely impaired communication skills.
‘It would be nice if you could prevent the most severe forms of nonverbal autism,’ says Temple Grandin, one of the world’s most famous autistic people. ‘But if you got rid of all the autism genetics, you’d get rid of scientists, musicians, mathematicians, and all you’d have left is dried-up bureaucrats.’
A professor of animal science at Colorado State University, Grandin’s unique way of seeing the world – and her affinity with animals – has helped to revolutionise the way livestock are handled, so that the fear and pain they experience are decreased or eliminated. In 2010, she was labelled one of Time magazine’s 100 Most Influential People.
She says: ‘I see a picture in my mind of the cavemen talking around the campfire, and off in the corner, there’s the Aspie guy, and he’s chipping the first stone spear, figuring out how to tie it to a stick, cutting some animal sinews to do it. Social people don’t make technology.’
Grandin has recently said that half the employees at Silicon Valley would be diagnosed with Asperger’s if they allowed themselves to be diagnosed, which they ‘avoid like the proverbial plague’. She’s speaking from experience, having toured the offices there, and says that many of the hits on her autism focused website come from areas with a high concentration of tech industries.
In 2001, Wired magazine reported on a surge of autism diagnoses in the preceding decade in Silicon Valley, with IT co-workers frequently running into each other in the waiting rooms of clinics where their children are diagnosed with autism. In January 2000, Microsoft became the first major US corporation to offer its employees insurance benefits to cover the cost of behavioural training for their autistic children.
It’s not just science and technology where autistic people can excel, though –their ability to focus on specific tasks for long periods of time, and to see the world in unique ways, translates to many fields, including the arts.
Hans Asperger himself said ‘It seems that for success in science or art, a dash of autism is essential.’
‘A disability and a difference: Simon Baron-Cohen’
‘Autism is both a disability and a difference,’ says Simon Baron Cohen, one of the world’s leading autism researchers. ‘We need to find ways of alleviating the disability while respecting and valuing the difference.’
In 2000, Baron Cohen outlined his detailed argument for the idea that Asperger’s and high-functioning autism are not so much a disability located within the person, but a mismatch between person and environment.
He says a basic way of dividing a person with Asperger’s or high-functioning autism from others is that they are ‘immersed in the world of things rather than people’.
It is possible to describe Asperger’s and high-functioning autism in value-free ways, he says.
‘For example, I do not spend any time thinking about mathematics problems, but I spend quite a lot of time thinking about people. In contrast, the person in the office next door spends a lot of time thinking about mathematics problems and hardly any time thinking about people. Yet I do not describe myself as having a disability with mathematics.’
He emphasises the unfairness of judging someone defective for what they do not do with an absurdist example: we don’t judge Michael Jordan as defective because he’s no good at needlepoint.
‘In a world where individuals are all expected to be social, people with high-functioning autism and Aspergers are seen as disabled – but if environmental expectations change, or in a different environment, they are not necessarily seen as disabled.’
For example, Wired describes the culture of Silicon Valley as having evolved to meet the needs of its autistic workers. ‘In the geek warrens of engineering and R&D, social graces are beside the point. You can be as off-the-wall as you want to be, but if your code is bulletproof, no one’s going to point out that you’ve been wearing the same shirt for two weeks.’
The one reason that Baron-Cohen believes that retaining the disability model is useful and necessary is that of access to government funds and support for therapies and intervention.
‘Special funding does not flow because one regards the child as ‘different’,’ he concluded.
‘It may be the legal system that needs revision.’
‘Many conditions are both illness and identity’
The tussle between embracing a way of being as a positive identity with its own culture, versus seeing it as an illness in need of a cure, or a disability to be overcome, is not unique to autism.
Andrew Solomon, in his remarkable book Far From the Tree, looks at ten different kinds of families where parents have a different identity from their children – and along the way, he explores the positives, negatives and contradictions within those identities. One of them is autism; others include Deaf culture, prodigies and Down Syndrome.
‘We often use illness when we want to disparage a way of being, and identity to validate that same way of being. This is a false dichotomy, says Solomon. ‘Many conditions are both illness and identity, but we can only see one when we obscure the other.’
For example, many of the musical prodigies he interviewed met the clinical criteria for the autistic spectrum, but were defined by their gift, not their challenges. A teacher at Julliard told him: ‘Many gifted kids have ADD or OCD or Aspergers.’
Temple Grandin believes it’s important for autistic people to be defined by what they do, not by their autism. First and foremost, she sees herself as a livestock specialist. ‘Autism is certainly part of who I am, but I won’t allow it to define me.’
Andrew Solomon discovered a rich Deaf culture and community, united by sign language. They are at ease with each other, but disadvantaged in the wider world. Other deaf people speak and lip-read rather than use sign language – or, increasingly, have cochlear implants, which simulate sound. They integrate more fully into the wider world, but must consciously process language as they use it.
‘Basically, with aids you’re constantly translating every line of language into itself. Like the high school sophomore at the college bar with a great fake ID, I could fool everyone into believing I was who I pretended to be,’ said one young man who had turned off his cochlear implant.
This constant translation is similar to what goes on for people with Asperger’s and autism, who also consciously process social interaction. And the debates over whether to educate children in their own communities, catered especially for them, or with the mainstream community, is also mirrored in Deaf culture.
The basic question: is it better to fit perfectly into your own community of others like you, with impaired ability to interact with the outside world, or to integrate with the wider community as best as you can, but always feel like an outsider?
Different individuals seem to answer that question in different ways.
ASD kids and the school system
There’s a saying that if you’ve met one person on the autistic spectrum … you’ve met one person on the autistic spectrum.
I’m a member of a local support group for parents of ASD kids. We’ve all approached the problem of how to integrate our atypical children into a school system designed for the typical child in different ways.
Emma opted out of the mainstream system and sent her son to a specialist school, Western Autistic, after starting him at a local school in Prep. He was so anxious that he would be vomiting on the way to school. ‘Our psychologist and the paediatrician at the time said, there’s nothing wrong with him, he’s just in the wrong environment,’ she says.
‘He’s normal there, he’s like everyone. He’s so resilient at the moment, because he’s the highest-functioning kid in the lowest-functioning pool of kids.’
Other parents in our group split the difference, with their children dividing their time between the welcoming environment of Western Autistic and the more challenging mainstream system, where many of us have had to battle to have our child’s needs appropriately met.
Most diagnoses of Asperger’s sparked by entry into education
A 2002 study suggests that most diagnoses of Asperger’s Syndrome are sparked by entry into an educational setting – either school or pre-school.
Perhaps the problem is a misfit between the typical school environment and the Asperger’s child, rather than a problem with the child themselves?
The study’s authors are concerned about the implications of labelling a child who would once have been viewed as eccentric, and sometimes naughty, with a pathology, with therapies and normalising interventions attached.
‘We have very little knowledge of the personal understandings of the very children we are categorising or the social repercussions of being labelled for these children.’
‘An integral part of their childhood will be learning that they are perceived as having a personal pathology or disability.’
How does this affect their quality of life? Their view of themselves?
‘They are different, they don’t want to be different’
I believe the answer is complex.
Oscar is in the process of transitioning to his local primary school this year, in Grade Two. It’s a move he asked to make. ‘He said to me, I’ve done enough autistic learning. You’ve got to get me out of this place,’ says Emma.
‘He’s very acutely aware of being different. He wants to have the same cap as everyone, the same t-shirt, to look the same. He does not want to be different at all.’
All the mothers in my group report this about their kids: they are different, they don’t want to be different. They certainly don’t want to be disabled.
Lena says her Asperger’s son Tom was pronounced clinically depressed at the age of seven. He was plagued by bullies at his primary school, and his acting out had him labelled a naughty child by school authorities. Once Lena had a diagnosis – and funding – for Tom, the school’s attitude changed, and things improved, though the student bullying continued. After they moved schools, where Tom was able to escape the stigma of being ‘the naughty kid’, things improved again.
Tom knew about his Asperger’s diagnosis and saw it as a positive thing – like me, Lena framed it as a difference, as something to be proud of. So he was open about it – until just before he started high school, one of his friends informed him that it’s a disability. ‘I don’t want to be a kid with a disability any more,’ he told Lena.
‘He understood very well the ramifications of being diagnosed,’ she says.
Still, when Lena coached Tom on how to blend in at his new high school, he became annoyed. ‘What’s the point of my individuality?’ he asked her. She told him that the more he fit in, the less he’d be picked on. One and a half years into a mainstream high school with a high population of ‘nerds’, Tom is happy.
‘The difference is night and day,’ says Lena.
My son doesn’t want to stand out either. He wants to fit in. But like Tom, he values his individuality. He reports happily that his friends are ‘nerds’ – gamer nerds, You Tube nerds, film nerds. Stuck with a group of kids he didn’t fit in with recently, he told me that they were ‘a bunch of neurotypicals’ – that’s Aspie speak for the rest of the population.
From what I can gather, these kids are both uncomfortable with the label that flags their difference to the outside world, and comforted by knowing there are others like them. They are desperate to blend in, but also reluctant to be anyone other than themselves. (Thank god.)
Diagnosis: A pathway to understanding
‘A lot of parents think they don’t want to be tainted by the association with Aspergers,’ says Lena. ‘I see the results, between the people who do nothing and the people who do something. By the time their kids are 13, 14, it’s very obvious.’
‘I would never have had any hope of Tom going to a high school with a thousand kids and wearing a uniform and doing very high demand schoolwork – he’s been on stage, he’s been playing the violin. Things I would have had no hope of him doing. It was all the psychologists talking to him, all the driving I’ve done, all the social stories, all the work that we do.’
A diagnosis of Asperger’s, or autism, provides a pathway to understanding – for parents, teachers and the person diagnosed. It explains how to address challenges, and signposts approaches that will and won’t work.
It enables the person – and their needs – to be understood.
‘The perfect autistic solution’
Asperger’s Syndrome, like any personality (and that’s essentially what it is – a distinctive personality type) has both positives and negatives.
It presents some very real challenges to be overcome: like mastering social skills, communication, emotional management, sensory issues and anxiety.
And while the idea that autistic people don’t have empathy is a myth, people with Asperger’s do have different triggers for empathy, which can be difficult.
But at the same time, Asperger’s offers a profile of strengths: a focus that can be harnessed for excellence, an affinity for detail and acquiring knowledge, a strong sense of social justice, and often a distinctive sense of humour.
As an Aspie, I believe self-knowledge is powerful – it enables choice.
Temple Grandin has recently suggested that we move away from trying to find the right all-encompassing labels for Asperger’s, or high-functioning autism.
Instead, we should focus our energies on treating the individual symptoms that do present as disabilities – and, equally importantly, on nurturing and developing those that present as strengths.
So: work with the details, and let the big picture form itself.
The perfect autistic solution.
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