Adam Feinstein: My Twin Voyages of Discoveries

I first met Adam Feinstein many years ago when he approached me during an autism conference. I don’t believe he had a question for me; rather, he was in a good mood and intent on socializing. I was surprised when he spoke to me in perfect Spanish, with an accent from Madrid and northern Spain (Castillian). From what I remember, he was an excellent listener who prefaced all of the answers to my questions with a big smile. It is easy to see how he became a successful news reporter. Sometime later Adam came to visit me in Kentucky as part of a world tour preparing his book. “A History of Autism: Conversations with the Pioneers”. During his time in Kentucky I became aware of his plans to bring scietific information about autism to the world stage. I was not surprised to see sometime later that he was the moving force for the first autism online congress (AWARES), for which I have been a participant every year since its inception. I can only stand in awe of all of his varied accomplishments. I hope this blog will enable the reader to get to know Adam at a more personal level.

ADAM FEINSTEIN

My book, A History of Autism: Conversations with the Pioneers, was published by Wiley Blackwell in 2010 and was greeted, I’m glad to say, with worldwide acclaim. It marked the culmination of a remarkable voyage of discovery, during which I had travelled around the world, talking to the very earliest professionals in the field – including Leo Kanner’s closest colleague, Professor Leon Eisenberg, in Harvard.

But my own personal journey began much earlier – back in 1996. I heard the word ‘autism’ for the first time that year. I was on a flight heading out of Heathrow for a conference on press freedom. (At the time, I was a foreign affairs journalist. I edited a magazine called the IPI Report, published by the International Press Institute, and I had interviewed leading political figures, including Nelson Mandela). Sitting beside me on the plane was a distinguished-looking man. I began to tell him how my son, Johnny, had stopped talking or playing with other children in the playgroup at the end of our road in London. ‘Johnny has autism’, the man assured me. I was sceptical – the man had never even met my son. What could he know, anyway? I took his business card without looking at it and played chess with one of his children for the rest of the flight. About six months later, a team at St George’s Hospital in London diagnosed Johnny as autistic. I rapidly read up everything I could find about autism and one day, I glanced at that business card still lying in my jacket pocket: the name on it was Dr Eric Fombonne, which I now recognised as belonging to one of the world’s leading autism experts. Whenever Eric and I meet, we joke that he was the first person to ‘diagnose’ my son!

Johnny, almost unbelievably, turns twenty-one in March of this year and is doing well in an excellent British autism-specific college. In the years since he was diagnosed, I have put much of my energy into trying to understand autism. In 1998, I launched a monthly international autism magazine, Looking Up (www.lookingupautism.org), and in 2001, I joined the pioneering Welsh national autism charity, Autism Cymru – founded by Dame Stephanie Shirley – as the editor of its two websites, AutismConnect and Awares. (Autism Cymru was instrumental in setting up the world’s first-ever national autism strategy in Wales, a model which has been picked up and imitated as far afield as New Zealand.)

Today, I run monthly one-day online autism conferences on the Awares Conference Site (www,awares.org/conferences) which have featured the biggest names in the field, including Lorna Wing, Simon Baron-Cohen, Uta Frith, Rita Jordan, Gary Mesibov, Donna Williams, Wendy Lawson, Darold Treffert , Theo Peeters, Hilde De Clercq, Stephen Shore, Olga Bogdashina, Connie Kasari and Carol Gray. In addition, every November, I run the week-long Awares international online autism conference (also at http://www.awares.org/conference). This is the largest such conference in the world, with more than sixty leading autism authorities and thousands of delegates taking part. Simon Baron-Cohen has called it ‘the finest event of its kind on the planet’.

Adam and Johny

Figure: Adam Feinstein and his son Johnny, the youngest of his three children.

My book on the history of autism came about as the result of the generosity of Steve Shirley (as most of us who know Dame Stephanie call her). She is a successful British businesswoman whose own autistic son, Giles, died at the age of 35. She wanted the book written and generously made it possible for me to travel around the globe, speaking to leading autism experts – and parents, who of course are also experts, as well as heroes! – not only in Europe and the United States, but also in China, India, Russia, Latin America and Australia.

This journey was exhilarating and stimulating – and continues to this day, four years after the book’s publication. I have made many good friends. I have acquired an immense admiration for the energy and enlightenment of autism campaigners across the globe. I was very fortunate to be able to spend time with Professor Eisenberg talking about his work alongside Leo Kanner, as well as with Kanner’s son, Albert, and Hans Asperger’s daughter, Dr Maria Asperger Felder. (Maria showed me documents in Zurich proving that Asperger was using the term ‘autistic psychopathy’ from the early-1930s – long before Kanner’s celebrated 1943 paper. And we now know that Asperger gave an important lecture using the same term in Vienna in 1938, pre-dating by six years his 1944 article which everyone continues to cite).

Other key figures I spent time with while researching my book included the remarkable Lorna Wing and Judith Gould (who invented the concept of the autistic spectrum and the Triad of Impairments in 1979 – and Lorna also coined the term ‘Asperger’s syndrome’ in 1981); Michael Rutter in London and Susan Folstein in Baltimore (both extraordinary researchers, of course, and also joint authors of the celebrated 1977 twin study); Uta Frith (who translated Asperger’s 1944 paper into English in 1991 but has done so much more for autism besides that); Gary Mesibov, the exceptional long-time director of Division TEACCH in succession to Eric Schopler; Theo Peeters and Hilde De Clercq, two of the most compassionate professionals working in autism, and Darold Treffert, the world’s top expert on autistic savants.

I will never forget meeting the world’s two pioneers in the neurology of autism, Dr Margaret Bauman and Dr Thomas Kemper, at my Boston hotel. The place which we had been assured was the quietest in the building turned out to be the noisiest spot in the whole of Massachusetts, with a hotel page announcing the shuttle bus to the airport every five minutes. Another memorable moment in that encounter came when I asked Margaret and Thomas whether they considered autism to be ‘brain damage’. These two researchers – who have worked together for quarter of a century – began to disagree as to how best to answer my question and continued their ‘dispute’ for the next ten minutes. That was one more piece of evidence demonstrating that twenty-five years in the field are not enough to resolve autism’s bewildering complexities!

Among the hugely influential parents I met were Ruth Sullivan in West Virginia (not only a founder of the Autism Society of America but the mother of Joe Sullivan, who was one of the models for Dustin Hoffman’s portrayal of Raymond Babbitt in the 1988 movie, Rain Man); Merry Barua in India, Tian Huiping in China, Isabel Bayonas in Spain and Sergey Morozov in Russia.

Today, I am very proud of the fact that I was able to talk to so many important figures and to incorporate their comments in my book, which is coming out in an Italian edition in February (with an updated section on DSM-5) and in Spanish later this year. But I am also extremely proud, of course, of my son, Johnny, who is making big strides and growing up, despite the obstacles which he undoubtedly faces every day. I give talks around the world, in English and in Spanish, about both the history of autism and my own personal history as the father of a young man with the condition. (My most recent presentation was in my home town of Cambridge – the British version, not the American one! – speaking at Simon Baron-Cohen’s Autism Research Centre.) I also write on autism for various publications, including the Guardian, the Times Literary Supplement and the New Statesman and broadcast for the BBC. In addition, I contributed to the Encyclopedia of Autism Spectrum Disorders. I am a founding board member of Olga Bogdashina’s International Autism Institute in Krasnoyarsk, Russia.

I should add here that I have another speciality totally unrelated to autism. I am the UK’s biographer of the great Chilean poet, Pablo Neruda, who won the Nobel Prize for Literature in 1971. My book, Pablo Neruda: A Passion for Life, was first published by Bloomsbury in the UK and US in 2004 to worldwide acclaim (the late, superb playwright, Harold Pinter, called it ‘a masterpiece’). The book was re-issued by Bloomsbury in September 2013 to include an additional section about last year’s exhumation of Neruda’s body, investigating the possibility that he might have been poisoned by his political enemies. The eight-month forensic tests did not find any evidence of poison but some of Neruda’s family are demanding a further examination of the poet’s remains.

neruda

A book of my translations from Neruda’s Canto general, with beautiful colour prints by one of Brazil’s leading artists, Ana Maria Pacheco, was also published, by Pratt Contemporary, in September 2013.

I recently launched a new biannual hard-copy magazine, called Cantalao (www.pancritica.com/journal.cfm), dedicated to the life and work of Neruda. I also give talks and readings on Neruda around the world. There was a particularly memorable occasion in London last October, when I hosted an evening of recitals of Neruda’s poetry by the celebrated actress, Julie Christie (star of, among many films, Billy Liar, Darling, Dr Zhivago, Far from the Madding Crowd and McCabe and Mrs Miller).

People often ask me whether there is any connection between my two main fields, autism and Pablo Neruda (I am also a translator and interpreter from and into Spanish and write on the cinema). There are no real overlaps at all and the only reply I can think of – a profoundly unsatisfactory one, I readily concede – is that Neruda had a daughter born with a severe disability (who sadly died at the age of eight). I realise, of course, that this response raises many more questions than answers – but I throw it out into cyberspace for others to debate!

2 responses to “Adam Feinstein: My Twin Voyages of Discoveries

  1. Found out two of my grandsons may be autistic. Thanks Manuel, I have thought of you throughout the years and wondered how you made out. I always had you pegged as the one classmate that would go on to accomplish great things. You didn’t disappoint! Congratulations companero! Tom Clayton

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    • Quite a surprise. I would voice the same opinion about you. Always had you in high regards as a friend and academician. We may now have something additional in common; my grandson is autistic.

      Like

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