“Something Different about Dad”
How to Live with your Asperger’s Parent
Kirsti Evans/illustrated by John Swogger
Jessica Kingsley Publishers Copyright 2011
ISBN 978-1-84905 114-9
Price: US $18.95

Review © Copyright 2011
Roger N. Meyer
All Rights Reserved

An aside to the reader.

This reviewer must admit he did not carefully check the publisher’s table of contents carefully when requesting the book for review. As I specialize in working with mature adults on the autistic spectrum, I mistakenly thought the value of the book, even as suggested by the title, would be high for adult children of a late-diagnosed older parent.

I was wrong, but since I promised a critical read to the publisher, here’s my take on the book.

For adults, it’s a great, fast read. I suspect that just the addition of a bookmarker to this slim little volume, it is an easy book to take up and put down without fear of losing one’s place or forgetting previously-read content.

Yet to be published but undoubtedly in the publication pipeline are authoritative treatises about how to deal with aging spectrum-sitting parents – not simply the broader category of persons of all family statuses on the spectrum. As depicted in this book, mature adult diagnosis of autism spectrum has become commonplace. However, given the explosion of literature in what has become the full-blown autism spectrum condition industry, eager lay and professional gerontological subject matter readers may yet see a proliferation of well-written books covering that family relationships issue, and books written from a holistic family-dynamic-over-time- perspective.

In this rambling review my personal and professional work not only serves that current and future market but anticipates its more formally considered attention by more intellectually disciplined authors than me. I beg the reader’s indulgence in at least hinting at some of the “what if’s” a book such as “Something Different about Dad” could address, not only for older readers, but for readers of the same age the author and illustrator have targeted their book. My observations include musings about where another version of this book for that readership could take us. It starts from a broader perspective than the one adopted by its author and illustrator.

As an adult child of now-deceased parents both of whom would today be found to be somewhere on the autistic spectrum, some of the points I am about to make do have a ring of authenticity, although here I speak mainly for myself aided by comments and agreement by many late-diagnosed adults from their late twenties through their seventies. The gravitas of my remarks has also been substantiated by comments and musings of other late-diagnosed adults in well over two thousand wide-ranging consultative contacts with late-diagnosed adults, their spouses and extended family members. Their perspective is further supplemented by comments of hundreds of mature adults who’ve attended our peer-facilitated Portland (OR) Asperger Syndrome Adult Support Group, which has met continuously since September, 1998.

First, a bit about the book’s intended audience, and the format the author and her illustrator have chosen. I do not quibble with the author about the volume of information provided about Asperger Syndrome as a clinical-level concern. I do not take issue with the way the publisher has packaged the high volume of this information, or the sensitive manner in which the author has treated extreme behavior as a difference and not a disorder, deficit, disease, or any of the descriptive terms in the literature focusing on other dis terms. Indeed, all parents – on and off spectrum -- demonstrate less extreme examples of the father’s manifestations of AS. As my colleague Stephen Shore, Ed.D. is fond of saying and is frequently paraphrased, “We’re just like everyone else, only more so.” Indeed, that’s a reassuring point frequently repeated throughout this little jamb-packed book by author Evans.

I start with a simple observation. Throughout the book, Mark, the father, is depicted with a generally unchanging, limited set of facial expressions, and in all instances, with eyes noted by some reviewers as “blank.” I personally believe the point the author wishes to make has been overdone. Even when Mark is depicted as having become more sensitive and aware, his stoic image undergoes little radical visual change. No one, in an intact marriage of the length depicted in this book, is likely to maintain a gestural or resting face mask as impassive as Mark’s, at least not for the duration. Family photos taken over time can bear that out.

Furthermore, there is a marked difference in the role which Vicky has been chosen to perform, and another one barely if at all hinted at. For purposes of educational and editorial simplicity, Vicky has been cast in the role of interpreter/explainer of social and communication norms to her husband. There is another role that accompanies that of interpreter, especially in long term, intact marriages, and that is the role of translator. This is an active role all significant actors do take up in real life. Unfortunately, neither its process nor its necessity is well-covered in the book. However, this is a vital, healthy-dynamic-sustaining-role which all members of an intact and well-functioning social unit perform for a social communication-challenged member. Without attempting to initially change the way Mark thinks, everyone in the family takes for granted Mark’s own unique language and logic – which they have learned about as a function of just being around, plus his known hyper and hypo sensitivities, and adapt their language and their behavior towards him with regard to this more sophisticated aspect of understanding and relating to someone who is different.

While marriages with such a diffident spectrum-sitting partner exist, very few of them present the Hollywood film ending portrayed in this hopeful little book. It is good that the author starts off through the voice of the seven year old, but quickly includes a strong cast of natural supports in the person of adult friends, an uncle, his pregnant wife and their children, Mark’s father, and relatively undeveloped figurehead characters alluded to as the mom’s helpmeets. It is good as well that the two children of this family are portrayed as having their own age-appropriate positive natural and formal supports as well.

However, it is not OK or even ordinary to portray this family as one that is as “open” as the author describes. Most adults on the spectrum I’ve known, -- presented with even the most sympathetic depiction of the father in this book – would have volumes of comment about how unrepresentative and Pollyannaish is the author’s depiction of this family life. It is simply not the case that someone with a life-history of behaviors and routines as extreme as Mark’s would or even could maintain the semblance of family life presented in this book as an open family. Behaviors as routinized, rigid, unwaveringly brittle and for the most part, sentiently unacknowledged by the father generate deep, lasting emotional responses by children subjected to them, even when corrected, as they’re depicted as resolved – to some extent – in this book.

These behaviors cannot and should not have been portrayed as having as little an effect on significant “outside the family actors” as they have, unless it’s the author’s intention to construct a peculiarly narrow and dishonest depiction of major social communication deficits that are repeatedly tolerated even in the diverse society that English culture has become. They certainly do not mirror what is known about the difference in family life and family culture of North America or Australia/New Zealand. Indeed, both non-UK cultures are notably more diverse, but also present more animated general cultural responses to extreme behavioral differences, sometimes for the better; often for the worse.

There is a level of intellectual dishonesty in the sun shiny portrayal of outcomes depicted in this book that does not allow a life- experienced reader – as opposed to a naïve or unexposed reader – to, for one moment, indulge in the willing suspension of disbelief that would allow these cartoon depictions to create authentic and long-lasting re-orientations of memory essential to make the point the author and illustrator try to make. Here we’re talking about a reader of any age of the characters depicted in the book carrying away from a read-to or self-read experience. For the higher functioning partner in this marriage, Vicky the mom – the extent to which her exertions do not appear to involve a realistically-presented negotiated settlement or change in her husband’s everyday, small-issues behavior, whether such behaviors involve his parenting or his expressed understanding of the heavy lifting his wife has had to perform in order to assure some degree of comfortable stasis in the overall family dynamic – simply does not ring true.

In this regard, there is an unstated but very clear and consistent level of suffer-all “my way or the highway” response expected of primary family members impacted by Mark’s social conduct, whether he’s under stress or not, that has this reviewer harking back to an exceptionally disquieting book entitled “Living and Loving with Asperger Syndrome – Family Viewpoints” by Patrick, Estelle and Jared McCabe first published in 2003 by Jessica Kingsley Publishers but later quietly dropped from print.

That book presented a frank shared-contribution written picture of a family totally under unilateral control of an imperious AS husband and father. The extent to which both his spouse and her teenage child describe their total submission to the control-freak routine and demands of Patrick presents an unparalleled look into an exceptionally destructive level of domination found only in the more sensationalist depictions of Asperger Syndrome family dynamics not published by this well-respected publisher. Absence of that book on the current JKP booklist says volumes about how far we’ve come in setting higher cultural expectations which reject high levels of abusive conduct within closed families. This reviewer only wishes Evans as an author – albeit one influenced by some unique aspects of UK family conduct – had demonstrated adherence to a more universal moral compass –one that more comprehensively respects the personal boundaries, individuality and essential core values under development or held by all primary family members.

Put very plainly, a number and permanency of some fixes proposed by the author – despite the sensitivity of their introduction – stretch the points being made beyond credibility into incredulity. Unless we’re back to suggesting preference for a 19th century Prussian family model, for this reviewer there is simply too much unquestioned acceptance of Mark’s uncorrected habits and routines to suggest a plausible resolution for non-UK families. Even so, the author’s fixes are good and appropriate, but presented as they are, briefly, and without hiccups and long learning curves with their costs and benefits explained in ways that a seven and fifteen year old -- let alone an adult – can understand and relate to in real life, begs the adult book-buyer’s support beyond the breaking point.

Even though I have not participated in the partners, family members or friends’ discussion on the list serve of www.aspires-relationships.com for some time, I can assure readers of this review that all is not well in the whole family touched by clinical level social communication dysfunction, nor is it as depicted in this hopeful little book, whether the sunshine is brought by Sophie, the author herself or Vicky, the mom. I can say the same as a co-moderator/co-facilitator of a unique AS Partners support group that met continuously in Portland for over nine years. I don’t wish to cast a dark pall on the book, but its authenticity and staying power must be questioned in light of even the best outcomes in intact AS marriages with children which have survived and about which mature adults, later describing their primary family relationships, show considerable sophistication and a remarkable degree of compassionate late-life understanding.

[An organization as long-standing and successful as the Asperger Association of New England may have individual professional, clinically trained facilitators of short-term, limited duration support groups for spouses, partners on the spectrum, and parents of adults on the autistic spectrum may also have participants or of those groups or its professional facilitators offer helpful comments about this book. Similar commentary could be solicited from the coordinator of the Sydney based Aspia and other related partner groups in Australia to be found at http://www.aspia.org.au/groups.html  See also the early website of Sennur Fahrali at http://www.abridgetogether.org/.]

I look forward to comments, if solicited, from AS professionals and AS authors who have written about family dynamics, and, specifically, about AS relationships. While it may be difficult for adults to put themselves in the shoes of the child/adult/author narrators in this little volume, I’m sure that if pressed, they’d have much to say about the book, given their vast experience in the trenches working with all members of an impacted family.

While it is neither possible nor appropriate for Evans and her illustrator to delve into the individualized formulas for marital success in a book directed at a pre-pubescent child and her sib further advanced in age, to this reviewer’s taste there is an excessive amount of prescriptive given and rapidly taken feel-good advice surrounding the heroic figurehead of the long-suffering, patient, care-giving, mom-to-an-adult-husband without strain and without clearly obvious personal psychic costs to the mom and wife. For a book nonetheless directed to children, I believe it important that adult clinical specialists and contributors to professional best practices family dynamics literature offer their response to this book.

One area of un fleshed detail stands out starkly in this book. Except for brief mention of the mom’s work (as a health professional) and frequent mention of a sketchy, almost idealized depiction of Mark’s actual employment, there is little discussion about how both parents deal successfully, within a healthy family dynamic, of the effects of their work not only on their relationship, but also on the children. For a book targeted at children and adolescents and half narrated in a child’s voice, it is understandable that the author would want to connect to them through children’s typical interests and the ways in which they spend their time away from the home setting. But it is intellectually and emotionally dishonest to cast such short a shrift on the complex effects on children of two full-time employed working parents who must weave the challenges their work lives obviously present to them as adults into the rich tapestry of a family life at home. Indeed, there is some chance that Mark’s diagnosis may have come about as a result of concerns long held that may have ultimately come to a head by his employer.

One more thing should be said about children and their understanding of adult employment, and its complex place in personal and family life. If it can be assumed that neither child in this book is on the spectrum, extensive research about the age at which children gain their first – and often lasting – understanding about the values attached to work, indicates that children form their attitudes about adult work as early as age six. I do not argue for a re-writing of the book, but I do ask that authors of books addressed to children even younger than those for whom this book was intended really look at the outcomes of child thought as manifest in adolescent and mature adult behavior. Advice glibly provided by authority figures to children as young as the readers of this book might be more carefully considered, or at least etched with nuance not found in most prescriptive literature aimed at children. Children raised in families where there is communication dysfunction, miscommunication and shortfalls in traditional caregiver affective behavior often display a level of understanding far more advanced than is given them credit. After all, they too have to develop survival strategies in worlds outside that of their immediate family, and they often do so despite a less-than-supportive environment at home.

Although the purpose of the book isn’t to present children with much more than a sensitive introduction to their father’s recent diagnosis, Sophie’s story presents nothing leading up to the decision to diagnose, or the trip to the doctor or psychologist, and what kinds of things preceded what, to at least her father, could be depicted as a life-changing event had the author chosen to include this information. While there may not have been author or editor attention placed with the pre-diagnostic history of this family – most likely to preserve the singularity of the book’s purpose -- to ignore the pre-diagnostic turmoil and the feeling states of all in the family and those within the family’s natural support system has the effect of falsifying history and engaging in a degree of intellectual and emotional dishonesty that children of seven and fifteen (and between) can easily detect.

If a book is to have value to an individual beyond the age when it was first read, including references to and invitations into more universal life lessons would be helpful. While this book does present some of those lessons, repeatedly, to this reviewer there are matters of authenticity of “the whole story” as viewed from the perspective of an imaginative child reader, that simply are not present in the book. In this regard, dumbing down a complex subject, despite understandable pressures to do so, really limits the value of the book, even to adult readers. Since adults buy books, what this reviewer perceives as a mere deficit in style may very well reflect the book’s market value as well as its longevity on the family’s bookshelf or electronic reader.

One last matter: style and format.

In this age of interactive, open-ended media, it might have been worthwhile for the author and illustrator to have considered a reader’s “tell your own story” approach to this book. This certainly is the direction taken by which interactive media and educational materials especially distance learning, open classroom, and home-schooling materials being written for tech-savvy youngsters.

While I am not an uncritical proponent of electronic games, they, too, have come a long way, baby. Perhaps in the near future, authors directing educational materials to children, adolescents and young adults might consider working with formats that present essential, basic information in the same vein that rules of any electronic game are introduced.

Since the individual characteristics of persons on the autistic spectrum are far more varied and rich than those portrayed in stereotypes or mental health diagnostic recipe formulations no matter how articulately personalized, perhaps it might be worthwhile developing media with an interactive, individualizable set of open-ended options allowing reader/participants to come up with their own stories, share their own individual experiences, and thus enable them to connect their own dots within a formally structured but imagination and-memory-enhancing matrix. New knowledge and self-discovery materials and innovative business practices are rapidly replacing shopworn and obsolete manual technology. This may be one reason why a number of reviewers have responded less than favorably to the visual clutter and less-than-well obscured secondary curriculum levels of this combined print/cartoon book.

The verdict:

The book is good, worthwhile, and novel, as far as it goes. I wish it had gone further.

Although I’ve taken this review far afield from the usual focus of a book review, I present it as a reminder to educators, mental health professionals, publishers, authors, and developers of best and promising technologies alike.

It is no longer possible to silo expertise. The age of the cloud and the blogosphere has forever access to knowledge new and old. Fortunately, I am too advanced in age (and weight) to float comfortably on one, or while away my time chattering on the other.

With this review, I hope I’ve raised a few eyebrows while stirring some grey matter. If that is its sole effect, its purpose has been served.

Roger N. Meyer
“…of a different mind”
Disability Representation and
Comprehensive Case Management
Author, Asperger Syndrome Employment Workbook (2000)
Former co-moderator Portland AS Clinical Study Group (2000-2010)
Former co-facilitator Portland AS Partners Group (2000-2010)
http://www.rogernmeyer.com
Founder/facilitator, Portland OR AS Adult Support Group (1998 – present)
http://www.aspdx.org
 

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