Caring for a Child with Autism
Full Title: Caring for a Child with Autism: A Practical Guide for Parents
Author / Editor: Martine Ives and Nell Munro
Publisher: Jessica Kingsley, 2002
Review © Metapsychology Vol. 7, No. 4
Reviewer: Kristin Nelson, M.A.
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 20th
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.
Categories: ChildhoodDisorders, Relationships