With a seven-fold rise in diagnoses of autism in the past 20 years in the UK, studies showing one in 36 children could be on the spectrum and waiting lists for help and support at record highs, awareness of neurodiversity has never been so high.
Now, key voices are arguing that some autistic people could no longer be considered as having a disability at all. Instead, their autism could be regarded as part of their personality.
Judy Singer, known as the “mother of neurodiversity”, said: “The definition of what constitutes ‘autism’ is fiercely contested and by no means settled. The definition is so confusingly multilayered that it suggests that ‘autism’ is not a unitary condition at all.”
“Some people who have received what is essentially a confusing medical diagnosis of autism consider themselves as being ‘different’, while some prefer to identify as disabled,” she added.
She said society had long moved on from the days when the medical profession “owned” disability labels.
For some people, Singer said, the medical label of autism could be “atomistic and dehumanising”, because it looked at “everything that’s wrong with an individual and not what is wrong with a society that has tunnel vision about the visible Other and creates all sorts of obstacles in their path”.
She compared the issue to the consciousness-raising efforts of the black American civil rights movement, the women’s movement, the gay movement and the disability rights movement.
The Australian sociologist also said “neurodiversity”, the term she coined in the late 1990s to describe “the virtually infinite neuro-cognitive variability within Earth’s human population”, had become widely misunderstood and misused.
Prof Sir Baron-Cohen, the director of the Autism Research Centre at Cambridge University, said: “We should see autism through the lenses of both the medical model and the social model of disability. Some differences of autism are strengths and talents … such as excellent attention to and memory for detail, and excellent pattern recognition skills and a preference for depth over breadth.”
According to a 2021 study in the Journal of Child Psychology and Psychiatry, there has been a 700% rise in autism diagnoses in the past 20 years, and this year a release from the Centers for Disease Control and Prevention in the US estimated one in 36 children aged eight years old are autistic: a vast increase on the one in 100 figure that had previously been thought to be the case.
As diagnoses have increased, researchers have found that just one in four of those with the condition have a learning disability, a significant decrease. Until recently, it was thought that as many as three in four autistic people had an intellectual disability.
The dramatic rise in diagnoses is partly due to the definition of autism widening in the past 20 years to include the ways in which women and girls present.
The increase is also, however, due to the vocal work of charities and the increase in media coverage, combined with changes in policy. This has reduced the stigma of the condition and led to the creation of more assessment services, with demand for diagnoses and support rising to such an extent that it has outstripped the capacity to carry out assessments or offer support in many of these clinical practices.
Despite the prevalence of the condition and the changing nature of its presentation, autism is often still seen as a purely medical condition.
Singer believes this is why her famous term has become increasingly misused. “It is being used to mean ‘neurodisability’ when my idea was precisely to avoid dividing humanity into ‘us’ and ‘them’,” she said. “Neurodiversity simply refers to the limitless variability of human minds.”
Singer said her intention had been for “neurodiversity” to be used for advocacy purposes. “I wanted to suggest a banner term for a human rights movement for neurological minorities,” she said. “I wanted to augment the ‘disability’ category, which in the 90s was inadequately limited to physical and intellectual with ‘mental illness’ as the grab-bag for everything else.”
Steve Silberman, whose influential book Neurotribes discusses autism rights and the neurodiversity movements, agreed that autism was both a disability and a difference. But, he said: “I don’t believe it’s helpful to sort groups of autistic people into those for whom the medical model is appropriate and those for whom the social model of disability is appropriate.”
He is particularly cautious about “adopting labels like ‘profound autism’ to segregate non-speaking autistic people from allegedly ‘high-functioning’ autistics”.
He said: “Firstly, people with autism in all its guises require adaptation and change to mainstream society to fit in. Secondly, autistic people without learning difficulties can still need a lot of help with the significant challenges they face in their lives, and we don’t want to cut them off from being able to access that help.
“Thirdly, even autistic people who can’t speak should have the dignity to be able to determine the course of their own lives as much as they’re able to. If they’re trapped inside a medical model of disability, then they risk losing that dignity.”
Silberman is particularly concerned by the high rate of suicide among autistic people who do not have an intellectual disability: nine times higher than the general population. This, he said, was largely due to society not acknowledging and accommodating their social and emotional needs.
“Autistic people who don’t have learning disabilities are very sensitive to their social exclusion,” he said. “If we were able to create better environments for them, fewer would commit suicide.”
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August 01, 2023 at 01:09AM
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Autism could be seen as part of personality for some diagnosed, experts say - The Guardian
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