Demystifying the Autistic Experience

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 special lens. 

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?

© 2004 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 four-year-old twins on the autism spectrum.