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This book comes complete with a
resource list, bibliography, index, and a reading list, and is hailed on the
cover as an indispensable book for parents, teachers, professionals.
Apart from some glaring errors,
such as referring to Luvox as clomipramine (which is Anafranil actually) under
the heading SSRIs (page 55- Luvox is actually fluvoxamine), the book is a
carefully written exposition of what the authors have come to accept and
acknowledge as the trials and tribulations of the Asperger's kid, and his/her
family, mostly his.
Not that the book is without some
really gushy philosophies, really hippie stuff about celebrating the uniqueness
of the child with Asperger Syndrome, when most parents are stuck with a more
real, although Gothic and miserable view about how one values and celebrates
the aloof uniqueness with social disasters all round that often characterizes
such children. However, the need to approach such disasters in the birth and
development with a more positive view is one which few would deny is valuable,
and this is what the authors set out to do: take a positive view while
acknowledging the seriousness and level of commitment of such parenting tasks.
Again, one is not treating the
impairment, whatever the opening chapters might describe in the organic
pathways involved, but rather the social emotional difficulties that flow from
such impairment, and the management of the disability that results. The
emphasis here is on the family and the community as resources for the child.
This is a good point of departure
for most parents, faced with the cost of ABA approaches and the time and money
invested, as the only real treatment in the evidence base, and with little idea
as to what might go wrong in the child's development up to the point of
Here, the idea is to target each
aspect and thoroughly work at it until the child 'gets it'. Of course, people
of my age will say that kids are cruel, and the child is unlikely to receive
more than short shrift from peers, who will rapidly get it that Johnny is
weird, but today, we have to admit, kids are more exposed to the previously
shunned and hidden 'detritus' of childhood society, and kids with syndromes
related to developmental delay or failure are happily better understood,
tolerated, and in many cases, more supported in mainstream life until the
levels of prejudice have waned somewhat.
Still, Geek syndrome, as my kids
and their friends refer to it, is unpleasant, and although at the high end of
the autistic spectrum of developmental disorders, this may auger well for
success in later, limited or rather focused pursuits, but still, the condition
will complicate social interactions. Home and workplace, the two psychosocial
arenas, are seldom enhanced in the way most of us would want, namely, managing
interactions with others.
To this end the authors spend a lot
of time addressing how parents can enhance the child's capacity to correctly
interpret and understand, for instance, metaphors, and not be literal or
concrete in their interpretation.
For Asperger's-labeled kids, like
any child in the complex social interaction conundrum of the playground, life
is confusing if knowledge is not internalized and utilized. So telling the
child, "you can argue till the cow's come home", might just get the
kid doing just that, convinced that the absence of bovine arrivals indicates the
permission to keep on going ad infinitum, when the parent hoped they would see
the futility of doing so. Each and every such hiatus needs to be dealt with,
and in reality, celebrating the difference of your child in this way can
conceivably bring a parent-social instructor to their knees with despair. The
book is there to deal with caregiver burnout, amongst other things, by
emphasizing the need for accurate, helpful, support and advice, from diagnosis
through to long-term treatment.
The book is structured into two
parts: Part one is detailed for an understanding of the condition, what it
looks like, what is going on inside the brain, obtaining and then adjusting to
a diagnosis, and how it feels to be on the inside of the child's emotions and
feelings in society, setting early the tone for the book, making the child and
society inclusive of each other.
Part two, on Asperger's and your
child, examines the child as an individual in the family, and then integration
problems in the community are dealt with, then the school context more
specifically. Communication and social issues, obviously crucial, come next and
adolescence, regarded as a critical period given it is fairly circumscribed,
and of course, in terms of individuation, mating, maturity, and so on, so important
and busy is focused on quite substantially. The world beyond, the adult world,
is last with a Q&A section as noted above, with all the readings,
references and a comprehensive index.
It's hard to judge such a book,
since it's based on observations and records these faithfully, and uses a lot
of common sense, rather than too much science, as befits a book for parents and
siblings. Science however, is referred to, but little detail is given to
preserve the flow of the book and its lay appeal
Statements like, 'they are less
likely to marry than others', are not as comforting as many others, and quietly
dispel the earlier pithy comments about how one is joyously to celebrate the
fact that our child is marching to the beat of a very different drummer. After
all, warts and all, we love our children, sometimes less, sometimes more, but
never not at all, no matter what they do: but others are freer to ignore them,
or worse be repelled by their oddness and this will bring pain to all.
On the other hand, and in the
sometime value neutral sometimes more positive tone of this tome, human beings
do often choose partners who are not mainstream, interpreting all kinds of
weirdness as a strength, or an attractive difference which makes for a match,
it takes all types to make a healthy society.
When the Asperger's kid violates
the norm, it is clear the author's message is to regard this as not fixed in
dinosaur prints, but amenable to melioration, to be corrected and taught until
the rule, this rule for this circumstance is understood, and one does not need
to wait for the cows. The condition is thus seen as mutable, subject to
modification, and while celebrating the difference, the uniqueness of this kid,
one tries then repeatedly to induce a rule driven understanding that in this
place, in this time, a skill can be acquired which will deal with the other,
like learning a new language. How the child learns to apply this at the prepotent
place, is less clear. These "lousy jugglers" may struggle to apply
what they have learned, hence the need for sustained practice.
There are few aspects of life
neglected, if any, in this book. The authors project a calm approach, with some
serious undertones, to a vexing problem. Behind all of this we see a tired,
dispirited parent, possibly finding it hard to juggle time and work and home
and other children, with a uniquely obsessive child, a sponge absorbing their
energy. One of my clients, widowed, has three sons, all with the syndrome, all
demanding extensive input, in a country where there is no state support, and
she cannot afford private help. I have sent her the book.
Of course, no book stands alone and
sufficient, parents need their own family and peer and professional support,
but the book is likely to rapidly become dog-eared, as mine is, as one hunts to
and fro for what they said about this and that.
The Q&A section is helpful, but
they should expand on it, as there is so much more. The list of resources is
of course less valuable outside of the States, but each has a website, and this
is the era of cyberspace.
There is nothing to compare this
book with, it stands head and shoulders above most, mainly because its approach
is to constantly talk to the parents about the practical, the what and how to,
when to, without preaching an approach, too much science, or becoming
esoteric. Priced at around US$15 it's likely to sell well enough, and is
recommended for all involved either personally or professionally with the
focused potential that is the Asperger Syndrome.
© 2005 Roy Sugarman
Roy Sugarman Ph.D., Conjoint Senior Lecturer in
Psychiatry, University of New South Wales, Consultant Clinical Neuropsychologist,
Professional Opinions (Sydney) & Rose Park Psychology (Adelaide)