Who will care for the carers themselves?

When her brother Lionel was born in 1949, ‘the concept of neurodiversity didn’t exist’, writes Caroline Elton. The subtitle of her profoundly moving memoir, ‘A Portrait of My Autistic Brother’, is misleading. The book is really about the experience of being the sibling of a person who is not like you.

Lionel was nine years Elton’s senior, so she draws on their mother’s testimony to relate his infancy and childhood, turning to her own recollections for the later years. He learnt to read before he could speak, played the piano faultlessly by ear (his mother taught him), and could tell you what day of the week a date would fall on in any year. He was also severely short-sighted and subject all his life to what Elton describes as ‘meltdowns’, during which he stamped on his glasses and bit his hands until they bled.

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Lionel was devoted to his radio, and to strict timetables – disaster loomed if Elton was five minutes late when she arranged to pick him up. He received for almost all his life exemplary medical attention at London’s Maudsley hospital, notably from the pioneering paediatric psychiatrist Sir Michael Rutter. Lionel held down various jobs in supported environments with the help of advocacy organisations, found or even set up by his mother, and he lived in sheltered housing until his final illness.

A psychologist whose first book explored ways in which the sector can support the needs of doctors themselves, Elton is able to navigate both the burgeoning clinical literature and the shifting perceptions of neuro-diversity. She tackles the ‘staggering growth in diagnoses’, for which she suggests that ‘diagnostic broadening may be the most significant factor’.