Making autism ‘normal’ won’t help my son. It may reduce the stigma but it trivialises the learning difficulties and isolation sufferers endureMichael Fitzpatrick
In the 15 years since autism was diagnosed in our son James, the public status of the condition has changed dramatically. In the early 1990s autism was still regarded as a rare and obscure disorder, associated with “mental handicap” or “retardation” and life-long institutional care. Today autism seems to be everywhere. It has become a common, even fashionable condition, linked to talent and creativity or simply making people interestingly different. But the fact that everybody now talks about autism does not make life any easier for people affected by it.
The higher profile of autism cannot be attributed to scientific advances. Though there have been impressive developments in our understanding of the genetics and psychological features of autism, neuroscience has yet to make much headway in elucidating the mediating links — or in suggesting therapeutic interventions. The increased awareness and wider diagnosis of autism appear to be largely the result of a cultural trend towards redefining human differences in terms of disorder. The question we now face, as James embarks on the transition to adult life, is: have things really improved for people with autism?
There can be no doubt that in many ways we have made progress. Parents are no longer blamed for making their children autistic through their frigid personalities, as they were as result of influential psychodynamic theories in the postwar decades. Behavioural and educational programmes have been developed for children at home and at school, though access to these remains uneven. And though there is much talk of provision for adults, including help with housing and employment, the reality remains one of a constant struggle for services.
On the other hand, the apparent upsurge in the prevalence of autism has provoked the notion of an autism “epidemic”, fostering fears and anxieties that provide a fertile terrain for irrational theories. These include the idea that autism is the result of demonic possession (as popularised in the book and film Horse Boy) or, in a modernised version of the same atavistic prejudice, that it is caused by vaccines or some unknown environmental toxin. The depiction of people with autism as “dead souls” or “metabolic train wrecks” — both familiar themes of the “unorthodox biomedical” movement — is disparaging and dehumanising. Rogue scientists and unorthodox practitioners, together with credulous journalists and celebrity parents, have all helped to promote these theories and the associated therapies, which they claim can produce miracle cures and “recovery” from autism. Desperate parents have become customers in a multimillion-dollar global enterprise.
The cultural fascination with autism is reflected in the plethora of films, novels and soaps featuring autistic characters. Yet, with some notable exceptions, such as Mark Haddon’s The Curious Incident of the Dog in the Night-Time or the Australian film The Black Balloon, popular depictions of autism tend to be voyeuristic or sentimental. Autism seems to offer endless scope as a metaphor for the discussion of contemporary anxieties about masculinity, fatherhood, the family. Reflecting on the “outlandish, offensive” misrepresentations of autism in film, writer Stuart Murray (also the parent of an autistic child) concludes that “overall, it is debatable how much progress has been made in cinematic depictions of autism since the foundational success of Rain Man”.
The concept of the autistic spectrum, including people with Asperger’s syndrome and “high-functioning” autism as well as those with “classic” autism, who usually have severe learning difficulties and more profound social and behavioural problems, has helped to reduce the marginalisation of people with autism. But the tendency to label as autistic every computer geek and eccentric scientist, and every obsessive train-spotter and stamp-collector (compounded by the vogue for identifying historical figures and even contemporary celebrities as autistic) carries the danger that the spectrum becomes stretched so wide that autism loses its distinctiveness.
“Normalising” autism may reduce stigma, but at the risk of trivialising the problems of those with more severe learning difficulties and also of underestimating the extreme aloneness that results from the social impairment of autism, even in higher-functioning individuals.
When James was found to be autistic, as a GP I knew virtually nothing about it. Recently a woman at the supermarket checkout, noticing his odd behaviour, asked if he had Tourette’s syndrome (familiar from Shameless and Big Brother). Yet, though everybody now knows the labels, the prospect of continuing high unemployment and public spending cuts mean an uncertain future for people with autism. The National Autistic Society has sponsored a campaign to increase awareness of adults with autism — but it remains unclear whether resources will be provided to meet the needs that are identified. The “autism angle” may provide publicity for the new Sherlock Holmes film or for the sequel to The Phantom of the Opera, but for families like ours the struggle is set to continue.
http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article6870232.ece
Michael Fitzpatrick is a London GP. He is speaking at the Battle of Ideas satellite debate, Age of Autism: Rethinking “Normal”, at Foyles Charing Cross Road, London
