By William Stillman Jessica Kingsley, 2002 Review by Kristin Nelson, M.A. on Jul 30th 2004
Demystifying the Autistic
Experience is meant to be an insider's revelation to the rest of us about
what it is like to live on the autism spectrum. Rather than examine autism
from a clinical perspective the author attempts to describe and explain the
inner experiences that people with autism have, thus "demystifying"
what often appears to others as odd behaviors and inexplicable needs. This
approach is tantalizing. Those who have relationships with people on the
spectrum can't help but wonder what the world looks like from behind that
Stillman's central thesis is that
we are all more alike than different. In an effort to demonstrate this he
invites us to step inside the autistic experience and consider how we would
relate to the world given the constraints and needs of a person with autism.
It is not merely a phenomenological journey however. The book is replete with
strategies for helping people with autism and those who care for them integrate
into the neurotypical world. What is unique and most valuable about this book
is that it invites us to problem solve based on the values and perspectives of
the person with autism first and the expectations of society second. When the
inevitable compromises have to be made, he suggests we make them in such a way
that we respect the validity of autism as a world view.
It is clear that part of Stillman's
intention in writing this book is to promote his belief that autism is a core
part of the identity of an individual with the disorder – something that cannot
and should not be changed. This latter claim is presented uncritically. That
is, he does not make a case for why we should not attempt to "cure"
autism rather than accommodate it. His point regarding the need to accept the
individual with autism as a person first and foremost is well taken.
Nonetheless, accepting a person with autism as a person with inherent dignity
and rights may just as readily entail a responsibility to treat autism as to
value it. This issue deserves a much more comprehensive discussion, but is not
addressed in the book. In fact, there is very little that a person with
philosophical questions will find to entertain him in this book. It is written
in a straightforward manner that offers pragmatic commentary and constructive
strategies, but not critical reflection.
Stillman draws from his own
experiences as a person with Asperger Syndrome and from the experiences of
friends on the autism spectrum. The most powerful contribution of the book is
its constant reminder that we need to view people with autism as individuals
and not as a set of behaviors. Stillman recounts various incidents he has
encountered that demonstrate the tendency to treat people with autism as
objects to be handled rather than as people with whom to relate. To that end,
much of the advice in the book is geared toward how to relate to people with
autism so that we do not fall into that tired trap.
Each of the book's eight chapters
begins with a bullet point list of what will be demystified in that chapter and
ends with a bullet point list of guiding principles. There is no chance that
the reader will miss the author's intended lessons. Most of the strategies and
accommodations presented in this book can be found elsewhere but the author
does a commendable job of motivating the reader to use the strategies by
linking them to the internal thought structures and reasoning of people with
autism. Chapters focus on the importance of listening to people with autism,
communication methods, the value of passions, educational modifications,
sensory and sensitivity issues, mental health and mental well being,
self-revelation by the author, and finally some exercises for building support
teams. There doesn't seem to be a cohesive theme to the choice of chapter
topics nor is any single topic covered exhaustedly. For instance, educational
accommodations and strategies can hardly be done justice in the twenty-four
pages allotted here. And the chapter on the author's self revelation is not
particularly meaningful nor useful to the reader. On the other hand, the
chapter on mental health stands out as an important contribution to the
generally neglected issue of the lack of knowledge around the co-morbidity of
mental health problems in persons with autism.
At the end of this well-intentioned
book we are left to ask whether the author has succeeded in demystifying the
autistic experience or has he merely revealed the experiences and beliefs of
one person within the autism community? Does he speak for and speak to the vast
differences within that community?
Nelson, M.A., is an assistant professor and medical ethicist at
Rush-Presbyterian-St. Luke's MedicalCenter & RushUniversity in Chicago. She is also the mother of four-year-old twins on the