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Book Reviews: Family Accounts: Autism Spectrum Disorders | November 01, 2004

Eating an Artichoke: A Mother's Perspective on Asperger Syndrome ? I'm Not Naughty—I'm Autistic: Jodi's Journey ? A Different Kind of Boy: A Father's Memoir of Raising a Gifted Child With Autism ? The Boy Who Loved Windows: Opening the Heart and Mind of a Child Threatened With Autism ? The Ride Together: A Brother and Sister's Memoir of Autism in the Family ? Asperger Syndrome and Long-Term Relationships

Jeffrey L. Geller, M.D., M.P.H.; Kamlyn Haynes, M.D.

Psychiatric Services 2004; doi: 10.1176/appi.ps.55.11.1320

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by Echo R. Fling; London, Taylor & Francis, 2000, 207 pages, $19.99 softcover • by Jean Shaw; Philadelphia, Jessica Kingsley Publishers, 2002, 128 pages, $14.95 softcover • by Daniel Mont; Philadelphia, Jessica Kingsley Publishers, 2001, 248 pages, $19.95 softcover • by Patricia Stacey; Reading, Massachusetts, Merloyd Lawrence Books, 2003, 288 pages, $25 • by Paul and Judy Karasik; New York, Washington Square Press, 2003, 208 pages, $20 • by Ashley Stanford; Philadelphia, Jessica Kingsley Publishers, 2003, 272 pages, $19.95 softcover

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Six books by family members of a person with an autism spectrum disorder are reviewed here.

Eating an Artichoke: A Mother's Perspective on Asperger Syndrome, by Echo R. Fling, is the account of a mother's search for a diagnosis for her son—in this case, Asperger syndrome—and her quest to achieve adequate educational services for him.

In 1991 Fling's son, Jimmy, began his third year at preschool. Fling knew something was wrong, because her son was having trouble socializing at school and after three years hadn't made any friends. In fact, he could not tell his mother the name of a single child in his class. Special services were begun when Jimmy entered kindergarten, although the diagnosis remained unclear. Reality began to set in: "My son would be picked up in a special school transportation van. I had heard some of the kids in the neighborhood call these vans the 'retards bus.'" As special services began to increase, still without a diagnosis, it became painfully clear that Jimmy "did not have a handle on the things that many children take in naturally." Teachers began to comment, "He just seems so far away, as if he's on another planet." With the possibility of the diagnosis of attention-deficit hyperactivity disorder, Ritalin was tried, with no positive outcome.

While Fling's son made progress in the academic arena and began with assistance to make some progress in his use of language, his difficulties became more pronounced. Fling writes, "Jimmy started to look handicapped."

Five years after the Flings' journey for a diagnosis for their son began, they had their diagnosis—Asperger syndrome. On one hand, this was a tremendous relief for the family: "I finally had an answer that made sense! At last I had a name for it!" But the Flings' journey was just beginning, and as Jimmy's mother came to understand in retrospect, from the beginning of her noting that her son was "different," "everything about my life would be altered."

Most troubling for the Flings—and also for readers—is that once they were handed a diagnosis, they were handed very little else. They had to depend on Web sites, other families, and serendipity to obtain services that would be beneficial. Jimmy's mother encountered many individuals of whom she is disdainful, "those who treat one or two patients, and then hit the lecture tour as 'experts.'"

Another interesting aspect of Eating an Artichoke is Fling's chronicling of Jimmy's younger sister's response to Asperger syndrome and its manifestations. The sister, at a fairly young age, says, "I hope I never have an Asperger boy, all they do is want their own way and hurt your feelings." The entire family struggled with the sometimes negative reactions of friends, relatives, other parents, and even strangers to the way they had to interact with the family member who has Asperger syndrome.

Eating an Artichoke is not only a chronicle of the evolution of Asperger syndrome in a boy from preschool through early elementary school and his parents' quest to understand his condition. It is a plea to work with parents in their lifelong quest to assist children with special needs.

In I'm Not Naughty—I'm Autistic: Jodi's Journey, Jean Shaw, the mother of Jodi Shaw, a boy with an autistic spectrum disorder, attempts to write an account of her son's life as though it were written by Jodi himself. This literary conceit works sometimes but not always. It works best when the author is telling us about Jodi's own behavior and what he might be experiencing during these episodes. It works poorest when Jean Shaw, speaking through Jodi, attempts to be more didactic, teaching the reader about autism and its interventions.

Jodi's journey starts with his birth and goes through his early teen years. What is both most telling and most typical is how hard Jodi's parents have to work to get him an appropriate diagnosis. Also typical is the parental response as articulated by Jodi: "I finally got a label and I guess I drew the short straw because I got autism. That word again. As soon as it was mentioned my mum's shoulders slumped. It's not life threatening, but for my parents it's like a death sentence. It was the end of all their hopes and dreams for me."

As told from Jodi's point of view, the tantrums that are frequently evident make some sense. As articulated by Jodi, "What else could I do? I couldn't speak, couldn't point, couldn't write, didn't look at people or even at things I wanted except peripherally." Jodi virtually never played with a toy and manifested the heightened sensitivity that is often seen among individuals who have the autistic spectrum label.

Jean Shaw, through Jodi, covers a form of treatment called the Son-Rise Program, which originated from the Option Institute and was devised by Barry and Samahria Kukman, themselves parents of a child with autism. This program had positive outcomes in Jodi's case. What comes through quite clearly is how hard parents have to fight for services and how hard parents have to work once services are provided.

Other aspects of autism are explained, such as self-stimulation, language development, interpersonal relationships or the lack thereof, literalness, and the burden for a child who looks normal because his autism is "invisible." Shaw also covers the burden that a child with autism places on a sibling.

The contradictions of autism are also explained: "I am complex but that's what makes me who I am. I'm autistic but I am not stupid. My brain is full of information but sometimes I have difficulty processing it. Someone once explained the autist's brain as being like a huge storage warehouse with no inventory. This seems like a good comparison."

I'm Not Naughty—I'm Autistic is a quick read and will be useful for anyone in the field who is not familiar with autism. For those who are familiar with autism, longer, more detailed books that portray family interactions, such as those by Clara Park, would probably be more worthwhile. However, the uninformed can learn a great deal about this disorder by taking Jodi's journey as provided by his mother.

A Different Kind of Boy: A Father's Memoir of Raising a Gifted Child With Autism is Daniel Mont's account of raising his son Alex. Born in October 1987, Alex was given a diagnosis of autism at the age of three and a half. This book was written when Alex was 11 years old and growing up in central New York State. Alex was tested early; he had an IQ above 150 and was a mathematics whiz.

Much like Echo Fling's son, Mont's son, although respected by his peers for his abilities, at the age of nine years could barely name anyone in his class. Like other parents of children with autistic spectrum disorders, the Monts were seeing telltale signs of autism early on but had no knowledge of the disorder and hence no knowledge that what they were seeing were symptoms of autism. Simply teaching Alex how to play was a major problem. Alex threw tantrums for no apparent reason, and the Monts were regularly exposed to criticism that they were too "soft" on him. The message they received was that if they set limits, he would behave.

As is repeatedly articulated by parents of children with autistic spectrum disorders, Mont's son "could not infer anything from the context of a conversation." The parent's remedy: "time after time, we had to break down social rules—often using flowcharts or lists—in order to help Alex learn how to deal with some social phenomenon."

Successes sometimes came in strange ways. Nintendo games, such as Mario Brothers, worked well. The adventures of Mario and Luigi are always structured. There is a sensible scoring system. The characters respond to the controls in exactly the same way all the time, and the game is always available. The Internet also became a very useful way to communicate, allowing Alex to bypass some of his dysfunctionality.

A Different Kind of Boy doesn't add terribly much to parental accounts that have been around since Clara Park first wrote The Siege: The First Eight Years of an Autistic Child in 1982. However, each presentation provides slightly different parental perspectives while underscoring the commonality of the experiences between parents and their children with autistic spectrum disorders. It is also particularly refreshing in this case to have a father, rather than a mother, put his thoughts and feelings on the line.

The Boy Who Loved Windows: Opening the Heart and Mind of a Child Threatened With Autism, by Patricia Stacey, provides a different perspective by portraying the "rescue" of a child from autistic spectrum disorders. Stacey's son, Walker, born in 1996 and raised in western Massachusetts, received early intervention from parents who perceived that something was "not right" with their child from the outset. The Staceys had the advantage that Walker was their second child, born four years after the birth of their daughter, Elizabeth.

Told at six months of age that their son would be permanently and gravely disabled, the Staceys went about defying this prognosis. In this case, unlike in many others, the diagnosis of an autistic spectrum disorder was made early, but some experts refuted it. What seemed clear was that Walker had a sensory integration dysfunction.

The Stacey family benefited from two phenomena. The first was an extremely well organized and very well staffed early intervention program that is characteristic of areas in western Massachusetts and others like it in the United States. The second was finding an expert who became invested in being of assistance to them. That expert is Stanley Greenspan, a child psychiatrist in practice in Bethesda, Maryland, who has a long history of studying child development at the National Institute of Mental Health.

While The Boy Who Loved Windows shares insights of parents of a child with special needs in a manner not unlike that of other books in this genre, it provides some other insights. First, it is an extraordinary demonstration of just how committed parents must be to change the course of a disabled child's future by investing much more than would be invested in a full-time job just to interact with their child. Second, the book is a demonstration of the cost of such enterprise, to the point of Stacey's friend's suggestion that she should check herself into the psychiatric unit of a local general hospital. Third, the book shows that to fight the battle and get the resources, parents must be well armed and well informed. The reader is struck by the realization that, without the stamina, education, and wherewithal, Stacey could never have achieved for Walker what she did achieve. Fourth, the book demonstrates that parental and family sacrifice will yield results.

The outcome of all these interventions, services, and parental efforts was that Walker was "not left behind." Although this is cause to rejoice, it also highlights a poignant sadness. What Patricia Stacey and her family achieve is not only not achievable by most families in the United States who find themselves in a situation comparable to theirs, but also not even approachable. Neither the wherewithal nor the resources are there.

The Ride Together: A Brother and Sister's Memoir of Autism in the Family, by Paul and Judy Karasik, is, structurally, the most unique book of those being reviewed here. The chapters written by Judy Karasik are in prose, and those by her brother Paul are in the form of linear cartoons. Although it is an interesting concept, the book doesn't entirely work, partly because it is not until about halfway through the book that the Karasiks ever get around to focusing on their brother, David, the identified individual with autism.

The Ride Together covers the period between 1953 and 2001. It presents an intact family of two parents, three sons, and a daughter and highlights how the children's lives are affected by having a sibling who is "different." This sibling could embarrass his brothers and sister at any point. As Judy writes "my adventure in normal life was ending. I would need to be able to predict with some certainty that the friends I invited over the house could handle David, that they would be cool enough to act as though he was like everyone else if he was having a good day, that they would be smart and fast enough to get out of the way if he was upset." This phenomenon doesn't change throughout Judy's life: "All that week, even through my brother and I rarely spoke, when we did it was in the code of David, I was aware of him all the time. Whether I was on the porch, or in the living room, or cooking supper, I knew exactly where David was inside the great block of the house and what he was doing. It was something like a hangover, a minor, slightly painful distracting all day headache."

Interacting with David from his childhood right up to the time of the writing of this book, when he is in his early 50's, David's siblings had to struggle to understand what he was trying to express. As Judy states, "he had hundreds of tricks that we didn't understand to organize the world." The work then for the siblings is neverending.

The cartoon chapters of The Ride Together are quite informative, particularly in expressing affect. Comics can present the family's real-life events in an actual time sequence while simultaneously presenting the inner thoughts and fantasies Paul was having as his brother put him into embarrassing, impossible, and sometimes mortifying situations.

Unfortunately, the reader needs to be reasonably informed about autism spectrum disorders to appreciate much of what the Karasiks convey in The Ride Together. For the naive reader, this book is the wrong place to start. For the informed reader, this is a quick read that gives some sense of what it is like to have lived in a family with an individual who has an autistic spectrum disorder and to have done so for half a century. In that way, The Ride Together makes a unique contribution.

Ashley Stanford has been the wife of a man with Asperger syndrome for 14 years. She is also the mother of four children, three of whom have been given a diagnosis of Asperger syndrome. She begins her book, Asperger Syndrome and Long-Term Relationships, by trying to find nonoffensive language with which to refer to people with Asperger syndrome (AS) and their neurotypical (NT) partners. She uses the term "Aspie" when emphasizing the strengths of a person with Asperger syndrome. Her book offers practical suggestions on how to understand an "Aspie" partner's idiosyncrasies and struggles to instill hope into relationships that are in trouble. Her overarching goal is to help the neurotypical partner better understand the diagnosis. Stanford, perhaps inadvertently, has also written an exhaustive lay guide to assist with diagnosing a relatively new disorder that is still too often missed by clinicians.

Stanford's comprehensive outline of DSM-IV criteria for Asperger syndrome offers real-life examples that demystify somewhat vague descriptors. Her book is organized into 11 chapters, six of which parse out the diagnostic criteria, phrase by phrase, with individual sections titled "What It May Look Like" and "Implications and Solutions." Although at times this approach makes for a somewhat tedious read, Stanford's real-life examples capture the essence of the experiences of a person with Asperger syndrome. The author validates how difficult it is to be the neurotypical partner of a person with Asperger syndrome yet provides strategies for coping with the disappointment and mitigating some of the loneliness experienced by the neurotypical partner.

Stanford is a remarkable woman who has accepted her "Aspie" husband's shortcomings as a partner and has learned to celebrate his unique strengths. With grace and good humor, she has also found a way to share their experience of a successful "Aspie/NT" union. This book is so comprehensive that it may well prove useful as a teaching tool for new, inexperienced clinicians. It is certainly to be recommended to any neurotypical partners of people with Asperger syndrome and "Aspies" who are interested in better understanding how their styles complicate relationships.

Dr. Geller is professor of psychiatry and director of public-sector psychiatry at the University of Massachusetts Medical School in Worcester. Dr. Haynes is a child and adolescent psychiatrist in private practice in Worcester.

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Jeffrey L. Geller, Kamlyn Haynes; Eating an Artichoke: A Mother's Perspective on Asperger Syndrome ? I'm Not Naughty—I'm Autistic: Jodi's Journey ? A Different Kind of Boy: A Father's Memoir of Raising a Gifted Child With Autism ? The Boy Who Loved Windows: Opening the Heart and Mind of a Child Threatened With Autism ? The Ride Together: A Brother and Sister's Memoir of Autism in the Family ? Asperger Syndrome and Long-Term Relationships. Psychiatric Services. 2004 Nov;55(11):1320-1322.

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