Is autism the worst thing that can happen to a person? Is ABA – Applied Behaviour Analysis – the right treatment for an autistic child? Should an autistic person get away with being rude? Do autistic individuals not feel empathy? If, as exists for unborn Downs Syndrome babies, a precise test is found to diagnose foetal autism, should the mother abort? Is it wrong, as some high-functioning autistic people claim, to try to ‘cure’ autism? Surely it is important to offer intervention to less able autistic children and adults, to help make their lives more bearable? These are some of the questions discussed in this passionate and informative memoir.
Virginia Bovell’s son Danny, now 31, was diagnosed with autism in 1996, aged three. (That year also, my son, then 13, was diagnosed with Asperger’s Syndrome.) Bovell is Nick Hornby’s first wife. They separated when Danny was five. In her account, Hornby was and is involved with his son. After a ‘lovely’ nanny left when Danny was two, Bovell gave up her job as social policy researcher at the LSE to dedicate herself to him.
Besides autism, Danny also had painful gastrointestinal problems, resulting in a lifelong series of excruciating medical interventions causing him – and his mother – great distress. After giving notice to her employer, she writes: ‘I felt that a tornado had lifted me up out of my previous life and into a new land.’ It is this new land, with all its complexities, that she evokes so eloquently.
I can relate to many situations she describes, although my son is articulate, whereas Danny is non-verbal. I sympathise when Bovell calls those who turn up to help parents of special needs children ‘angels’ and ‘saviours’. One such is Corey:
A young man in his mid-twenties is walking along the pavement. He turns round and smiles at us. My recollection is of love at first sight – platonic; no, more like familial love. It is as if I do know, in my very soul, that an angel has arrived … Corey, you will be there in our best and our worst times. You will be there night and day when Danny is desperately unwell, and you will cherish him as if he were your younger brother. And Danny, for his part, will love you as his big brother, mentor, teacher, protector, warrior, defender.
Years later, Danny will be best man at Corey’s wedding.
Another ‘angel’ is Lee, first just a stranger and the owner of a local music shop, who kindly lets Danny use his toilet. Lee subsequently sets up a Guardian Soulmates profile for Bovell and she meets a new partner, Adrian. (Incredibly, Lee has an enema, to experience what it must be like for Danny to have to endure these regularly.) Yet another ‘angel’ is John, who overcomes his terror of heights to go on the London Eye with Danny and other teenagers and their parents.
Is it wrong, as some high-functioning autistic people claim, to try to ‘cure’ autism?
Bovell also gives us a learned, open-minded and balanced insight into the world of autism. (Her extensive Notes and Bibliography are superb.) In 1997, she was involved in the founding of the Tree House School for autistic children, which Danny then attended. She and Su Thomas, the mother of another autistic boy, set up the pressure group Pace – Parents Autism Campaign for Education – with aims ‘to identify how best to help and support autistic children’. It also called for ‘recognition of autistic children’s existence, their rights and needs, funds for research, more school places and enhanced teacher training’. Bovell stood as a candidate for the National Autistic Society Council, starting as a trustee just as the first autistic person was invited on to its board, whom some thought rude. Typically, Bovell questions that judgment: ‘Was this because he had fewer boot-licking skills than many of us, due to his autism, or just that he may have had to fight harder than many of us, due to his autism?’ Elsewhere, she points out that certain non-verbal autistic people nevertheless have powerful intellects.
Michael Gove introduced Send – Special Educational Needs and Disabilities – in 2014. Since then, the number of children with educational, health and care plans (EHCPs) has risen from 240,000 to 576,000. Parents can bankrupt themselves appealing to tribunals to get funding and some, often with difficulty, pay for special schools, which under Labour will soon be subject to VAT. Bovell cites one despairing parent who killed herself and her autistic son.
The book ends with adult Danny and his flashing disco ball – ‘his nakedness an expression of exuberance and exultant liberation from the chains of pain… of recent days’. As Bovell writes, heroically and with compassion: ‘There are so many ways to be human. There are so many ways to be autistic.’
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