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.

Categories: ChildhoodDisorders, Memoirs