Our son Penguin was diagnosed with autism when he was four. The signs had been there long before then, and he would probably have beem diagnosed at age three if it wasn’t for us, his parents, who were reluctant about getting a diagnosis. I guess you could say we were in denial, not wanting to believe that the delays in our little boy’s development were signs of a life-long disabilty. Surely there was nothing seriously ‘wrong’ with our amazing, beautiful, happy little man? Surely his unusual ways of doing things were just funny little quirks, and his lack of speech caused by growing up in a bilingual home?
As it turned out, Penguin was diagnosed with autism, and he’s still (at age 10, almost 11) pretty much non-verbal. He’s also still our amazing and beautiful little man, and most of the time he’s our Mr Happy. There have been many days, weeks and months which have been full of struggles, for him as well as for us, and from time to time I’ve found myself thinking that he’s lost his joyfulness. I don’t think there are any parents out there who enjoy seeing your child struggle, their happiness fading away, the giggles becoming few and far between and the sparkle in their eyes dying out. We all want the best for our kids, and we all wish for them to be happy.
Just like millions of other parents of children with special needs, I’ve been searching high and low for ways to support our boy, to make his life as good as possible, and to help him feel happy. The five books I’ve listed below are books which I wish I had known about sooner. There are gazillions of autism books out there, and unfortunately the first few that I read, when Penguin’s diagnosis was new to us, were probably not the most helpful. A couple of them were really quite bleak… These five books however, I’ve found to be positive and empowering, and they offer a lot of practical strategies along with great knowledge and understanding of autism and sensory processing differences. I’d recommend these not only to parents of children with autism and/or sensory processing disorder, but to anyone (teachers, carers, relatives, friends etc.) who could benefit from learning more on these subjects.
Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issues, by Lindsey Biel & Nancy Peske, with foreword by Temple Grandin (Revised Edition, 2009)
This book is written by a pediatric occupational therapist (Biel) and a parent of a child with sensory processing disorder and developmental delays (Peske). It was first published in 2005, then expaned and updated into this 2009 edition.
The book consists of five parts, each split into several chapters and/or subsections. The way the book is layed out is very clear, and as a reader you’re guided forward step by step, in an easily read and comprehensible manner.
The first part of the book is about “Recognizing and Understanding Your Child’s Sensory Issues”, and it explains almost everything about sensory processing, such as: What is it? What behaviours or other signs can signal sensory processing disorder? What is hyper- and hyposensitivity? It also explains about our seven senses, that is the usual five plus the vestibular and the proprioceptive. It doesn’t mention interoception (how the body senses its own internal signals), which I’ve elsewhere seen being referred to as ‘our eigth sense’. In this first part of the book, you’ll also find a checklist to fill in, to give you a clearer picture of your child’s individual “sensory portrait”.
Part two of the book is “Addressing Your Child’s Sensory Needs”, and here you’ll find loads of useful hands-on strategies for all areas of life: Everything from toileting dentist visits, via eating out, swallowing capsules, waiting rooms, parties, holidays, going swimming, and more! The book is packed with practical suggestions and it’s all straight to the point and using bullet lists, so you’ll be able to browse through quickly and find the things that apply to you and your child. It also explains what a sensory diet is and what kind of activities one might include, as well as what role an occupational therapist can play in helping your child with sensory processing disorder.
The third part of the book discusses related issues such as autism, developmental delays, speech delays, selective eating, issues with sleep, stress, nutrition, organisational skills etc, while part four focuses on parenting strategies and how you can support and advocate for your child.
In the fifth and final part of the book, Biel and Pesky share their favourite products and resources, such as specific toys and other equipment for working on sensory processing, and useful websites, organisations etc. The book also contains plenty of references for further reading.
All-in-all, Raising a Sensory Smart Child is an amazingly helpful and very reader friendly book, and one that I keep going back to every now and then.
The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder, by Carol Stock Kranowitz (Revised & Updated Edition, 2005)
About three years ago, I found a facebook group for parents of children with SPD, and it was quite a revelation to me to find how absolutely central sensory processing is to Penguin’s differences. Although I’d heard and read a few things about sensory differences in autism, I hadn’t grasped how many of Penguin’s autistic symptoms/traits that stemmed more or less directly from his sensory processing differences. So many of his ‘behaviours’ that were actually sensory needs, ways of regulating a nervous system which could be seen as ‘out-of-sync’. To understand these things has been life-changing.
In the above mentioned SPD parents support group, The Out-of-Sync Child was regularly mentioned as being one of the best books to read for better understanding your child and their needs, as was Raising a Sensory Smart Child. So I got my hubby to buy them both for me for Christmas, and I then read them parallell with each other. In some ways the two books overlap, and in my opinion, if you’re only able to get one of them I’d go for Raising a Sensory Smart Child. However, The Out-of-Sync Child is much more in depth when it comes to explaining and defining sensory issues, and identifying how they affect your child. In fact, a whole two thirds of the book focuses on “Recognizing Processing Disorder”, which is also the heading for part one of the two parts that this book consists of. It describes extensivly what SPD is (and isn’t) and how the senses work, and then goes through five of the senses – tactile, vestibular, proprioceptive, visual and auditory – in turn, with examples of how a dysfunction in processing for each particular sense can express itself in different ways and checklists to help you identify what applies to your child.
The second part of the book, titled “Coping with Sensory Processing Disorder”, focuses on what professional help you may be able to get (based on what it’s like in the US), as well as what you can do at home and in school to support your child’s needs. There are about 15 pages of suggested hands-on activities for helping with development of the tactile, vestibular, proprioceptive, visual and auditory senses, which you can do at home with your child.
So, The Out-of-Sync Child is less hands-on than Raising a Sensory Smart Child, and not as quick and easy to read. But it explains more about the mechanisms behind the symptoms/behaviours and how to identify what applies to your individual child.
The Autism Discussion Page: on the core challenges of autism AND The Autism Discussion Page: on anxiety, behavior, school, and parenting strategies. Both books by Bill Nason, and both with the same subtitle: A toolbox for helping children with autism feel safe, accepted, and competent (2014)
These two books are the result of a facebook page which Bill Nason started for sharing his knowledge and experience from his long working life as a mental health professional, mainly working with ‘challenging behaviours’ and develomental delays, and often with autistic individuals (both children and adults). You can get a very good idea of what the books are like by reading the posts on Autism Discussion Page on facebook, as most (but not all!) of the posts there are ones you’ll also find in the books.
The facebook posts have not been edited for the books, which makes for a bit of an unusual reading experience, but I’ve found the content so extremely helpful that any issues I might have with the format become irrelevant. If you know an autistic child, whether it’s your own or a child that you work with, or maybe the child of a friend or relative, I strongly recommend that you look start following the Autism Discussion Page. I think you’ll find information and strategies which are truly helpful, and if you do, I suggest buying the books as they make it easier to go back and find posts on specific subjects, when needed.
The Autism Revolution: Whole-Body Strategies for Making Life All It Can Be, by Martha R Herbert, with Karen Weintraub (Paperback Edition 2013)
Dr. Martha Herbert (who’s written this book together with journalist Karen Weintraub) is a Harvard Madical School researcher on brain development as well as a practising neurologist. This book links her scientific knowledge and understanding with what she’s observed through many years of working with autistic individuals. It may not be as revolutionary as the title suggests, but it focuses on how many symptoms of autism can be significantly improved by focusing on physical health. It is NOT a book about trying to ‘cure’ autism, but about increasing wellbeing and quality of life.
For me, this book is brilliant in the way it combines a positive view on whole-body interventions (dietary changes, stress reduction etc.) with a scientific perspective and real and detailed knowledge about how the brain works, and about brain-body connections.
I have seen some mixed reviews for this book, and it seems like those who are most dissapointed with it were expecting Dr Herbert to be against vaccines, which (thankfully, in my opinion) she isn’t. Some also criticise the book for not giving specific instructions in regards to dietary interventions, while others are upset about Dr Herberts critical stance against risky procedures such as chelation. To me, all these things are not negative but positive aspects of the book! Dr Herbert has observed that a lot of homemade interventions actually seem to work, and she can see that they make sense from a biological/neurological perspective. But she knows that it’ll take years to conduct the scientific studies needed to make these practices more established. So she’s published her observations and conclusions in this book, saying why not try? But, importantly, not in ways that put the autistic person’s wellbeing at risk, or causes any serious discomfort.
To me, The Autism Revolution is an amazingly helpful and hopeful book. It also gives credit to how families of autistic individuals are often struggling to find better ways of understanding and helping their family members than what the systems (medical professionals, schools, psychologists etc) are offering them.
I’m aware that there are many other great books out there on these subjects. These five are the ones I’ve found most useful so far, out of the few that I’ve read. If you have a favourite book which you think is a must read for anyone who has a child on the spectrum in their life, please share in the comments below!
A book which I haven’t yet read myself, but which is at the top of my list of ones to buy in the near future, is The Special Parent’s Handbook by Yvonne Newbold. I follow Yvonne’s facebook page as well as a fb group she administers, and her knowledge, experience and wisdom shines through in all of her posts and replies. I can wholeheartedly recommend checking her website and YouTube channel out, especially if you’re dealing with a special needs child who sometimes displays aggressive, violent behaviour.
If this post has been of interest to you, you might also like to follow our facebook page, where I share posts on activities, strategies and other ways of helping our kids on the spectrum. I’d love to see you there, too!
If you wish to buy any of the books listed in this post, please consider using the links I’ve included here for your convenience! You can either click on the miniature pictures below or the titles in the text, and these links will take you straight to amazon.co.uk. These are so-called affiliate links, which means that if you go on to make a purchase via these links, I’ll receive a small comission from Amazon, at no added cost to you. Again, as said at the top of the post, I’ve not been sponsored in any way to write about these books. My selection and all opinions expressed here are my own.