By Jude Ragan, Head at Queensmill School and Autistica Trustee.
The Autistica team recently came on an autism course that I run at my school, Queensmill, which is a specialist school for children who are considerably affected by complex autism. I give out a booklist on this course, of all of the books on autism I have read, and a short synopsis of each, as a result they asked me to give you my top ten, and a short explanation of why.
This task has been a joy. Autism books fall largely into three categories: academic, then those written by people with autism about their experiences or finally those written by parents of people with autism about their child. My top ten contains all. Many of them are surprisingly old, and it has been wonderful to read them all again to ensure that they really do deserve to retain their place, despite the hundred of books I have read since.
1. ‘The Siege: A family’s journey into the world of an autistic child.’ by Clara Clairborne-Park, Back Bay Books, Little, Brown and Company, pub 1967, 1972, 1982
A university professor of English during her working life, naturally Clare writes beautifully. Her daughter with autism, Jessy, was her fourth, and despite this being in the US in the 1960s, when Bettleheim’s erroneous and damaging theories of autism being caused by cold mothering were still very prevalent, Clara was convinced differently. She could immediately see that Jessy was quite different from her three previous children, and yet the parenting was the same. Little written about autism in the 60s, Clara worked it all out by observing her daughter, and the ways she found to “besiege” her daughter’s remoteness could easily still be a blueprint for raising and educating a child with autism. Sadly, this book is no longer in print, but I buy second-hand copies regularly on amazon. I suggest each one of you who reads this review emails to the publisher to ask them to re-publish this very important work: email@example.com
2. ‘Exiting Nirvana: A daughter’s life with autism, by Clara Claireborne-Park. Aurum Press pub, 2001.
A very satisfying sequel. Clara reports that in adulthood, Jessy is happy. “I can’t think of another woman in her forties who is more content with who she is, less likely to questions how she lives or what she does.” Jessy’s determination to stay in her own private world was besieged by her mother’s determination and carefully observed and planned interventions to allow her daughter to exit her own private Nirvana. As an adult Jessy has grown into an accomplished artist and is an active member of her local community with a life that interests and fulfills her.
Similarly out of print, similarly Queensmill School is steadily buying up all available second hand copies on amazon, similarly, please email the publishers to ask them to go again: firstname.lastname@example.org
3. ‘Autism: Explaining the Enigma’, second edition, by Uta Frith. Blackwell pubs, 2003
Uta is one of my personal heroines of autism, her writing being deeply academic and yet easily accessible to those of us who have not had her history as Professor in Cognitive Development. She notes in her introduction to the updated second edition that it is generally now accepted that autism is a life-long condition and that it is inappropriate to search for a cure, mentioning her awareness that this point of view might well be regarded as politically incorrect. Her chapters describing what autism is, whether or not there is an epidemic, and then on all the component parts of autism are erudite, draw upon her many years of work in this field, and are always written fondly and with huge respect for people with autism. I treasure this book. I teach a post-graduate course in autism at Queensmill, and this edition is always central to our reading list.
4. ‘MMR and Autism: what parents need to know,’ by Mike Fitzpatrick. Routledge pub 2004, re-printed 2005
Mike has been a fellow Trustee on the Autistica board, and is still actively involved with our charity. He recently retired from a life’s work as a GP in Hackney. He is the parent of a young man with complex autism. His work is therefore a mixture of the two, professional and academically referenced, and yet always rooted in what he feels parents need to know. This is a reasoned and factually reference debate about the MMR controversy that has lead to so many parents choosing not to have their children vaccinated. The scientific evidence, much of it in response to this scare, showing that the weight of scientific evidence is overwhelmingly in favour of the vaccine, and overwhelmingly of the view that it is not, except possibly in the very rarest of circumstances, linked to the cause of autism. Mike discusses this, and many other treatments that have been used with children with autism, and gives us the scientific and statistical information we need to have to reject them.
5. ‘Defeating Autism: A damaging delusion,’ by Mike Fitzpatrick. Routledge pub, 2008
Again, Mike writes clearly and passionately about those things that we hear about autism, that are put out there on the internet, that are scientifically entirely unproven. Myths about ‘cure’ and ‘recovery’ are damaging, and often divert parents away from understanding the reality of their child’s needs. “Campaigns that channel parents’ energies into the pursuit of wonder cures, or into futile confrontations with doctors, scientists and other professionals, or into litigations over vaccines, offer illusory hopes – and targets for blame and recrimination. At best they divert and dissipate already over-stretched parental energies; at worst they encourage an enduring rage that is likely to compound family difficulties, to intensify isolation and lead ultimately to demoralization.”
6. ‘The reason I jump: one boy’s voice from the silence of autism,’ by Naoki Higashida. Sceptre pubs, 2013
A fabulous little book of a mere 175 small pages, and yet giving us all we need to know about behaviours that are often caused by the core symptoms of autism. I can certainly do no better than quoting the young autistic author’s afterword: “What am I going to be if my autism is never to be cured? When I was little, this question was always a big, big worry. I used to be afraid that as long as I was autistic, I’d never be able to live properly as a human being. There were so many things I couldn’t do like other people, and having to apologize day in, day out totally drained me of hope. I hope that by reading my explanation about autism and its mysteries, you can come to understand that all the obstacles that present themselves don’t come from our selfishness or ego. If all of you can grasp the truth about us, we are handed a ray of hope. However hard an autistic life is, however sad it can be, so long as there’s hope we can stick at it. And when the light of hope shines on all this world, then our future will be connected with your future. That’s what I want, above all.”
In my view this should be compulsory reading for every teacher in Britain, for every health professional, for all those working in social service, police personnel . . . . . . . .
7. ‘A Martian in the playground: Understanding the schoolchild with Asperger’s Syndrome’ (Revised Edition), by Clare Sainsbury. Lucky Duck pubs revised edition 2009
Another very short and yet so illuminating book written by a young woman with autism about her school days. Another one I feel should be compulsory reading for all teachers, all school staff in Britain. Clare writes clearly about all of the difficulties she encountered at school, prior to her diagnosis, and those things that school did for her that helped, and notably those things that did not. She brings the difficulties experience by high functioning people on the spectrum to light, such as: “Because we mostly have apparently ‘normal language’, our communication difficulties are more subtle than the obvious ones of a person who does not speak. Instead, our difficulties often involve the aspects of language which go beyond literal meaning, such as recognizing sarcasm or metaphorical use of language. It is a cliché, but a true one, that a child with Asperger’s asked: ‘Do you know what 6 times 7 is?’ is quite likely to answer simply ‘yes’ without realizing that this was not a factual enquiry but an instruction meaning ‘tell me what 6 times 7 is’.”
8. ‘Thinking in Pictures’ by Temple Grandin
No initial book list in the field of autism is complete without Temple’s clear description about her own autism, and how other young people and adults with autism should be treated. She described how autism has affected here and from this we learn so much through listening to her, a very highly achieving professional woman who is an animal behaviourist and has a successful career designing humane abattoirs in the States. She is also, through years of working with others with autism and those who try to meet their needs, has a remarkable understanding of the whole spectrum and how strategists might better plan services for them.
9. ‘George and Sam’ by Charlotte Moore. Penguin Books pubs, 2004
Like Clara Clairborne-Park, Charlotte was an English teacher before becoming a mum, and writes beautifully. There are so many remarkable things about this book, not least her pragmatic, un-dramatic, at times very funny account of her chaotic life with three boys, two of whom are autistic. The thing I most notably took from it when I first read it is how differently autism has effected her two sons, and how very differently they present. We remind ourselves of this constantly at Queensmill, that the only thing our 140+ pupils have in common is their diagnosis of autism, but how it affects them, and how they present their needs and wants, their senses of humour, their delights and their horrors, is always individual to each child, and as educators we need to always remember that. Interestingly, Charlotte is enough of a fan of Applied Behavioural Analysis (ABA) to have incorporated it into the lives of both boys with success, whilst sending them to special schools that were not ABA lead. Those of you who know our practice at Queensmill will know that although we are not a rigidly practicing ABA school, we use the components of the program as central to our practice but within a sociable context for some of the time, believing that this makes the learning is more meaningful and generalizable for children with autism. I suspect that this was not the case in the practice of the generic special school with attached autism classes that George and Sam attended, where they were welcomed and by all accounts settled and productive.
10. ‘Autism Spectrum Disorders’ edited by David G Amaral, Geraldine Dawson, Daniel H Geschwind. Oxford University Press 2011
A vast academic tome of 1390 pages weighing in at over 3 kilos! (As a back pain sufferer these things are important to me.) This book gathers together in one place 81 recent papers about autism, in headings of: 1. Historical perspective, diagnosis, classification and epidemiology, 2. Core features and developmental trajectories, 3. Psychiatric and medical co-morbidities, 4. Broader autism phenotype, Neurobiology, 6. Etiology: Genetics, 7. Etiology: Environmental Factors, Animal models and theoretical perspectives, 9. Treatment approaches, Best practices in the diagnosis and treatment of autism.
It therefore is the everything-you-need-to-know-about-autism according to current, peer-reviewed scientific understanding and practice. It also serves to show what amazing academic practitioners we have in Britain working in this field, and how important their work is to those of us who work with children and young people with autism.
And if I could just sneak in a couple of films, they would be:
1. The Autism Puzzle Saskia Barron (https://vimeo.com/20748434)
Saskia made this wonderful film in 2002/3 for the BBC. She narrates it too. It is about her brother Tim, who received his diagnosis in the 1960s, and whom she describes as profoundly autistic with additional learning difficulties. Saskia and Tim’s father, Michael was one of the founder members of the National Autistic Society, and is an important voice in the film, as are Prof. Tony Bailey, talking about his research into brain mapping. Prof Ami Klin, is filmed talking about his work in tracking eye gaze and his conclusion that many people with autism track the mouth of the person currently speaking, thereby being distracted from watching and taking in the whole social scene, as well as Charlotte Moore, author of ‘George and Sam’ (No. 9 above). This film for me is still the best at explaining and showing autism and its complexities. It has an early film clip of Kanner, the original describer of the condition, telling us that the two factors of autism are a preference for extreme aloneness, and the strong desire for the preservation of sameness. Whilst researchers and practitioners have filled in far more details between now and then, these factors remain the same in profound autism. Both Kanner, and Sybil Elgar who set up ‘Somerset Court’ the first school in the world to be set up entirely for children with autism, told us that the only treatment for autism is education, and whilst the education now available for children with autism is now more prevalent and scientific, this remains the case.
2. Make Me Normal, Channel 4, 2005. Jon Smith and Zac Beatty, then at Century Films, now at GardenHouse Films. (Available on YouTube)
This film was made in my previous school, Spa School in Bermondsey. Two brilliant film-makers, Jon and Zac spent months in the school, and became real experts in autism. They chose to tell the film through the voices of 4 young people with Asperger’s Syndrome, who were able to describe their experiences through the process of Jon’s delicate and perceptive questioning. It is both heartbreaking and lovely. It shows Moneer at the most difficult period in his life, during which his mother died. He invited me recently to go and see a Chicken Shed performance in which he works as a volunteer to help the children involved in the show. It was an absolute delight to see the remarkable and wonderful young man he has become. Make me Normal won the BAFTA for the best documentary of the year in 2005.
3. A is for Autism, Tim Webb, 1992. Again, now available to watch on YouTube.
This intriguing and beguiling little animated documentary lasts exactly 11 minutes. We know it does, because the narrator, a young man with autism, tells us so at the very outset. It draws cartoons that illustrate how people with autism feel – Temple Grandin’s voice (No. 8 above) is in there too. What is remarkable is that so much of it lets us know of the sensory sensitivities, mis-conceptions and fears experienced by people on the spectrum, and in 1992 there was not a great deal of credence paid to sensory issues as there is now.
I hope this has inspired you to read and watch more about autism. As Naoki Higashida, a young man with autism, wrote in his book (No. 6 above): “If you can grasp the truth about us, we are handed a ray of hope.”
Jude Ragan, February 2015.