Interview: Adam Feinstein
A journalist whose research into autism was sparked by his son being diagnosed with it has published his findings
Family feeling: Adam Feinstein with his son Johnny, who was diagnosed with autism at the age of three-and-a-half
It was on an aeroplane that Adam Feinstein first heard that his son Johnny, the youngest of his three children, was autistic. In the way that it is often easier to open up to someone you have never met and will probably never see again, Feinstein found himself telling the man next to him about something that was giving him great cause for concern.
Johnny, then aged three, had inexplicably stopped speaking. He had also withdrawn from his friends in his play-group. "I am quite sure your son has autism," said the stranger. Six months later, Johnny was diagnosed with the disorder that can still today be a mystery to the practitioners whose job it is to diagnose and treat it.
"The thinking now is that there are lots of different kinds of autisms," says Feinstein, author of A History of Autism, Conversations With Pioneers.
Former journalist Feinstein has become an expert in the field. He edits Looking Up, a website and resource for people affected by autism, and also works for Autism Cymru, which has set up the world's first national autism strategy with the Welsh government.
His book is a forensic but fascinating account of the men and women, many of them Jewish, who forged a new understanding of a condition whose victims were previously dismissed or even imprisoned and punished for behaviour that was considered anti-social. It charts controversies and arguments, some of which still rage, and reveals how even the nature/nurture debate surrounding the disorder has been distorted by a fear that any talk of the significance of genes will sound like Nazi eugenics.
The giants in the field are the Austrian-Jewish Dr Leo Kanner and Dr Hans Asperger, the man whose name would be used to name the "high functioning" level of autism known as Asperger's Syndrome. Remarkably, they had little or no contact with each other, partly, Feinstein argues, because Asperger's research was tainted by his working in Nazi Austria.
Feinstein, fiercely defending Asperger's reputation, reveals that Asperger argued that children with the disorder have great potential and can be useful members of society. The problem was that he had to couch these arguments in Nazi language and terminology.
The debate on the causes of autism took a damaging turn with the publication of Bruno Bettelheim's theory that parents caused autism in their children.
"It was disastrous," says Feinstein. "He was a survivor of concentration camps. He leapt to the wrong conclusion that the behaviour of the children he saw in the camps was comparable to the behaviour he later saw as a Freudian psychoanalyst in America. There was absolutely no evidence for this, and his -- horrendous -- 1967 book The Empty Fortress said the parents were to blame."
Parents can still experience guilt. For Feinstein and his wife Kate, one of the most difficult decisions they had to make as Johnny's parents was to place their son in an autistic-specific boarding school.
"The dynamics of the family alter with a severely autistic son. Johnny is one of those who start to speak and then lose their language. It's called autistic regression. We have no idea why it happens, so he is now at a boarding school … A lot of people wrote to us saying we had sold out, that we betrayed our son."
It's a story that one day Feinstein will write in a different book. "I wanted to write a personal story after Johnny had been diagnosed but found it tricky to keep dispassionate. He is now 17. But this is a book I will write in the future."
'The History of Autism' is published by Wiley-Blackwell at £75 (pb: £29.99)