Book Reviews

Asperger's Syndrome and Adults...
Is Anyone Listening

A Collection of FAAAS Writings by Karen Rodman
Book Review
by Roger N. Meyer
Copyright 2003 All Rights Reserved

 

Attending to the title, the answer is "Yes."

From the earliest interest in a small group of odd children expressed by Hans Asperger in the middle years of the Second World War until today, research and money - the engine that drives discovery - has concentrated primarily on children.

This collection of contributions by subscribers to Karen Rodman's FAAAS listserv is well past due its introduction to the general reading public. While many readers who have been in the AS trenches a long time may have mixed feelings about the overall tone of the FAAAS listserv, there is no question that the listserv itself and the Massachusetts conferences held by Ms. Rodman over the past three years have had an enormous impact on spouses and ex-spouses involved in AS marriages.

There is another major listserv on the Internet that addresses the later stages of "getting on with adult AS relationships in all their varieties". That listserv, ASPIRES, is maintained by Linda Newland. List emphasis is on support and sharing of problem-solving one's way through AS relationships. The website of ASPIRES is at http://www.aspires-relationships.com/. Ms. Newland can be contacted for membership on the ASPIRES listserv by emailing her personally at "Linda Newland" <OPU@DiskSpaceOnline.net>.

Time is way overdue for extensive exploration of adult issues by adults impacted by autistic spectrum disorder, whether it be "persons with" or "persons affected by". However, as a person on the autistic spectrum myself, I remain sqeamish about Ms.Rodman's choice of the term "afflicted by". Nevertheless, her list serv is one often first turned to by partners in AS marriages who "discover" AS in their spouse. They are often at the first stages of discovery, shock, profound anger, chagrin, self-doubt, and guilt, emotions common to persons whose lives are affected by new, life-changing knowledge.

Only during the past half dozen years has the general reading public seen significant contributions by adults on the autistic spectrum as well as serious writing by the few professionals who "get" AS as an adult phenomenon. However, few have focused exclusively on the relational impact of AS on marriage and the daily as well as long-term management/survival issues of the institution of marriage itself. Illustrative of several books that have discussed these wider issues are two books by English marriage counselor Maxine Aston, and self-descriptions of individual marriages by Gisela and Christopher Slater-Walker, as well as an odd and disappointing book by Patrick, Estelle and Jared McCabe. Other authors such as Liane Holiday Willey, Edgar Schneider, and Stephen Shore touch on the personal aspects of intimate relationships, but they do so in a way that, while personal, still reads somewhat distantly.

This book fairly screams "highly personal accounts." They are tastefully presented. By in large, it is a book of personal pain and anguish, mixed with some hope. However, hope as a phenomenon doesn't occupy a central position in many writers' contributions. Hope and an air of positivism occupies such a position in to the single "other" book published on AS marriages published to date that samples the experiences of those mostly "in" them". Ashley Stanford's "Asperger Syndrome and Long-Term Relationships" is a contrast to this later set of writings edited by Ms. Rodman, mainly because Ms. Stanford, while conducting somewhat the same kind of "search of authors" organizes her book in a thoughtful way around the individual DSM-IVTR diagnostic criteria for Asperger Syndrome with a "plus" missing with Ms. Rodman's contribution. That "plus" is a healthy section on work-arounds, plus a load of tips and techniques in anecdotal tid-bits within each chapterf focusing on survival and personal growth of both partners in the relationship.

Writers in Rodman's book don't "explain" AS. Each of their contributions is a story of its immediate impact on them as sentient, passionate beings. They tell their stories directly and with little interest in presenting either a lesson plan or otherwise primarily "educating" the reader. These contributors share their feelings in a collection of writings in a way no other single authors writing about their marriages have been able to do. While there is much duplicative description of the manifestations of spousal AS, the stories of each writer, no matter how brief or the form taken, are directly "from the heart." What grabs the reader is the immediacy of the writers' responses to the lack of their AS partners' awareness of their more global emotional and sensory needs (expressed with reference to their role not merely as marriage partners, but as parents and social beings) while their AS partners act zealously to protect and defend their own individual needs.

While we await other contributions to the ever widening field touching on spectrum adult relationships, a brief review of related literature may be helpful. Many books by authors already on the market should be re-read with closer attention paid to their description of adult relationships.

Readers less interested in "education" than getting to the core emotional needs of persons on the autistic spectrum would do well to read the earlier contributions of Wendy Lawson and Donna Williams, especially Williams' hard-to-find "Like Colour to the Blind". An excellent new book of collected writings by women on the spectrum is Jean Kearns Miller's edited writings of women on the autistic spectrum entitled "Women from Another Planet - Our lives in the Universe of Autism". Despite the writings of more men on the autistic spectrum, most of men's contributions have a distinctly didactic and "professorish" flavor to them, with the exception of William Stillman's intimate "Demystifying the Autistic Experience". I hope that as time passes, other men will open their hearts as fully as he does to readers. It is both telling and significant that Mr. Stillman's preference in intimate partners perhaps allows him a forthrightness and directness not easily "available" to heterosexual AS authors.

What appears to be breaking new ground to understanding are the books dealing with the special aspects of autistic communication having an immediate impact on the person's abilities to make connections. The work of Michelle Garcia-Winner (a skilled SLP who "really gets it") as well as the contributions of Stephen Gutstein, Ph.D. have done much to get to the core of the logic base of autistic emotion and its connection to connections.

A long-missing concentration on the sensory issues facing adults on the spectrum has found voice in Olga Bogdashina's "Sensory Perceptual Issues in Autism and Asperger Syndrome." (Acknowlegment for break-open discussion of sensory issues is due to earlier contributions of Brenda Smith Myles and others, whose works concentrating on childhood and adolescent sensory issues in education have been largely overlooked for their implications for adults, most of whom remain undiagnosed and misdiagnosed.)

In his lectures and latest writings, author Stephen Shore focuses heavily on the role that sensory issues play in the totality of the autistic person's relation to him/herself as well as to the whole world "out there. Greater awareness of sensory issues should prompt readers of earlier contributions by Willey, Lawson and Williams to re-read their books, this time with far greater attention paid to the exquisite role played by the different sensory experiences life of individuals on the spectrum. Even books as sensationally written as Barbara Jacob's "Loving Mr. Spock: (Penguin, UK) require a new read by readers wishing to understand more about relationships "gone wrong".

As a book issued by a major figure in the public arena who first began to explore AS marriages, Ms. Rodman's is a first of its kind. She and her publisher are to be congratulated for the difficult task of introducing the wide range of issues presented by the contributors to this book. If marriage counselors and counseling professionals were to have two essential books "just to start with," the Rodman and the Stanford books are absolutely essential introductions to the reality of adult relationships in the presence of Asperger Syndrome.

 

FAAAS Website

To Buy

Other Book Reviews:

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Everyday Heaven by Donna Williams

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Love, Jean - Inspiration for Families Living with Dysfunction of Sensory Integration  by A. Jean Ayres, Philip R. Erwin, Zoe Mailloux

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The Other Half of Aspereger Syndrome by Maxine Aston
 

 

 

 

"We each have our own way of living in the world, together we are like a symphony.
Some are the melody, some are the rhythm, some are the harmony
It all blends together, we are like a symphony, and each part is crucial.
We all contribute to the song of life."
...Sondra Williams

We might not always agree; but TOGETHER we will make a difference.

 

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