Book Review – When Autism Comes to Roost by Alicia Hendley

autism coverWhen Autism Comes to Roost: A Family’s Journey From Denial to Acceptance, is an honest, raw and poignant memoir told from a mother’s perspective about her journey with her young son through the autism diagnosis process.

The publisher’s website states:

‘It was a typical middle class family with two professional parents and four kids when the parents began receiving notes from nursery school about their 3rd child, Max. This set the family on an unexpected journey together as they struggled to accept and accommodate. An illuminating read for any family faced with an emerging physical or mental disability in a child.’

Psychologist Alicia Hendley and her husband, Joel, have four children. Their second youngest child, Max, has autism. He was diagnosed at the age of three and the book documents over the course of a year, Alicia’s thoughts and feelings as she goes through the stages of grief and loss, as defined by Kubler-Ross in her book, On Death and Dying.  In fact the book is divided up into 8 sections that start at the beginning of the diagnostic journey with Denial and end with Acceptance.

Firstly, I have to say that I thoroughly enjoyed reading this book, and in particular liked the way that it was structured. I felt that when reading the book I was on the journey with Alicia, and that feeling of denial was oh so strong.  It took me back to when my own son was first starting out on his diagnostic journey, at a similar age. I knew something was wrong too, but in the back of my mind there was also a nagging doubt that I was wrong, I hoped that I was wrong.

By reading the book, many memories came flooding back to me, as well as gaining further insight. One example is when Alicia describes her son’s mind blindness and that she struggled to understand how this affected him. This is shown when he asks her what she sees while she is driving him home from daycare. She tells him that she can see a fire station, to which he stars to have a meltdown in response to the ‘incorrect‘ answer. In fact, she is right,  but she has not worded it correctly. What he saw was a ‘fire house‘.

There was just so much that I enjoyed and gained from reading this book.

I found the lists that she makes, detailing what Max’s autism means, (one is made at the beginning and one at the end of the book) hugely insightful. I have to admit that I made one that was very similar when my son was first diagnosed.

I also liked the section that was devoted to Anger. Alicia describes  beautifully that feeling of sheer anger and desperation when your world has been turned upside down, but that for everyone else, life is simply the same.

The fact that the autism diagnosis is also just the start of the journey, not the end, is also an important point that is made. The confusion surrounding what to do once you have a diagnosis is eloquently explained, and I felt that sheer bewilderment that she felt, in not knowing what to do next. What services should be accessed? What are the best interventions? There is no set plan, no rule book to follow, and for many parents this is what is so very frightening.

Finally, I was very grateful that Alicia touched upon feelings of guilt, which are very rarely shared. The guilt of not knowing sooner that something was wrong – the ‘what if’s’ such as ‘what if’ we had acted sooner? That even though there is  no point in looking back, we still do. We still feel the guilt, and this is very hard to admit to.

Who would benefit from this book? Anyone who is affected by autism but especially parents. Sometimes you can feel so alone and isolated, and I found that by reading this book, I had a friend. I understood exactly what this author was feeling. If you are a mother to a child with autism, then this book will speak directly to you. If you are new to the world of parenting a child with autism, then this book will show you that you are not alone and that everything you are feeling is okay, it really is. It gives hope, that although some days will be difficult, you have to embrace the here and now and live in the moment. That is all that anyone can do.

About The Author

photo of alicia hendley by daniel hendleyAlicia Hendley is the mother of four children, including a son with autism. She has a Ph.D. in clinical psychology and worked for years as a psychologist. She is the author of two novels (A Subtle Thing and Type). Her poetry and nonfiction have been published in Room Magazine and Hippocampus Magazine. She was long-listed for the Vanderbilt-Exile Short Fiction Award in both 2010 and 2011. She was short-listed for the 2014 CBC Canada Writes Stories of Belonging competition.

Dr. Hendley is an advocate within the autism community and blogs regularly for an Ontario autism website. Her post (“Mommy, do I have autism?”) was also published in the winter 2014 issue of Autism Matters magazine. Dr. Hendley is a frequent speaker about her experiences on autism and parenting.

The book is available to buy from Amazon and from Barnes & Noble.