Roy Richard Grinker: ‘There’s never been a better time to be autistic’

The American social anthropologist Roy Richard Grinker, father of two teenagers – one autistic, one not – and author of Unstrange Minds: Remapping the World of Autism, is giving a lecture in London for World Autism Day next week. He spoke to Michael Fitzpatrick about his work.

One of the most controversial statements in Roy Richard Grinker’s award-winning 2007 book is that ‘it’s a better time than ever to be autistic’. Does he stand by it? ‘Yes I do’, he says emphatically. ‘The point I made in my book was that autism has become more familiar and visible than ever before, and that has made a dramatic difference in the way that people with autism are regarded and treated.’ For Grinker, stigma is still an important barrier to care for many children with autism – and not just in developing countries. He has been doing some work in Korean communities in New York, among whom educational achievement is highly valued and families with a child with learning difficulties experience a sense of shame. In these communities, ‘increased recognition of autism offers a lever for providing greater attention to children with intellectual disabilities’.

Grinker tells me that when he was asked to give a talk about his book in a small town in New England, he asked the audience why they had invited him. Were they particularly interested in his research into autism in other cultures (he has conducted comparative studies in Africa and East Asia)? Did they want to hear his perspective as a father? ‘No, they said that what they liked about my book was that I wasn’t angry.’ Grinker fully shares parental frustrations about the slow progress of scientific research into autism and concerns over the inadequacy of educational and other provisions. Yet he is also aware of the danger of the rage and rancour that permeate some parental campaigns, finding illusory targets for blame and recrimination and pursuing phantoms. In response to the atmosphere of panic, Grinker counsels that we need ‘to stop, step back and take a closer look at our fears’ about autism.

One of the central themes of Grinker’s book is its challenge to the conception that we are currently in the grip of an autism ‘epidemic’. Grinker argues that the ‘newer, higher, more accurate statistics on autism are a sign that we are finally seeing and appreciating a kind of human difference that we once turned away from’. He objects to the use of the term ‘epidemic’, which suggests contagion and ‘implies danger and incites fear’ and depicts people with autism as ‘frightening and tragic’.

Grinker has recently completed a major population study of the prevalence of autism in South Korea. Provisional results of this research, based on a survey of 38,500 children between the ages of seven and 12, with a high participation rate of 70 per cent and using rigorous clinical evaluations, suggest a prevalence of autism in this society at around the level of one per cent revealed by the more thorough studies carried out in recent years in Western countries.

‘These results are particularly significant’, says Grinker, ‘because there is little infrastructure of diagnostic services and educational provision in South Korea and most of these children had received no services’. He hopes that by showing that autism exists at a similar prevalence in different cultures this work can encourage the provision of better services for children and families. Grinker is well aware that there is a long way to go: ‘For the whole of Africa, South America, even the Indian subcontinent, there is scant reliable data on autism prevalence – and little in the way of specialist education.’

Meanwhile, back in the US, vaccine-autism controversies continue to rage long after they have faded in the UK. Why, I ask Grinker, have these theories proved so enduring? He tells a story from his anthropological field work among the pygmies of central Africa of how people sought a mystical explanation for the death of a respected elder as a way of honouring him and clinging to the belief that his death had not been in vain. ‘Parents need to believe that something happened to their child, that their autism was not simply a random event. Many want to see their children as victims of some malign process.’ Notions about vaccines and epidemics feed into parental anxieties, which are then amplified by the media and advocacy groups. Given the ascendancy of celebrity culture over scientific rationality, perhaps more in the US than in Europe, he is not optimistic about things improving in the near future.

What next for Grinker? ‘I am working on a new book about the influence of military conflict on the diversification of psychiatric conditions over the course of the past century’. With the provisional title ‘Ill at ease’, this is one to look out for.

Dr Michael Fitzpatrick is the author of MMR and Autism: What Parents Need to Know (buy this book from Amazon(UK)) and Defeating Autism: A Damaging Delusion (buy this book from Amazon(UK)).

Roy Richard Grinker will be delivering the inaugural Queensmill School Lecture on Monday 28 March at 7pm at King Edward Hall in the City of London.