About a boy
Ollie: the true story of a brief and courageous life
Stephen Venables Hutchin
The recent glut of books about autism reflects both the burgeoning number of cases and our hunger to read about something that haunts every parent but has yet to be explained. It is not only the weird obsessions and skewed world-view that are so riveting for the reader (and distressing for the victims), but also the way an apparently normal toddler can vanish - like a gift offered, then snatched back. That happy, talkative child still looks the same, but has gone. Where? Why? Can he be retrieved?
Two of the latest books - Ollie by Stephen Venables and Daniel Isn't Talking by Marti Leimbach - reveal the effects that autism can have not just on the child but on the parents, too. Earlier books such as Charlotte Moore's George and Sam have mentioned this, yet discreetly skirted around it. Obviously it is crucial: under the strain of grief, blame, disputes about treatment and sheer exhaustion, an estimated four in five couples with autistic children separate.
Venables is better known as the author of several highly praised mountaineering books, the sort that marvel at landscape and adventure instead of trying to impress you with the author's heroism. Venables has scaled Everest without supplementary oxygen (the first Briton to do so) and was among the first to reach the summit of Panch Chuli V, before he plunged almost to his death on the descent - but he wears these dramas lightly. Bleeding into the snow on Panch Chuli, he greets his rescuers with an apology; he endures the months of hospital treatment needed to rebuild his shattered legs with stoicism, even humour.
So how does he confront the agonising drama that unfolds at home? While Venables is recuperating from his Panch Chuli accident, he and his wife, Rosie, become aware that their toddler's "bubbling, questing, creative eagerness" is withdrawing, along with his speech. This is just the beginning. Ollie becomes so autistic that his parents are reluctantly forced to send him to a special residential school, where he proves to be the most difficult pupil the staff have ever encountered. Meanwhile, he develops leukaemia and endures years of harrowing treatment. Tragically he is then found to have a brain tumour, and dies at the age of 12.
There are repeated blunders by Bath's Royal United Hospital, frustration at the mindless bureaucracy of social services, and years of toil in struggling to educate Ollie and clear up after him. Like many autists, Ollie is fascinated by his own faeces, and feels compelled to smear them over every surface. Oh, and amid all this the family house burns down.
Far from writing a misery memoir, however, Venables celebrates his son's "gigantic, quirky, funny, beautiful, enigmatic, defiant personality", and describes their 12 years together as an adventure that enriched his life. Rosie, in particular, rises to the challenge. She enrolls Stephen with her on remedial courses in London and the US. They build a special playroom in which they, and the army of helpers Rosie galvanises, try to teach Ollie how to speak and play.
The book's subtitle is appropriate, for Ollie indeed shows fortitude in the face of the 40 or 50 operations, the endless needles, the pain. Yet the other story of Ollie is about the courage of his parents. If anything, Ollie brings them closer together, and the book is a testament not only to a brave boy, but to an exceptional marriage.
Leimbach also has an autistic son - however, she has written her touching book Daniel Isn't Talking as fiction. Although she thereby loses the rawness of a true story, she is able to be more open about unhelpful relatives - including unhelpful husbands. In many cases of autism, it is the mother who shoulders the burden, fights doggedly for the child and becomes wrapped up in finding a cause or cure to the exclusion of almost everything else. And perhaps this, even more than the child's disability, is what husbands find hard to take. Leimbach's fictional father - coincidentally also named Stephen - is a selfish bastard; it is not only Daniel who isn't talking. In- stead of supporting his wife, he begins by disbelieving her and packing her off to a shrink, then blames her, and ends by leaving altogether.
Sadly, of the two scenarios, Leimbach's is probably the more common.
Helena Drysdale's latest book is Strangerland: a family at war (Picador)