Pathological Demand Avoidance Syndrome – My Daughter is Not Naughty

More than one or two eyebrows were raised when I mentioned this book to colleagues; indeed I may have quipped something about my own daughter’s pathological avoidance of demands myself. And I have spent many hours in meetings with parents discussing the relative merits, or not, of attributing labels to children. Essentially, does it matter if a child’s behaviours have an identifiable name? Surely we want to move away from referring to children as ADHD, ASD, dyslexic or – as we have now – PDA, rather than looking properly at the child, at the layers of complex behaviours and addressing each one. Conversely, I know a diagnosis can lead to education, health and care plans, support, funding and help. It is a depersonalised cycle.

Despite more than 20 years in education, including a chunk as a Senco, I had not heard of PDA. It is best understood as being part of the autistic spectrum (people with PDA are driven to avoid demands and expectations; they have an anxiety-based need to be in control) and was first identified in the 1980s by Professor Elizabeth Newson. That it remains a relatively unheard of syndrome is partly the reason why Sherwin’s daughter Mollie was misdiagnosed for years; that and some incredibly unprofessional attitudes from those paid to help. However, this is no fairytale and diagnosis did not lead to magical solutions.

The main thrust of the book is Sherwin’s battle for her daughter. It chronicles the behaviours that her daughter exhibited from about 18 months onwards. She begins by outlining the key characteristics of the syndrome, enabling the uneducated reader to start piercing together Mollie’s behaviour as it deteriorates throughout childhood.

Sherwin’s narrative is direct, not overtly emotional, and it doesn’t have to be. Reading about Mollie’s obsessive behaviour, tantrums, offensive language and jealous rages, makes it clear that this really isn’t about a naughty little girl. The effect of Mollie’s behaviours on her family, particularly her mother, is horrendous: loss of any semblance of a normal family life, leaving a job to home-school Mollie, mental stresses and periods of time as a virtual prisoner in her home. When Mollie’s teaching assistant is signed off from school with stress, when Sherwin genuinely wrestles with the thought of putting Mollie into care, I could not fail to be moved.

What is not so shocking are the stories around Sherwin’s interactions with various different agencies. When Mollie’s school requests that her parents go to the doctor for support, they are instructed to go on a Triple P parenting course, a complete waste of time and money. Child and Adolescent Mental Health Services and the ASD diagnostic team fail to help; one psychiatrist even refuses to discuss Mollie after Sherwin’s previous disputes with her local health services and effectively “blackballs” her. She is left feeling like “a product on a conveyer belt”, trapped in a system creaking under funding cuts, lack of understanding and not able to personalise the care.

It is only when, after one professional had already dismissed PDA as a made-up syndrome, Sherwin’s educational psychologist suggests that the work of Professor Newson and Phil Christie (who also writes the introduction) might explain Mollie’s behaviours. It is at this point that light can be seen at the end of the tunnel.

Following her initial narrative, Sherwin moves on to very practical advice for other parents and professionals. Always very much rooted in her own experiences, she explores how to break the PDA cycle, interacting with others, diagnosis plus some very useful resources.

Ad as if she has not shared enough with us, there are eight pages in the appendices that itemise every one of Mollie’s PDA traits.

It is a fascinating and insightful book: the story of a loving family under intense pressure, of an unbreakable but fractured bond between mother and daughter, of a rare and unfamiliar syndrome that even those we trust most to help know little about. However, saying that, I wonder who the readership will be – it is clearly aimed at other families with children exhibiting PDA traits, although those numbers won’t be excessive. I do hope that the book raises the profile of PDA, particularly amongst professionals, some of who let down one little girl very badly.