Jools’s memoir celebrates a lifetime of growing up with autistic brother Rob

Growing up in the 1970s and 80s, Jules never saw herself as a sibling of a disabled person – now, her book The Sibling hopes to help others feel less alone in their experiences

To Jools, Rob is just her little brother

As children, the pair enjoyed adventures together, fought, argued and played – just like any other siblings.

At the age of four, in 1975, Rob was diagnosed as autistic and learning disabled.

The diagnosis came when autism was barely understood in the UK.

With official support networks and charities still in their infancy, Jools’s parents were handed little more than a leaflet and left to work things out for themselves.

The family were northern, working class and doing their best.

Rob stayed in mainstream school and life carried on.

To Jools and her friends, Rob was simply her brother.

There was no language then for sibling support, no sense that her experience was something separate or shared by others.

“We just got on with it as a family, we knew no different. But one day we attended a support group organised by a charity,” said Jools..

“It was in someone’s house and very middle class. I remember feeling completely lost, like we were a misfit family.

“We never went back.”

The family moved from Yorkshire to the Midlands for her father’s work, settling in Sutton Coldfield, where Jools spent her formative years between the ages of six and eighteen.

Growing up, family life revolved around routines, hospital appointments with Rob, and holidays that were often challenging.

On one trip to a cold and damp caravan in Portmerion in North Wales, Rob became overwhelmed – stimulated by the colour and noise of the seaside resort.

“My parents held things together in public while quietly exhausted,” said Jools.

“Dad was dancing with a Cindy doll and buying ice creams in an effort to bring Rob back from a meltdown. But for us, this was kind of normal and, through it all, humour held us together.”

As teenagers, music became a shared language between the siblings—Rob loved Gary Numan, Jules loved ska. But Jools always remained fiercely protective of her brother.

Brushing off comments directed at herself, any slight toward Rob brought an immediate response. He was, and still is, a gentle soul.

Jools left home when Rob was eleven, and like many siblings, they drifted apart emotionally as she moved on with her own life, developing a career as a writer.

It wasn’t until adulthood, and much later, that she had the space to reflect on her experiences growing up with an autistic and learning disabled brother.

Rob too moved on, leaving home at the age of 32.

For the last 22 years he has drawn on the support of learning disability charity Hft. Now living in supported living in Hertfordshire, Rob is independent but needs support with finances, personal care, and relies heavily on routine.

The seed of writing her own memoir was planted during lockdown, when Rob’s supported living closed and he moved back in with their parents.

Jools too had moved to Hertfordshire for her husband’s work. With the siblings living closer, Jools and Rob met once or twice a week for walks. They talked, laughed, and looked back on their life together and the experiences they shared.

Those walks became a reconnection, and the beginning of a book, The Sibling.

Jools has spent years writing memoirs for others, inspired by her father’s love of biographies and her childhood wonder at reading strangers’ lives.

This time, she turned the lens inward. The Sibling loops back to before Rob was born, traces their shared childhood through the 70s and 80s, and tells a story rarely heard—that of the sibling.

Now involved with the charity Sibs, which supports people who have grown up with a disabled brother or sister, Jools knows her story is shared by millions.

“I told Rob I was going to write about our childhood and we looked at old photographs together. His input has been as an observer of his own life,” she said.

Rob too is pleased with the book, which is due to go on sale this November.

“The book is good and I have enjoyed reading it and remembering the things we did in the 70s and 80s,” he said.

Jools hopes that the book will allow others to feel less alone in their story of being the sibling of a disabled brother or sister.

“I am hoping the book will give the message to other siblings that they are not on their own and that there are other people with the shared experience of living their lives alongside a learning disabled sibling,” she said

“Writing the book was bittersweet and comforting, but necessary,” said Jools.

“It charts and celebrates everything about Rob and I’s relationship.

“Most importantly, it celebrates having a learning disabled sibling,” she says. “I am always there for him—and I always will be.”

Jools is planning to split some of the proceeds from the book between the charities SIBS and Hft.

You can order the book at all good bookshops or at Troubador at https://troubador.co.uk/bookshop/health-wellbeing/the-sibling or On Gardners – ISBN:9781806347339.

The official book launch is being held at Harts Books (Daunts), Saffron Walden, Essex on November 30 from 6.30pm