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We have put autism on TV but can’t accept it in real life We have put autism on TV but can’t accept it in real life
(4 months later)
Not that long ago, autism seemed to be a subject largely confined to the fringes of the media; now, all of a sudden, it seems to be absolutely everywhere. On BBC1 there is The A Word, a kind of high-end soap opera built around the travails of a family trying to help their autistic son. Last week’s issue of the Economist had autism as its cover story, with the headline “Beautiful minds, wasted”.Not that long ago, autism seemed to be a subject largely confined to the fringes of the media; now, all of a sudden, it seems to be absolutely everywhere. On BBC1 there is The A Word, a kind of high-end soap opera built around the travails of a family trying to help their autistic son. Last week’s issue of the Economist had autism as its cover story, with the headline “Beautiful minds, wasted”.
In bookshops there are still prominent displays devoted to the text that triggered some of the current upsurge of interest: Steve Silberman’s Neurotribes, the elegant history of the scientific and cultural understanding of autism that won last year’s Samuel Johnson prize for nonfiction. Meanwhile, the news wires buzz with autism stories – from sobering research about autistic people’s apparently low life expectancies, through wildly contrasting claims that they are less likely to develop life-threatening diseases (“Can AUTISM protect you from cancer?” is surely a Daily Mail classic) to serious concerns about the implications for lots of autistic people of continuing council cuts.In bookshops there are still prominent displays devoted to the text that triggered some of the current upsurge of interest: Steve Silberman’s Neurotribes, the elegant history of the scientific and cultural understanding of autism that won last year’s Samuel Johnson prize for nonfiction. Meanwhile, the news wires buzz with autism stories – from sobering research about autistic people’s apparently low life expectancies, through wildly contrasting claims that they are less likely to develop life-threatening diseases (“Can AUTISM protect you from cancer?” is surely a Daily Mail classic) to serious concerns about the implications for lots of autistic people of continuing council cuts.
Related: Autistic people are not tragedies. My life has value and joy | Sarah Kurchak
To add to the noise, next Thursday the House Of Commons will host a three-hour debate about autism, which has made it on to the order paper thanks to the Tory MP Cheryl Gillan. The occasion will be a belated recognition of World Autism Week (which ended on 8 April). The motion cites “a lack of understanding of the needs of autistic people and their families”, and calls on the government to “improve diagnosis waiting time” – a big issue that sits at the heart of the predicament of thousands of people who need official recognition of their condition to get any kind of support. It also calls for “a public awareness campaign so that people can make the changes that will help the UK become autism-friendly”.To add to the noise, next Thursday the House Of Commons will host a three-hour debate about autism, which has made it on to the order paper thanks to the Tory MP Cheryl Gillan. The occasion will be a belated recognition of World Autism Week (which ended on 8 April). The motion cites “a lack of understanding of the needs of autistic people and their families”, and calls on the government to “improve diagnosis waiting time” – a big issue that sits at the heart of the predicament of thousands of people who need official recognition of their condition to get any kind of support. It also calls for “a public awareness campaign so that people can make the changes that will help the UK become autism-friendly”.
On paper, this last bit might look rather vanilla. In fact, in its modest way, its goes to the core of some urgent issues around autism, and a very modern syndrome – whereby media noise and “awareness” often represent the reverse of understanding, not least on the part of some people with power and influence.On paper, this last bit might look rather vanilla. In fact, in its modest way, its goes to the core of some urgent issues around autism, and a very modern syndrome – whereby media noise and “awareness” often represent the reverse of understanding, not least on the part of some people with power and influence.
Last week for example, hidden behind its paywall and thereby shielded from much scrutiny, the Sunday Times ran a comment piece by its deputy editor, Sarah Baxter. The peg, to use journalese, was a spurt of controversy about the decision by Robert De Niro – since reversed – to include a documentary authored by the discredited gastroenterologist Andrew Wakefield at his Tribeca film festival, which had inevitably reawakened controversy about the supposed link between autism and the MMR vaccine, and Wakefield’s theories on the subject. Cue Baxter’s own recollection of her angst about the jab, which concluded with the claim that some parents were “being used by a quack and a fraud”.Last week for example, hidden behind its paywall and thereby shielded from much scrutiny, the Sunday Times ran a comment piece by its deputy editor, Sarah Baxter. The peg, to use journalese, was a spurt of controversy about the decision by Robert De Niro – since reversed – to include a documentary authored by the discredited gastroenterologist Andrew Wakefield at his Tribeca film festival, which had inevitably reawakened controversy about the supposed link between autism and the MMR vaccine, and Wakefield’s theories on the subject. Cue Baxter’s own recollection of her angst about the jab, which concluded with the claim that some parents were “being used by a quack and a fraud”.
This was fair enough – and, as the father of an autistic child who passed through MMR angst and then came out the other side, I agreed with just about every word. But there was also a diversion into why, across the industrialised world, the numbers of diagnosed autistic people have increased, and two sentences that caused me to spit out my toast. One reason for the rise, Baxter wrote, was that “there is no such thing as ‘mental retardation’ any more. Now it has a name, autism – which includes everything from obsessional behaviour to an inability to speak or carry out basic functions.”This was fair enough – and, as the father of an autistic child who passed through MMR angst and then came out the other side, I agreed with just about every word. But there was also a diversion into why, across the industrialised world, the numbers of diagnosed autistic people have increased, and two sentences that caused me to spit out my toast. One reason for the rise, Baxter wrote, was that “there is no such thing as ‘mental retardation’ any more. Now it has a name, autism – which includes everything from obsessional behaviour to an inability to speak or carry out basic functions.”
In support of her case, she cited the aforementioned story in the Economist. But it actually says something very different: that “some cases that used to be diagnosed as an ‘intellectual disability’ or … as ‘mental retardation’ are now being recognised as autism”. Here was a simple logical difference that obviously eluded Baxter – and, rather more seriously, also escapes lots of people who still reduce autism to a matter of bigoted cliche, as five minutes on Google will attest.In support of her case, she cited the aforementioned story in the Economist. But it actually says something very different: that “some cases that used to be diagnosed as an ‘intellectual disability’ or … as ‘mental retardation’ are now being recognised as autism”. Here was a simple logical difference that obviously eluded Baxter – and, rather more seriously, also escapes lots of people who still reduce autism to a matter of bigoted cliche, as five minutes on Google will attest.
Related: Movie stars have their uses: medical science isn’t one of them | Catherine Bennett
The key point isn’t that autism has become a catch-all term to denote what used to be called “retardation”, but something close to the opposite: that our increasingly nuanced understanding of autism means we now have a much better understanding of some people who would once have been understood as simply “retarded”. The same applies, moreover, to autistic people who have no learning disabilities at all.The key point isn’t that autism has become a catch-all term to denote what used to be called “retardation”, but something close to the opposite: that our increasingly nuanced understanding of autism means we now have a much better understanding of some people who would once have been understood as simply “retarded”. The same applies, moreover, to autistic people who have no learning disabilities at all.
Though it feels painful having to point out something so simple, autism specialists have known since the 1980s that it is a spectrum condition. That means that, while autism manifests itself in a number of core traits, the ways in which particular individuals are autistic will vary hugely – and as our understanding of this has improved, the numbers of diagnosed cases have increased. Is that really so complicated?Though it feels painful having to point out something so simple, autism specialists have known since the 1980s that it is a spectrum condition. That means that, while autism manifests itself in a number of core traits, the ways in which particular individuals are autistic will vary hugely – and as our understanding of this has improved, the numbers of diagnosed cases have increased. Is that really so complicated?
Other misapprehensions about autism still extend into the distance. The appearance of a programme such as The A Word is a step forward, but at the same time people still prefer to fixate on autism as something associated with childhood, and thereby avert their eyes from the issues surrounding autistic adults, not least when it comes to employment(as the Economist piece pointed out, the Israeli army now uses autistic volunteers to interpret complex satellite images – would that other employers had similar insights).Other misapprehensions about autism still extend into the distance. The appearance of a programme such as The A Word is a step forward, but at the same time people still prefer to fixate on autism as something associated with childhood, and thereby avert their eyes from the issues surrounding autistic adults, not least when it comes to employment(as the Economist piece pointed out, the Israeli army now uses autistic volunteers to interpret complex satellite images – would that other employers had similar insights).
Our culture still too often couches autism in terms of pity or fear as an essentially Victorian sensibility lingers on. But we are moving towards a new world in which autistic people and their families advocate for themselves. For them, the current noise about autism perhaps highlights a inevitable phase of any struggle against ignorance: the point at which you know you’ve come a long way but still have light years to go.Our culture still too often couches autism in terms of pity or fear as an essentially Victorian sensibility lingers on. But we are moving towards a new world in which autistic people and their families advocate for themselves. For them, the current noise about autism perhaps highlights a inevitable phase of any struggle against ignorance: the point at which you know you’ve come a long way but still have light years to go.