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Book Reviews: Personal Accounts: Asperger Syndrome   |    
Freaks, Geeks, and Asperger Syndrome: A User Guide to Adolescence ? An Asperger Marriage ? Songs of the Gorilla Nation: My Journey Through Autism
Kamlyn Haynes, M.D.; Jeffrey Geller, M.D., M.P.H.
Psychiatric Services 2004; doi: 10.1176/appi.ps.55.11.1324
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by Luke Jackson; New York, Routledge, 2002, 240 pages, $17.95 softcover • by Gisela Slater-Walker and Christopher Slater-Walker; Philadelphia, Jessica Kingsley Publishers, 2002, 160 pages, $19.95 softcover • by Dawn Prince-Hughes; New York, Harmony Books, 2004, 240 pages, $24

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Here we review three personal accounts of people with Asperger syndrome.

Luke Jackson, the author of Freaks, Geeks, and Asperger Syndrome: A User Guide to Adolescence, is a 13-year-old boy with Asperger syndrome who is living in a seven-child family with three brothers and three sisters. Each of the boys in the family has some degree of difficulty; one has dyslexia and dyspraxia, another has attention-deficit hyperactivity disorder, Luke has Asperger syndrome, and the youngest is profoundly autistic. Luke confidently writes in captivating lay language of his own experiences growing up "not fitting in" and compares his struggles with those of his brothers. In so doing, he has provided a valuable guide not only for teens with Asperger syndrome but also for their siblings, friends, parents of their friends, teachers, and any other person who is perplexed by the style of interacting with others that is diagnostic of Asperger syndrome.

Jackson's book begins with a dedication: "To those of you who feel that you don't belong. Always remember that different is cool!" This sets the tone for a user's guide that offers practical suggestions to teens with Asperger syndrome on how to embrace their differences, celebrate and cultivate their strengths, minimize their social awkwardness, ignore and disempower bullies, and enlighten authority figures. The author proudly introduces the reader to the autistic spectrum by stating, "One unusual thing about me is that I have what some people would call a disability but I call a gift—Asperger Syndrome." He goes on to make a convincing case for his healthy self-esteem.

Freaks, Geeks, and Asperger Syndrome is organized into 15 chapters, each of which addresses specific aspects of Asperger syndrome. Throughout the book are photos of the Jackson family and wonderful cartoons drawn by his teenage sisters. What is most instructive about the book's utility is the reaction to it by teens with Asperger syndrome and their parents. One 13-year-old girl, bullied for years in school, recently stated that Luke's chapter on bullying "made perfect sense." She continued with a smile, all too rare for this teen, "I wish I had read it three years ago. Did you know I had teachers tell me it was my fault I was bullied? Well, it wasn't my fault. Luke is so cool!" One mother had been reading the book on an airplane and was asked by the person next to her why she was reading it. As coincidence would have it, both are mothers of teens with Asperger syndrome, live in neighboring towns, and have become steadfast supporters of one another.

Jackson is a creative and articulate young man who has written a user-friendly guide for anyone who is interested in better understanding the unique experience of teens who have Asperger syndrome

An Asperger Marriage, by Gisela and Christopher Slater-Walker, is not what one would first think it would be. On the basis of the title, the reader might assume that the two partners in this marriage had Asperger syndrome. It turns out that the husband, Chris, does, whereas his wife, Gisela, does not. The book is not jointly authored in the usual fashion; rather, some chapters are written by Chris and some by Gisela. About half the chapters are written by one or the other on different topics, and about half are written by each of them covering the same topic. For those chapters, the chapter by Chris always precedes the chapter by Gisela.

Chris led most of his life, including the early years of his marriage, without a diagnosis. Chris himself says, "there was no recognition in my early years that I was anything other than socially timid, no recognition at school that I was anything other than excessively quiet, unsmiling, and generally difficult to know, and, perhaps fortunately, no recognition amongst my employers that I was unable to exercise a little imagination to go slightly above and beyond the precise, or often not so precise, instructions that I received."

The book presents an insightful exploration of learning of, and coming to terms with, a diagnosis in the autistic spectrum. In many ways, for both Chris and Gisela, the diagnosis proves helpful, because it explains so much about Chris' behavior and accounts for so much of the interaction between husband and wife. One downside explained by Chris is that since his diagnosis he wonders if he is not "even more profoundly affected by Asperger's Syndrome" than he was before the diagnosis. He wonders whether it gives him an excuse. On the other hand, Chris works hard at being not only a husband but also a father. Gisela brings three children from a previous marriage, and Chris and Gisela have a son themselves.

Medication is mentioned in passing. Chris takes citalopram, which has been shown to be of some benefit.

Both members of the couple provide poignant insights, particularly in their chapters about communication. Gisela writes, "His facial expression, as with many people with Asperger syndrome, is fairly flat, which I have, in the past, interpreted as being cross. I no longer continually ask if he is alright." Gisela indicates that Chris lacks most forms of nonverbal communication, that he has poor volume control, that he has a tendency to provide one word answers to questions, that he has an inability to infer, that he rarely initiates conversations, that his reaction to language is inclined to be literal, that eye contact is infrequent or difficult, and that his autistic behavior is all too easy to understand as "deliberate, unsociable, or manipulative."

Gisela struggles to understand how Chris feels and how that affects how he operates, such that this eclipses Chris' efforts to understand how Gisela feels and what might motivate her. He has neither the inclination nor the equipment, something that Gisela must accommodate.

An Asperger Marriage is a testament to a couple's efforts to make a marriage work when one member of the couple has a disability. The two members of this couple are well educated, intellectually bright individuals whose struggles are founded in difficulties in relatedness. Chris' prediction of the future, while realistic, is somewhat unfortunate. He says, "For myself, I think the future will be very much like the present, the restricted social life, difficulties with interpersonal relationships, precarious employment prospects, arms-length relationships with family, and so on are all unlikely to change in any significant way."

One final note: An Asperger Marriage might be read as the extreme example of what is so often heard in couples therapy, in women's reading groups, and occasionally in a men's locker room: the female member of a couple feels more capable of and wants more intimacy than the male.

In Songs of the Gorilla Nation: My Journey Through Autism, Dawn Prince-Hughes takes the reader through her childhood, showing that it had all the landmarks of autistic spectrum disorder: "My need for repetition extended to routes, places, and activities; when we went to the store, the cleaner, or the park I would insist on going the same way every single time." She attempts to explain why this is a necessity for individuals with autism: "Most autistic people need order and ritual and will find ways to make order where they feel chaos. So much stimulation streams in, rushing into one's body without ever being processed: the filters that other people have simply aren't there."

While other individuals described in books reviewed here this month received diagnoses within the autistic spectrum early in life, Prince-Hughes was not given a diagnosis of Asperger syndrome until she was 36 years old. She points out that professionals and the general public alike overlook "the pain and cost, the silent desperation and continued psychological struggles that high functioning autistics undergo every single day." One adaptive mechanism that Prince-Hughes used was drinking; she began in the seventh grade. She would go to parties for free alcohol. She was often the victim of attempted rape, but the "boy or man would be thwarted from carrying out a technical rape by my complete physical rigidity." By the time she was in the eighth grade she decided to avoid everyone and act as though no one else existed. Her behavior was strange enough that other girls in school were concerned. Altercations occurred in the locker rooms, and hence she was removed from physical education class and sent to sit in the library, which became her preferred location because there she could be alone.

However, Prince-Hughes was unable to escape abuse for her differences. She was seen as a "freak." The stigmata she carried included ticks, monologues, imperviousness to criticism, suspicion of authority, disdain for connections, avoidance of social interactions, obsessions with philosophy and anthropology, an odd style of dressing, and a peculiar way of speaking. She was tortured by having her head forced into the toilet, her body slammed into her locker, trash thrown at her in the hallway, her head hit with books, her face hit with spit. She was labeled and treated as though she were "crazy." Unable to bear the torture, she quit school at age 16. She went off on her own, wandered aimlessly, and crossed the country, homeless, surviving on strangers' pity. Her food sources were garbage cans, and her bedrooms were church stairwells.

Prince-Hughes was rescued from this existence by gorillas in the zoo, where she first discovered, "I could choose a course of action and allow that choice to nurture me." She became an expert in gorillas. She learned how gorillas interact socially and then began to apply what she had learned. Prince-Hughes literally started out her reengagement in the social world as a gorilla among Homo sapiens. She began to learn that what in her childhood had been labeled as disabilities could, in an adult woman, be translated in some instances into capacities. For example, her ability to close the world off and focus her mind, which she had admired in the gorillas, became something she could feel positive about.

Perhaps what is most telling and touching in Songs of the Gorilla Nation is how much individuals with an autistic spectrum disorder suffer for not understanding why they are so different. Prince-Hughes questions whether saving people from labels increases rather than avoids pain. At least with labels one can begin to understand. What she came to understand was that the characteristics of an individual with Asperger syndrome as described in DSM-IV are really descriptions of coping behaviors and "not descriptions, necessarily, of innate orientation." As she points out, people with Asperger syndrome seem not to reach out, and do not suffer from a problem of desire but of comfort. The fascination of Prince-Hughes' autobiographical account is that she learns comfort from her intense observation of a gorilla community.

Prince-Hughes' journey ultimately leads her to places of success, both professionally and interpersonally. Her sincerity shines through in Songs of the Gorilla Nation. Having broken through the expressive restraints of Asperger syndrome, Prince-Hughes is free to inform the reader in a simple and honest fashion that those who appear to have more "emotional depth," for a panoply of reasons, share with few. After reading this rather moving account, you may come away feeling, it's too bad gorillas don't write books.




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