Marching to a Different Beat – A family’s journey with autism takes us on a journey from babyhood, early childhood and education to their current lives as young adults, and paints detailed and rich portraits of four very different young men.
Despite all the challenges, they have emerged fully intact – endearing, talented, admirable and capable, in ways that coexist with, rather than camouflage, their disabilities.
For people who think they already know about autism and learning disability in the abstract, this book will tell you about autism and learning disability in real life.
It is refreshingly devoid of sensationalism. We learn about the details of painstaking teaching and learning, through to the wider world’s range of responses to autism and learning disability. Ziegel gives us accounts of near despair to tales of fun and adventure.
The book demonstrates why so many parents of disabled children feel continually embattled in their struggle to achieve the right kind of support. It also makes it clear that whatever difficulties families may face within the home, the bigger problem facing them is the struggle against the world outside – the unhelpful strangers, schools, local professionals, officials, and even acquaintances and (former) friends.
But Ziegel also demonstrates how, when the right support is forthcoming from the more positive members of these groups, it can be positive and life-changing.
Ziegel does not shy away from areas of controversy. For example, if you think you already know what ABA therapy is (Applied Behaviour Analysis), or how autism should be viewed, this book may well surprise you.
This book teaches the reader that snapshots at any one stage of a person’s life do not tell the whole truth, even if they accurately describe a passing phase. In describing early grief at what seemed to be a regression in her children, Ziegel also enjoins us to celebrate them with her and take these wonderful boys to our hearts.
Similarly, in telling of her indignation and despair at the inflexibility of some public services, we also appreciate the relief and gratitude she feels when the right opportunities, and the right people, come along.
Her book also offers an important reminder about how differently autistic people may feel about their own condition. We learn that despite their similar upbringing, one of her sons is far more troubled by being autistic than are his brothers. This offers an important message about the limitations of generalisations, and the danger of being black-and-white in our views about autism and disability more broadly.
But aside from these wider debates, the central feeling I came away with was one of affection, connection and admiration for this remarkable family. I am very grateful to have been invited into their lives through this book, and glad that their journey can now be shared among a wider readership.
Marching to a Different Beat – A family’s journey with autism by Sarah Ziegel is published by Lapis Print
