Our Autistic Daughter’s Struggle to be Understood
Why Can’t You Hear Me? is the story of Colette McCulloch, an extraordinary young woman, her struggles with her autism and mental illness and the medics who treated her. It’s also the story of how we, her parents, had to fight powerful, state and private institutions, to uncover the truth of failings in her care. Failings which led to her being run over and killed, at 3 a.m. walking back to her care home. She was 35.
Through her early life she had many diagnoses including; anorexia, OCD, Borderline Personality Disorder and eventually, aged 33, Autism. In spite of this she gained three A Levels, took a foundation course in Art at Wimbledon and a degree in English at Sussex University. Female autism is so misunderstood. Recently it’s become clear that up to 40% of female Anorexics are on the spectrum. Women ‘mask’ their autism. But in living this ‘pretence of normality’, thousands cannot cope and their lives unravel. On average autistic women die thirty years earlier than is normal. We have to understand why these tragedies are happening. This can only be done through an open inquest held by a coroner.
The final third of the book is about how we came up against ‘the coroner from hell’. He obfuscated, delayed, obstructed and insulted our legal team. In the end, through a crowd funding campaign and our fantastic human rights lawyers, we faced him with Judicial Review. He backed down and recused himself. A new coroner was appointed. So nearly three years after her death, the failings in care finally emerged. But the emotional and financial cost was immense. No way should a bereaved family have to go through that.
We hope Why Can’t You Hear Me? will be a testament to Colette’s creative, indomitable character. We feature some of her unique, evocative paintings and poems. The book is also a plea – listen to these misunderstood young women, they have so much to contribute.
Virtual Book Launch
Andy and Amanda McCulloch held a webinar for the book launch on 22 April, hosted by Caoilfhionn Gallagher QC of Doughty Street Chambers and including contributions from Merry Varney of Leigh Day Solicitors, Deborah Coles of Inquest, Prof Will Mandy, Jane Asher and more. The event was recorded and you can watch it online here.
Early Praise for the Book
‘This book… is an invocation to health care professionals such as myself that we need to get better at recognising autistic people; and at properly supporting them in a world that is-all-too-often a hostile environment…’
– Will Mandy, Professor of Neurodevelopmental psychology at UCL
‘This book will break your heart – and if it doesn’t it should. It reads like a Greek tragedy. We know the outcome from the start… Yet in this gripping, un-sensationalised account of her life and untimely death, we still hope for a different ending….’
– Jane Asher, President of the National Autistic Society