Book review: “Why can’t you hear me?”

Citation

Morgan, P. (2022), "Book review: “Why can’t you hear me?”", The Journal of Adult Protection, Vol. 24 No. 2, pp. 126-127. https://doi.org/10.1108/JAP-04-2022-076

Colette McCulloch was 35 years old when she died in a road traffic accident in the early hours of 28th July 2016, having walked out of a specialist facility for adults on the autistic spectrum 18 h earlier. She had been a resident at the facility for seven months, having moved there from a residential hostel. She was initially placed in a locked ward for a period of assessment before transferring to the residential facility on the same campus.

I have a personal interest in Colette’s story, having authored a Safeguarding Adults Review, commissioned by the Bedford Borough and Central Bedfordshire Safeguarding Adults Board [1], which focussed on the period immediately prior to her death. This book does not focus on the Safeguarding Adults Review, its process or its findings and recommendations. It does, however, provide important background detail that put her life and response to people and situations into a broader context and addresses the difficulties that her parents encountered trying to get a proper Inquest into the circumstances of her death.

In this book, Andy and Amanda McCulloch tell the story, through a combination of their own memories, diaries and Colette’s own writings and drawings, of the years she was treated for dyslexia, an eating disorder and mental health issues while her autism went unrecognised. Their description of an intelligent and articulate young woman and her family, both acutely aware that something was wrong with how she viewed and understood herself and her relationships with others, is powerful and heartbreaking but also full of love and, at times, humour.

Colette and her family’s experiences during her pre-school and school years are graphically but sensitively described; the inability of the system to recognise and the ability of girls and young women, in particular, to mask their being on the autistic spectrum is now well-known. Autism is no longer seen as a predominantly male condition. More girls and young women are now being correctly assessed as being on the autistic spectrum. There are now middle-aged women who are in the public eye coming forward, having been identified as being on the autistic spectrum. I’m not sure that Paddy McGuiness’s wife, Christine, would consider herself “middle-aged”, but her honesty and openness about her autism is perhaps both evidence of increased awareness of autism in girls and women and also an encouragement to other women to seek an assessment if they feel as she described in their recent TV Programme “Our Family and Autism”.

This book is not, therefore, about safeguarding adult practice in any theoretical sense, nor is it an exploration of the causation of autism, its identification or the possible treatment or support options to be considered in relation to children or adults who are on the autistic spectrum, What it is, is a description of the harsh realities of life for a family with a daughter who is on the autistic spectrum but who’s behaviour is not recognised for what it is – a combination of a cry for help and a fierce statement of her individuality. It is a statement of what it feels like not to have your needs – educational and social – correctly assessed and identified and to not be safeguarded when the agencies, which are meant to, fail to do so.

The book is a powerful indictment of the agencies and often well-meaning professionals who failed to identify both the basis of Colette’s behaviour and her care and support needs. It exposes the tendency of professionals and agencies to disregard the views of parents and carers, and indeed the children themselves, about the needs of their children or those they care for. What is particularly distressing and clearly expressed in this book is the failure of the facility that claimed to specialise in the care and support of adults on the autistic spectrum to recognise that both Colette and her parents were “experts by experience” and best able to assist the “experts by profession” to best meet her care and support needs.

In fairness to Andy and Amanda, they do recognise that professionals and agencies had been labouring under a period of government-imposed austerity that had reduced the resources available to them to provide care and support services. They also recognise that the demand and need for such services had increased during the same period. That was before the Covid-19 pandemic came along to make a bad situation worse.

This is a challenging read for all professionals working with children and adults on the autistic spectrum and rightly sits alongside “Justice for Laughing Boy: Connor Sparrowhawk – A Death by Indifference” in particular as books that should be required reading on Social Work and Adult Safeguarding courses. It must also have been a challenging book for Andy and Amanda to write; the best way to say “Thank you” to them for doing so would be to buy it, read it and then tell your colleagues to do the same.

Note

1. The Bedford Borough and Central Bedfordshire Safeguarding Adults Board have agreed that I can reference the Safeguarding Adults Review in this book review. The Overview Report is available on the Board’s website.