Elijah's Cup

Elijah's Cup:  A Family's Journey into the Community and Culture of High Functioning Autism and Asperger's Syndrome is written by Valerie Paradiz.  The author tells the story of her son, Elijah, and the diagnosis and treatment of epilepsy and Autistic Spectrum Disorder (ASD).  Throughout the book, she effectively puts their journey into a much larger context.  She leads the reader through the stages of symptoms, diagnosis, grief and finally acceptance.  She also provides an overview of the history of Autism and how the classification system for diagnosis has changed since it was first described in 1940's. 

Paradiz provides a history of the psychiatrists who first described these disorders and a brief review of their research.  There is discourse within the medical/psychiatric community about whether Asperger's Syndrome (AS) is essentially the same as High Functioning Autism or a separate independent category.  There is consensus that Autism Spectrum Disorder is the umbrella category with High Functioning Autism, AS and several other disorders falling under that umbrella.  AS is characterized by deficits in social, communication, and play skills along with literal-mindedness and fixations with particular subjects and interests.

The author provides a poetic account of the intersection of the lives of those living with autism and those who aren't.  The author struggles with unanswerable questions about what her child will be like as an adult and frequently questions whether anything she did or didn't do, plays a role in her child's disability.

Paradiz begins by describing her 2-year-old son's diagnosis of epilepsy and questioning other strange behaviors that were not easily diagnosed.  She explains that AS is a complex disorder that is often a challenge to diagnosis and treat.  She describes that their family had difficulty in understanding the disability and their subsequent acceptance of the diagnosis of ASD.

The author explores the historical, philosophical and cultural relevance of autism and how there is a current trend towards the autistic community expressing their needs and experiences through retreats for individuals with autism.  She describes a "blossoming movement of self-advocacy groups that challenge status quo".  Paradiz and her son participate in these retreats and become a part of the autistic community.   Through these encounters they are guided toward a sense of community and accepting others with autism.  The author also comes to the acceptance that she is a parent of a child with autism and she makes a commitment to follow her son's lead and not try to change who he is as a person. 

One of the characteristics of AS is having a fixation with a particular subject or area of interest.  The author's son has a preoccupation with the music of Shumann and begs to listen to it over and over. She states that she was on a steep learning curve with Elijah, living out his fixations. "It was Shumann who first taught me how to follow my son's lead, how to take risks, how to journey into untold intensities".

Paradiz skillfully paints a picture of how it is to experience ASD from the view of the parent. The reader gains an understanding of what it is like to live with autism.   Following are some examples from the book that were particularly relevant.  The author describes that when she strays too far away from her son into the other room, he soon moves into a panic.  She states, "it is as if he requires my steady but silent presence to assure him that he exists".  She states, "There are moments…when life with Elijah becomes so narrow, so rigidly charted and over determined in every action and word that I could burst out in fits of anger and resentment".  She notes that  "autistic children tend to require constant focused activity, or else the carefully constructed cohesion they're experiencing begins to disintegrate stressfully."

One of the most insightful comments the author makes is when she finds herself describing her son in terms of a medical case; repeating to family and friends discussions with doctors in medical terminology.  She writes, "be careful, for in the telling, you forge the essence of a life".  She cautions the reader that what you say, think and believe about a situation is in a sense creating it, and that you have a choice on how you wish to paint the picture of your life.  This is an important caution for any parent; however, I think it is more important for parents of children with disabilities because the child's challenges often require immediate and frequent attention and discussion.  This is out of necessity, such as when advocating for a child for special services at school or with medical personnel. 

The, "Nietzsche in the Bathtub" chapter traces the history of Asperger's Syndrome and how it relates to autism. She frames the research of autism (first written about by Leo Kanner) and Asperger's Syndrome (identified by Hans Asperger) in the larger cultural contexts. She describes that the power struggle between the psychodynamic views of autism was on its way out in the 1990's and the neurobiological perspective was rising.  The author also examines Kanner and Asperger's respective political climates during their research careers.

Often times I think the reason many parents of children with disabilities read books relating to the child's disability is to receive confirmation that someone else has experienced the same thing they have. To know that someone has experienced the same situation, feelings and emotions with their child, serves to validate that parents are not alone, and that they did not cause the disability.

Overall, the book was interesting, informative and entertaining.  However, at times I lost interest, especially in the chapter about Nietzsche where she delves into the history and professional literature relating to Autism, AS and psychiatry.  Some of the information was obscure and broad for the scope of the book.  It is important to note that the author does write movingly, but her strength lies in describing the characteristics of her son and their personal struggles and triumphs.  Overall, the book is well written and I would recommend it to parents and families of children with ASD.

© 2004 Monique Thornton

Monique Thornton earned her MSW in 1993 from the University of Kansas, and is the mother of a 7-year-old with Asperger Syndrome.