Looking After by Caroline Elton: Why I didn't tell my autistic brother he was dying

On her deathbed, Caroline Elton’s mother extracts a solemn promise from her two daughters: that they will look after their brother Lionel.

Only when they agree, can she utter her final words ‘It’s a deal,’ and rest in peace.

Elton and her sister Liz are then left to look after 68-year-old Lionel who has autism, and who – along with his exceptional musical talent and dedication to his work as a postroom clerk – can also be extremely difficult to cope with.

This memoir will be welcomed by carers as it doesn’t sugar-coat the struggles they can face – but also reveals the strength of family connection.

Elton decided to write Lionel’s story because autism is so often thought of as a childhood condition. ‘I realised,’ she writes, ‘there has never yet been a cradle-to-grave account of an autistic person’s life.’

She also realised how the NHS often pays little attention to the needs of autistic patients facing a terminal illness.

When Lionel was born in the 1950s, doctors suggested he should be institutionalised at the age of four. Elton’s late mother, Marcia, was having none of it.

She comes across as truly formidable – relentless in her desire to get him the best treatment. Through sheer persistence, she manages to get Lionel seen by the best in child development.

These include Donald Winnicott (the originator of the phrase the ‘good enough mother’) and Michael Rutter, later known as the father ofchild psychiatry.

Marcia looks after Lionel’s housing, finances, health and holidays until she dies at the age of 94. And suddenly Elton and her sister Liz find themselves as their brother’s carers – a man who retches at the smell of cheese, cannot bear uncertainty and stamps on his glasses or bites his hand when distressed.

Elton is unsparing of herself, talking about the embarrassment she felt as a child of having a brother who would push her down the stairs or shout in restaurants.

Coupled with this are the genuinely moving accounts of Lionel’s happiness at going on holidays, or being invited round for a sabbath meal on Friday nights – and then his diagnosis with leukaemia only two years after his mother’s death.

As a veteran psychologist, Elton writes incisively about the difficulties of navigating the health service with a man whose condition makes him intolerant of any uncertainty.

So what to do when it’s clear his leukaemia is terminal? Elton and the medical team agree not to tell him – as to do so without being able to tell him the exact time and date of his death would rob him of any peace.

In the last part of the book, the brief months that Lionel has left – too late to go on the trip to Texas to visit Buddy Holly’s birthplace he has dreamed of – are full of poignancy. It charts how Elton and her sister, having dreaded the responsibility of caring for Lionel, come to an understanding.

Elton reminds us that autism is not a ‘Peter Pan’ condition affecting those who remain children for ever. She writes a powerful and unusual book that pays tribute to her brother.