Caring for a Child with Autism

Ives and Munro have set a lofty goal for themselves in writing a practical guide to caring for children with autism.  For the most part they succeed in this endeavor.  The hallmark of this book is its understanding of the complexities of the medical, behavioral, social and learning issues presented by children with autism and its respect for the emotional, mental, physical and fiscal challenges these will present for parents. A lot of information has been packed into this deceptively small book.

The authors are at their best when compiling and interpreting technical information.  The chapter on “Explaining autism” is highly comprehensible without downplaying the complex nature of this disorder or the difficulty associated with diagnosing and treating it. To that end there is also a section on the history of autism.  It's interesting to note that autism wasn't identified until the mid 20^th century and real interventions have only been available for the last twenty years.  There is also a lot of misunderstanding about autism in its short past that still affects the way parents and autistic children are viewed and treated today.

Another strength of the book is the integration of theory and application.  One of the theories behind autism is that of mind-blindness.  This theory is explained in the chapter “What causes autism” and is discussed again in the chapter on “Social ability” as the rationale behind social skills interventions and in the chapter on “Understanding behaviour” as the reason behind some problem behaviors that are common to autistic children.  So, while it is simple enough for the lay person to understand that autistic children have a problem making guesses about other people's emotional states or even recognizing that we don't all share one mind, it is more difficult to recognize this orientation as the cause of a particular problem behavior.  Passivity and lack of communication in some autistic children may be due, in part, to this mind-blindness – for example, they don't see the point of asking for a drink of water since, surely, their caretaker knows they are thirsty.  The ability of the authors to relate specific behaviors back to underlying theory is very useful for parents when trying to understand what drives their children's thoughts and behavior.

In addition to giving insights into the thoughts and behaviors of autistic children, the authors present a great deal of practical advice for everyday living. It is clear that they have done a lot of research into accommodations and modifications of environment that will enable children with autism to function at their highest level.  They have also done a credible job of addressing the problems that come with various ages and stages along the spectrum.  But the value of the practical advice is hit and miss.  Most of it is of the “It worked for me” ilk.  One example of this is the family that was bothered that their autistic child could not sit at the dinner table while eating.  He would get up and roam between bites.  This is very common behavior among autistic children.  The authors reported that this family solved the problem by removing the dinner plate after the child left the table and not bringing it back.  After a few nights of this the child realized that he had to stay at the table to get his meal.  This sort of solution is fine if it works, but it will not work for most children with this problem.  Many autistic children have sensory integration dysfunction and literally cannot sit still for any length of time.  There are special cushions designed to give sensory input to a child while sitting that might work for this sort of problem.  Another approach is simply to accept this limitation and worry about it when the child's sensory issues have been sufficiently addressed through therapy.

While a great effort has been made to help the reader understand the nature of autism and it's possible causes, this book really isn't a guide to addressing those problems or causes.  The authors state that “sensory disturbances may not be separable from autism,” yet they never mention the many available therapies designed to manage or treat sensory issues.  In fact, this is the biggest problem with the book.  Parents looking for guidance on choosing or prioritizing medical therapies and other interventions will find no such help in this book.   Even the most basic treatments are glossed over and there is no sense that the authors have given any thought to what it takes to formally address the problems of an autistic child – something most parents would consider an integral part of caring for such children.

This book is chock full of useful contacts – if you live in the UK.  These useful contacts are clearly intended to be a major attraction to this book.  However, outside of the UK they are fairly meaningless except for a few Internet URLs and a few resources listed in North America.  This local perspective also makes the chapters on “Sources of help” and “Education” a wonderful resource for those living in the UK, but next to useless for the non-UK audience.  Unfortunately these chapters are written procedurally rather than substantively so the information cannot be extracted and applied to the reader's home community.

Regardless of where one resides, the chapter on “Accepting the news” is a pertinent section of this book.  The authors stress the importance of taking the time to grieve for the loss of dreams and hopes already constructed and to make the time to build new ones.  They examine some of the problems parents will encounter, such as social isolation and criticism of parenting skills, and provide strategies and methods for coping with these.  This is one of the sections of the book that benefits greatly from the authors' apparent warmth and gentle humor. 

In short, this book is best for parents who have a new diagnosis of autism or are concerned that their child may have autism.  It will give them an excellent understanding of what the disorder is and what sorts of issues they may face in the future as well as some of the odd and humorous ways in which families with an autistic member manage to cope.  It is a strong and much needed grounding.  But it definitely doesn't get one very far down the path of addressing these issues.  That remains uncharted territory.  Or perhaps a follow-up book.

© 2003 Kristin Nelson

Kristin Nelson, M.A., is an assistant professor and medical ethicist at Rush-Presbyterian-St. Luke's Medical Center & Rush University in Chicago.  She is also the mother of three-year-old twins on the autism spectrum.