In short, Joe seems more ambiguous than ever. There’ll be no miracle, nor anything like it. And yet, there is something stubborn in me now that wasn’t there before, the feeling that by peering into his autism I’ve learnt only the case for more uncertainty. But uncertainty cuts both ways and nowadays it just won’t go away, this thought, that maybe … just maybe …
Acknowledgements
It takes a whole village to raise a child, and Joe is no ordinary child. So to the teeming metropolis of carers, teachers, neighbours and helpful friends and relatives; the staff at Aldenham, St Margaret’s and Colnebrook schools, particularly Colnebrook’s head teacher Richard; the many professionals from the LEA who always got there in the end; Josie, Joanna and the team from the ABA years; Hester, Tom, Tash, Richard, Orna, Vicky, Jackie and the rest of the staff at St Christopher’s school; Roger and Jean; Ron and Shirley, my endlessly supportive parents and Alan; spotty-dogs Jenny, Jessie, Paul (not least for the running) and Sue, Jo and Simon, most of the other Heathens who’ve tolerated Joe on the rampage through their houses or trampling their gardens, the card sharps and many others who’ve been part of his life before he went to school and since, giving both practical help and emotional support, several of the boys included – Adam, Ceps – little though some of them probably thought of it, I say thank you. I’m grateful to the staff at Great Ormond Street. Annika deserves special mention for years of devotion. I particularly want to thank Joe’s mother, Sarah, who has put her heart into Joe, and knows what it’s like. Then, of course, there’s Cait, whose company, tolerance and understanding has been more precious than she can know.
For help with the book I’d like to thank colleagues at Radio 4 – Nicola Meyrick, Innes Bowen, Rosie Goldsmith – for many useful conversations, as well as Helen Boaden and Radio 4 itself for the opportunity to make a two-part programme called Being Joe broadcast in April 2005, and Mark Damazer for his appreciation. Many other colleagues in current-affairs radio, Smita, Sam, Zillah, Daniel, Mark, Gwyn and others too numerous to name, have been interested and encouraging, creating an atmosphere of appreciative curiosity that helped no end to make sure I was so publicly committed to getting the thing written that it couldn’t be otherwise. Thanks, folks. Felipe Fernandez-Armesto threw his uniquely inquisitive intelligence at me in a way that turned my thoughts on a sixpence, and was never less than marvellous company. I’m also grateful to Simon Baron-Cohen and, for some great conversations and ideas, to Kenan Malik. Mary Colyer has been supportive and asked the right kind of difficult questions, as has Chris Vinz. Thanks too to ‘Magic’ from WrongPlanet.net, for his honesty and insight, and to Karen Pleskus for the example she set. My sharp and mischievous editor Andrew Franklin and his colleagues at Profile gave encouragement to the idea from the off, with an attitude of no-nonsense, responsible enthusiasm that was a breath of fresh air. More power to them. Galen Strawson was generous with his time and advice on points about consciousness, talked me out of saying some silly things about narrative selves and gave other valuable advice, with great sensitivity.
I owe a lot to Andrew Dilnot who read drafts, made typically wise and incisive observations and has been an endlessly understanding, thoughtful and moral voice throughout Joe’s life. Finally, I’d like to thank Katey Adderley, who has been a joy, patient, supportive and encouraging, and who read and re-read every chapter and made numerous helpful suggestions in her customary modest and clever way. The silly things I still say are all my own.
Further Reading
Whatever originality you find in this book is owed mostly to Joe, who has been my excuse for trespassing on other people’s expertise.
For an introduction to autism the single best volume remains Uta Frith’s Autism: Explaining the Enigma (Blackwell 2003). The subject has moved fast in recent years and Frith has been often at the forefront of new research, experiments and ideas. Her book gives historical context, useful case studies, a well-organised summary of the latest thinking and some valuable reflections on trends, therapies and prospects. Francesca Happe, who has worked extensively with Frith, offers a useful short summary of these in support of ideas about central coherence and autism which at the time of writing is available at: http://www.mindship.org/happe.htm.
Simon Baron-Cohen has been a fertile source of ideas and intuition about autism for many years and has also worked with Frith. Mindblindness: An Essay on Autism and Theory of Mind (MIT Press 1997) is an introduction to the ideas he helped develop and popularise which have, I suspect, made more concrete the thoughts of many parents about what’s missing in their autistic children. It goes into a good deal of largely speculative detail about the pieces of mental machinery that comprise our mind-reading abilities and also suggests evolutionary explanations. But it is concerned with the mind-blindness deficit and does not explore, as Frith does, theories which account for the islets of ability in autism. Most recently, Baron-Cohen produced The Essential Difference (Penguin 2004), which develops his ideas, nurtured over more than ten years, that autism is an extreme version of the male (systemising) brain. This is as much a contribution to debates arising from evolutionary psychology about gender as it is to autism research and invites as many questions as it answers, but it’s courageous and imaginative.
Baron-Cohen drew significantly, as I do, on Nicholas Humphrey’s brilliant Consciousness Regained (OUP 1984), which describes our mind-reading capacity beautifully and speculates about its origins and links with self-consciousness. Humphrey describes himself as a theoretical psychologist, a pastime that leaves cold proper biologists like Steve Jones, but with an output that has continually fascinated me. Despite the acclaim his book received, Humphrey has since moved away from its central explanation of consciousness but mostly because he now defines it differently. His latest ideas can be found in The Mind Made Flesh: Essays from the Frontiers of Psychology and Evolution (Oxford Paperbacks, 2002) and the just-published Seeing Red, a Study in Consciousness (Belknap Press, 2006). Humphrey shares a great deal, when he isn’t at affable loggerheads, with the philosopher Daniel Dennett, whose The Intentional Stance (MIT 1987) did much to define and develop the mind-reading thesis.
For those interested in questions about what makes us human, an entertaining and sceptical exploration of the definitions can be found in Felipe Fernandez-Armesto’s So You Think You’re Human? (OUP 2005), an audacious tour of the arguments. Mary Midgley is one of my favourite philosophers and her Beast and Man: The Roots of Human Nature (Routledge 2002) is full of humour and wisdom. John Macmurray’s Persons in Relation (Humanity 1998) and The Self as Agent (Prometheus 1991) are also close to my heart. Thomas Nagel is less directly relevant but The View From Nowhere (OUP 1989) is a seriously clever inquiry into the problem of comparing subjective and objective perception and manages never to forget the importance of everyday experience and intuition. Mortal Questions, also by Nagel (Canto 1979), includes the wonderful essay ‘What Is It Like to Be a Bat?’, which is often referred to in discussions about understanding other states of consciousness. The best popular account of the nature/nurture row I’ve come across recently is Matt Ridley’s Nature Via Nurture: Genes, Experience and What Makes Us Human (HarperCollins 2003). It’s full of detail and arresting examples and has a sustained and powerful central argument which ought to bring some much-needed calm to this subject. I also particularly admire Kenan Malik’s Man Beast and Zombie: What Science Can and Cannot Tell Us about Human Nature (Phoenix 2001), which places these arguments in a historical context to show that our idea of human nature is shaped by our wider social concerns and intellectual fashions.
On the developmental side, Paul Bloom’s Descartes’ Baby: How the Science of Human Development Explains What Makes Us Human (Heinemann 2004) is a delight. It combines philosophy and developmental psychology with references ranging from literature to modern art and neuroscience to make the arresting case that we are all instinctive dualists. It describes much else besides about what babies know, all with an enviable lightness of touch. I h
ave to mention Margaret Donaldson’s Children’s Minds (HarperCollins 1986), part educational polemic, part developmental psychology; it is elegantly argued, a persuasive attack on Piaget and still relevant, I think. As a general reference work and bibliography on child development, I also used Understanding Children’s Development by Peter Smith, Helen Cowie and Mark Blades (Blackwell 2003). It’s not written with verve exactly, but is clear, balanced, thoughtful and covers the ground. Francis Spufford’s The Child that Books Built (Faber & Faber 2003) is a richly intelligent assemblage of memoir, developmental psychology and philosophy that particularly influenced my chapter on storytelling.
Among autobiographies, Temple Grandin’s Emergence: Labelled Autistic (Time Warner International 1996) is the most well known and a fascinating read, but so extraordinary is she that it is not perhaps typical. But then, the typical may never be written. Her more recent Animals in Translation: Using the Mysteries of Autism to Decode Animal Behaviour (Bloomsbury 2005) came out in the UK just as I was finishing this and would certainly have been a stronger influence if I’d discovered it earlier. Lately, I’ve found the exchanges on a website for those with Asperger’s syndrome, http://www.WrongPlanet.net/, absolutely captivating, written with honesty and great intelligence.
I am reluctant to recommend books that offer cures or therapies for autism. Some I find implausible, others more reasonable but still often far too hopeful and tending to claim too much understanding with too much certainty. Too many, in my view, are also published in support of therapeutic regimes available exclusively through some specialist network of instructors which often cost a great deal of money. This is not to claim that they are useless – we have found aspects of them helpful and others have reported impressive results – but they do not suit everyone equally. There’s a desperate need for some thorough, independent evaluation of their claims and methods.
For those seeking general advice about what to do if they suspect their child has autism or who have other general inquiries, the National Autistic Society offers a helpline and much excellent advice and support: http://www.nas.org.uk/ or 0845 070 4004.
Joe Page 18
