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'The best book I have read on Fragile X Syndrome'

Updated: Dec 17, 2021

A review of 'Mental Essence' by Emilie Weight from Jonathan Herring, Honorary Advisor to The Fragile X Society

'This book is the best book I have read on Fragile X Syndrome. It is written by Emilie Weight, but as she is quick to acknowledge the book’s creative force is her son Michael, who has Fragile X. As it says on the back cover:

“My name is Mike. I’m 14. There are so many things I want to tell you but you won’t listen. So my mother had this great idea to share my thoughts with you: how I see things, what my life is like.”

The book is, then, an attempt to set out the world as understood by Mike. It is full of stories of everyday life. Many will make you laugh, and some cry (there are a few soggy pages in my copy). If you know someone with Fragile X some stories will make you grin or sigh in recognition. Of course, every person with Fragile X is different and so some stories may not resonate.

This book, unlike some about parenting, is not sugar-coated. The book is raw and there is no British coyness. It explores the challenges and joys of Fragile X.

At the heart of the book is a radical, perhaps shocking, claim. That rather than seeing Fragile X as a deficiency, which parents, families and society need to help a child overcome so that they can become as “normal as possible”, society should ask what it can learn from Fragile X. Maybe it is society that needs to change, not those with Fragile X. In the book Emile discusses particular lessons that she has learned from Mike: mindfulness, time management and emotional intelligence.

It is easy as a parent to be all too aware of the limitations and challenges of Fragile X. This book offers a refreshing challenge to how we understand Fragile X. Do people with Fragile X have something to teach “normal people”? What does it say about society that those with Fragile X seem less valued? Could Fragile X be a gift rather than a disadvantage? These are difficult, perhaps shocking, questions, but raised by this important book.'

Reviewed by Jonathan Herring, Honorary Advisor to The Fragile X Society


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