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RECOVERY FROM ASPERGER SYNDROME AND OTHER FORMS
OF MILD AUTISM:
A PARENT’S PERSPECTIVE
(Graciela Zimmerman)(©
2005 Graciela Zimmerman and CT FEAT; may be used only with attribution.)
This is the article that I would have wanted to read when I was first
setting out into the autism world, more than ten years ago. It’s written
for my fellow parents, especially those who are new to autism and have a
young child diagnosed with Asperger Syndrome. I am not a professional,
and you should keep that in mind as you weigh the value of my opinions.
The article is divided into the following sections: 1) Conflicting
Information; 2) Contradictory Advice; 3) Research Based Decision-Making;
4) The “Autism is Forever for Everyone” Bias; 5) Realistic Expectations;
6) Follow the Money; 7) Degrees of Impairment and Implications for
Treatment; 8) My Children; 9) Individualizing Treatment Programs; 10)
Treatment for a Young Child With Asperger Syndrome; 11) Traditional
Approaches to Asperger Syndrome Treatment; 12) An Intensive ABA Approach
to Asperger Syndrome Treatment; 13) Learning Opportunities in the Public
School Setting; 14) Relevance of Our Story; 15) Curriculum and
Resources; 16) Books for Teaching; 17) General Books on Asperger
Syndrome; 18) Support; 19) In Retrospect.
Conflicting Information
In the early 1990s, when my five-year-old child was diagnosed with
Asperger Syndrome (AS), there was comparatively little information
available about treatment. In the intervening years, there has been a
veritable explosion of books on AS.
Though I’m glad to see such increased interest in the topic, I would
find it very overwhelming, as a parent of a newly diagnosed child today,
to sort through all these dozens of books and their often conflicting
advice.
Oddly enough, even in this “information overload” environment, parents
of a young child with AS are unlikely to find encouragement for pursuing
the treatment most likely to do the most good: intensive treatment based
on applied behavior analysis (ABA).
Contradictory Advice
For a host of complex reasons, having more to do with politics than
evidence, parents usually are advised that intensive ABA treatment is
inappropriate for young children with AS and other forms of mild autism.
Parents are also told that it is unrealistic to think that any
intervention can enable such children to overcome their disability and
learn to function in the normal range.
This advice contradicts common sense, given the research demonstrating
that some children with more severe impairments (i.e. meeting criteria
for autistic disorder) have completely recovered from autism with
intensive behavioral treatment begun at an early age (three to
four-years-old).
Intensive treatment yields the best results when begun at the earliest
possible age. But the window of opportunity may remain open longer for a
child who has fewer and milder deficits. While children with AS often
aren’t diagnosed until they are in elementary school, a growing number
are being identified as young as four or five. In my experience, many
“late-starting” five and six-year-olds with AS prove just as responsive
to intensive treatment as the younger “best outcome” children in the
research studies.
Research Based Decision-Making
The first peer-reviewed academic study demonstrating that some children
lost their autistic symptoms as a result of intensive behavioral
treatment appeared in 1987. But these findings didn’t attract a lot of
attention, outside of academic circles, until the publication seven
years later of a follow-up study corroborating its results. These and
other related materials can be found elsewhere in this web site under
the heading “Articles, Reports and Opinion Pieces Describing ABA and the
Research That Supports It.”
Most parents didn’t learn about any of this research until Catherine
Maurice’s Let Me Hear Your Voice: A Family's Triumph Over Autism (1993)
ignited worldwide interest in ABA treatment. This beautifully written
book describes Maurice’s difficult quest to obtain treatment for her two
children, both of whom responded exceptionally well to intensive
behavioral intervention programs.
I might never have learned about the potential value of behavioral
treatment had not a Speech and Language Pathologist (SLP) in our school
system told me about Maurice’s inspiring book. This woman was somewhat
skeptical about the book’s claims and wondered if the children it
described ever really had autism or had indeed “recovered” from it. She
also was dubious about its relevance for treating an “older” child with
AS, since Maurice’s children had been younger and diagnosed with
autistic disorder. Despite these misgivings, she lent me a copy of the
book and I will be forever grateful to her.
None of the other sources to which I had looked for treatment
information at that point – be they diagnosticians, special education
professionals, books, web sites, support groups, autism organizations
etc. - had had a single encouraging word to say about “Lovaas” treatment
(as ABA treatment was usually described at the time).
Though I’m sure it’s a lot easier to obtain this information today, I
worry that too many parents are still being misled about the potential
value of intensive behavioral treatment for young children with AS and
other forms of mild autism. That’s why I’m writing this article.
The “Autism Is Forever For Everyone” Bias
Many people in the autism world dispute the validity of the research
demonstrating that some children receiving early and intensive
behavioral intervention (EIBI) completely lose their autistic symptoms.
They believe that, regardless of the nature of the treatment or the
severity of the symptoms, autism is invariably a lifelong condition.
Some of the most outspoken skeptics are professionals trained in other
competing treatment modalities. But they are not alone in their views.
Certain adults who claim to be autistic (in some cases, having diagnosed
themselves after reading about AS) are also insistent about the supposed
permanency of autism. Some of these “Aspie” adults even claim that it is
“wrong” to intervene in such a way as to enable a young AS child to
develop in a normal manner. Like the deaf parents who oppose cochlear
implants for their deaf children, these adults believe that there exists
a “culture of autism” that my child and yours should remain part of.
Whether or not these adults actually have the same disorder which once
afflicted my children (a claim I find dubious in some cases), I don’t
see how this qualifies them to provide “expert” advice regarding the
treatment of young children. But they do nonetheless.
Most mainstream autism organizations, including those focused on the
needs of the Asperger community, also subscribe to the “autism is
forever” creed. This perspective appears to be rooted in the life
experiences of the parents and professionals who are most active in
these groups.
The most prominent autism organizations tend to be led by the parents of
older children, many of whom have reached adulthood. These children may
never have received intensive behavioral intervention. Or they may not
have been optimally responsive to it. Whatever their personal level of
experience with ABA, these parent leaders may also be concerned that
acknowledging the possibility of “recovery” might undermine efforts to
educate the public about how severely disabling autism usually is.
Many of these organizations provide excellent and invaluable resources.
But you should be aware of how these factors may affect the information
they provide about autism treatment.
Realistic Expectations
Organizations, autism professionals, and school systems are all
concerned that families have “realistic expectations” about their
child’s overall prospects for improvement. But this commendable desire
to protect families from disappointment often leads to excessively low
expectations.
The teachers, therapists and other professionals who work with our
children want their efforts to be beneficial. This often leads to an
overly rosy view of the child’s “progress” and resistance to the idea
that the child could be doing much better with some other kind of
intervention.
Expectations regarding a given child’s potential shouldn’t be dictated
by the diagnosis per se. It should be grounded in that individual
child’s specific strengths and weaknesses, including his or her
responsiveness to intensive intervention, using the best scientifically
validated teaching technologies.
Follow the Money
One of the first and most important lessons you must learn as you begin
your autism journey is this: always take account of the powerful
economic considerations that may color the advice you are getting.
Follow the money.
On the one hand, there are those who want to spend as little as possible
on your child. These would be the early intervention and school systems,
and the staff and consultants they employ. There are many wonderful
people in those systems. But you should be aware of how their
professional and financial interests may vary from your child’s best
interest.
On the other hand there is the ever growing army of service vendors
(e.g. treatment gurus, diagnosticians, authors, private schools, product
purveyors, etc.) and they want you to spend as much money as possible on
their services. The autism business is big business.
In the interest of maintaining their good standing with colleagues (who
may be a source of referrals, speaking engagement opportunities,
promotional book blurbs, etc.) many of these autism professionals have
strong incentives to praise each other’s work indiscriminately.
Since I’m not a professional, and I’m not selling anything, I don’t need
to be concerned about attracting clients or alienating colleagues who
might refer business to me. Unfortunately, these kinds of concerns
inhibit many people from speaking honestly and plainly about autism
treatment.
Degrees of Impairment and Implications for Treatment
Tremendous variation exists among the people diagnosed with “pervasive
developmental disorders” (PDD), as the American Psychiatric Association
classifies them in the fourth edition of its Diagnostic and Statistical
Manual of Mental Disorders (commonly referred to as the DSM-IV).
The severity of symptoms that typically makes “autistic disorder” so
much more disabling than “asperger disorder” (more commonly called
“Asperger Syndrome”) is clearly one difference. But, even within a
single diagnostic classification, one finds a tremendous range of
ability and disability among affected individuals.
Certainly, the “social communication” impairment found across the autism
spectrum, and within all its diagnostic subcategories, is a powerful
common denominator. But a host of other factors peculiar to your
individual child – his particular profile of strengths and weaknesses -
are going to be the most important considerations in deciding how to
best help your child cope with, or possibly even overcome, his
disability.
My Children
My own two children were among the more mildly impaired, with diagnoses
of AS and PDD-NOS (Pervasive Developmental Disorder Not Otherwise
Specified) respectively. With intensive behavioral intervention (ABA)
from an early age, they were able to overcome their disabilities.
By “overcoming their disabilities,” I mean that they receive no special
education of any kind and are capable of forming and sustaining peer
friendships to a “normal” extent. They finished treatment some years ago
and are now happy, successful, socially well- adjusted students in
middle and high school.
My own particular experience probably has the most relevance for parents
of young children like mine who, at the outset of treatment, possessed:
1) some language (even if it did take hundreds of hours of behavioral
therapy to bring it into the normal range); 2) at least average IQs
(even if attentional, behavioral and language issues interfered with
early efforts to measure them); and 3) no other exacerbating
neurological condition.
Their possession of those characteristics, together with their strong
positive response within the first six months or so of treatment, is
consistent with the ABA research demonstrating which children are most
likely to achieve “best outcomes” with early intensive behavioral
intervention (EIBI).
By emphasizing my children’s strengths (found among many children with
AS and PDD-NOS, and some on the milder end of autistic disorder), I
don’t want to minimize their difficulties. To varying degrees, each of
them experienced a whole range of the abnormal behaviors associated with
these disorders, e.g.: 1) profound difficulties with social relatedness
and play; 2) significant language delays and abnormalities, (e.g.,
echolalia, pronoun reversal, disfluency, poor pragmatics); 3)
self-stimulatory physical behaviors (e.g., self-talk, rocking, toe
walking); 4) tremendous distractibility and attentional issues; 5)
perseveration and obsessive interests (e.g., videos, computer games,
dinosaurs, the Titanic); 6) sensory intolerance (e.g., sound, light,
clothing, textures, food); 7) sleep abnormalities; 8) behavioral
excesses (e.g. tantrumming); 8) executive function problems; and 9)
difficulties with self-regulation.
Individualizing Treatment Programs
By its very nature, a behavioral intervention program is focused on the
individual child’s specific behaviors. Though there were commonalities
in my children’s treatment programs, the differences were equally
pronounced. These differences were attributable not only to each child’s
varying strengths and deficits, but also to the fact that they began
treatment at different ages.
My daughter began treatment at the age of three, shortly after being
diagnosed with PDD-NOS. She had much more serious language and
behavioral problems than my son. Her treatment consisted of a
“traditional” intensive (30-40 hours per week) program of individual
behavioral therapy, using the Work in Progress curriculum and supervised
by an Autism Partnership consultant.
Treatment was at home for most of the first six months and eventually
evolved into a home/school mix, with significant preschool time
supported by a highly trained aid. By the time my daughter was
five-years-old, we had moved to a new school system where we did not
disclose her diagnosis or seek services. For a couple of years
thereafter, and without involving the school, we continued to work at
home on building her social skills and resolving some lingering
attentional issues.
My daughter is now in middle school and functioning “normally”- meaning
that she is a reasonably good student and has age appropriate peer
relationships. Most importantly, she is a happy sociable child.
The dramatic progress my daughter was making during her first six months
of ABA treatment prompted me to reconsider the value of the generic
“special education” type intervention that my six-year-old son had been
receiving during the previous year, following his AS diagnosis. That
intervention mostly consisted of “pull-out” time for individual
instruction with a special education teacher, together with some speech
and occupational therapy.
Treatment for a Young Child with Asperger Syndrome
Like most parents, I’d been advised that ABA was “inappropriate” or
“unnecessary” or “too intense” for a child with AS. The more I
understood about how ABA actually works, the clearer it became that my
more mildly impaired son could benefit to the same extent as my
daughter.
Indeed, if I’d been able to start my son’s treatment earlier – at the
age of three, when he first demonstrated noticeable signs of atypical
development – it would have been even quicker and easier to get him on
to a normal developmental track. But it would take almost 18 months, and
consults with three different professionals, before I finally found
someone who could tell me exactly what was wrong with his development.
And even this individual, an excellent autism diagnostician, wasn’t well
informed about the most effective treatment strategies. Unfortunately,
it is too commonly the case that diagnosticians, including some of the
best, don’t keep abreast with treatment information. This can be very
problematic, since school systems rely to a great extent on the
diagnostician’s recommendations.
Even those diagnosticians and school systems familiar with intensive ABA
treatment tend to think that five or six-year-old children are too “old”
to benefit from it. That’s because the long-term outcome research on
intensive ABA treatment focused on three and four-year olds, with best
outcomes associated with the earliest possible treatment.
But in my experience, and that of other families I know, a child with
mild autism (e.g., Asperger Syndrome or PDD-NOS) can start treatment
later (almost six-years-old, in our case) and still achieve best
outcomes – meaning total remediation of the disability. With the
increased awareness in recent years, more and more Asperger children are
being identified at these young ages.
The main challenge was to adapt the traditional ABA curriculum to a
child who was older and in school full time. An even greater difficulty
was to convince the school staff (all of whom were extremely competent,
nice, and well-intentioned) that their existing approach to educating
such children was not the appropriate one for my child.
Traditional Approaches to AS Treatment
Unfortunately, my school’s staff had been very influenced by the kind of
thinking that characterizes treatment approaches associated with speech
and language professionals, especially the prominent speech and language
pathologist (SLP) Barry Prizant and his colleague, Diane Twachtman-Cullen.
Prizant is a prolific writer and frequent lecturer who, some years ago,
earned renown for his research on echolalia. More recently he has
developed his own trademarked intervention package called the SCERT’s
model (Social Communication Emotional Regulation and Transactional
Support).
Twachtman-Cullen is a clinician, author, and school system consultant
who has popularized some of Prizant’s ideas. She describes herself as
particularly expert in Asperger treatment.
Like many autism professionals who have worked with this population for
a long time, both Prizant and Twachtman-Cullen have some good insights
into children with autism, especially their characteristic communication
problems. They also appear to belong to the “autism is forever for
everyone” school of thinking, and the interventions they recommend don’t
contemplate the possibility of “recovery” from the disorder.
No doubt the interventions they recommend have been helpful to many
children. And I don’t presume to describe their views adequately here.
Those who are interested can read their writings or attend one of their
lectures
My school system was very influenced by the principles and techniques
associated with these two professionals. Hence, they didn’t believe it
was possible to remediate the symptoms of autism completely. This
represented a tremendous obstacle for my children who needed a different
kind of treatment model, based on intensive ABA, to make the most
progress.
For example, Twachtman-Cullen counseled schools to build their Asperger
Syndrome intervention programs thematically around the obsessive
interests characteristic of the disorder. Is the child obsessed with
trains or dinosaurs or the Titanic? Then teach math, reading, and
everything else through these narrow interests!
Our ABA program, by contrast, sought to reduce these obsessive behaviors
and substitute more varied and normal ones, that would lay the
foundation for more normal peer play and social learning.
At least when working with young children like mine, it is a singularly
dumb idea to cater to their obsessive interests. But it was an idea
urged upon me time and again by many well-meaning teachers. They
advanced the comforting, but false, idea that supporting my son’s narrow
interests (e.g. dinosaurs or the Titanic) would lead to friendships
(hey, aren’t all kids interested in dinosaurs?) and career opportunities
(paleontologist, of course!).
For example, the lead special education teacher (a wonderful, caring,
dedicated, intelligent woman) once suggested that my son be allowed to
skip recess altogether so that he could spend the time in the library
pursuing his obsessive interests. This teacher worried that the social
challenges of recess might subject him to too much stress
My ABA consultant, on the other hand, viewed the lunch and recess
periods as presenting the most important social learning opportunities
of the day. Of course, taking advantage of those opportunities required
the presence of a highly skilled aid trained to facilitate social
interaction.
While social skills are among the hardest to teach, they are critically
important, due to the “domino effect” they have on all other aspects of
observational learning. But given the effort and expertise required to
teach these skills, many school programs neglect them.
An Intensive ABA Approach to AS Treatment
Intensive ABA intervention with a young child is designed to develop
specific learning capacities that are otherwise absent or deficient in
the autistic brain. Research demonstrates that the younger the “brain,”
the more susceptible it is to being changed in this way. But only very
intensive intervention will achieve maximum results.
Like all intensive ABA families, we strove to create a “wall-to-wall”
therapeutic environment, across both the home and school settings. Even
when we weren’t doing direct therapy (which amounted to about 20 hours
per week, and which took place mostly after school, on the weekends and
during vacation), we were constantly alert for opportunities to
generalize the skills my son was acquiring.
Probably the most critical factor in my son’s success was the school’s
agreement to provide him with a full-time aide throughout most of second
grade. And not just any aide.
Too often, the paraprofessionals assigned to these kinds of duties lack
adequate ABA training and supervision. In our case, the school agreed to
hire the wonderfully talented young woman who had been trained by our
consultant. She had acted as the lead ABA tutor for both of my children
throughout their treatment.
This aide focused primarily on increasing my son’s ability to interact
with, and learn from, his peers. This necessarily involved addressing
attentional and self-regulation issues, as well. She also worked on
developing my son’s ability to organize his work and follow the
classroom teacher’s instructions without any special supports. Perhaps
most importantly, she always supported by son in the lunch and recess
settings.
This aide received supervision from an ABA consultant who had extensive
experience in the specific requirements of mildly impaired children in
this advanced stage of treatment. To complete our good fortune, our son
had an excellent second grade teacher who had the confidence and good
sense to welcome this aid into her classroom
It proved to be a good investment. By the end of third grade, at our
final PPT meeting, my son was ready to exit special education forever
and his file was officially closed. He has never needed any additional
services since then. Today, more than five years later, he is an
academically successful kid who enjoys a normal social life. Most
importantly, he is immensely happier than he was during the years he was
disabled by AS.
Learning Opportunities in the Public School Setting
During the past few years or so, I’ve noticed a trend towards opening
new private schools for Asperger kids. I can well imagine how such an
environment could be an optimal choice for an older child.
But I worry about segregating younger AS children from normally
developing peers at a time when they still have the capacity to learn so
much from them. Many of these private schools recruit students as young
as kindergarten or first grade – a prime time to be learning from normal
peers.
Of course, the social learning opportunities available in the public
school are often squandered due to lack of proper intervention and
support. Too often, school systems don’t grasp the extent to which
teaching social skills is as important as teaching academic skills. Both
sets of skills are necessary for becoming an independent learner
With each passing year, normally developing children become increasingly
dependent on their ability to learn in a group and from each other. For
example, a typical fourth grader is expected to be less reliant on the
teacher, and more reliant on the group, than a third grader. As early as
4th grade, observational and group learning skills become critical for
academic success.
Fourth grade is often cited as the juncture at which many mainstreamed
AS children start falling behind their normal peers. The ever widening
gap often results in their eventual removal from the mainstream setting.
This phenomenon is usually attributed to the AS child’s difficulty with
the increasingly abstract nature of the academic material being taught
at that grade level.
In many cases, this gap is better explained by the failure to teach the
AS child adequate social learning skills. Teaching these skills requires
tremendous intensity and expertise. Neglecting them increases the
likelihood that the AS child will fall behind in the mainstream setting
as he reaches the upper elementary grades.
Relevance of Our Story
Families whose children are significantly older or more impaired may not
find my family’s story all that relevant. I don’t mean to imply any
criticism of the choices other parents have made in their efforts to
help their children. I would regret it terribly if any parent
interpreted this article as a reproach. I know first-hand how difficult
it is to find and implement effective treatment.
Despite the considerable challenges posed by having two children with
such significant disabilities, our family also had many advantages
without which our children probably could not have accomplished as much
as they did. No doubt the most decisive factors were the comparative
mildness of my children’s autism, and the ability to begin intensive
treatment at a young age. Among other important factors were:
1) ABA consultants who had extensive experience working with more mildly
impaired kids, and who understood the complexities involved with
building normal patterns of learning and interaction.
2) Talented therapists. My best and lead therapist stayed with our
family throughout the entire course of treatment.
3) Extra financial resources, from a generous grandparent, which
permitted me to be at home full-time so as to research treatment
possibilities, find a talented consultant who could train me as well as
the aids, and supervise the children's therapy. Those funds also paid
for additional therapy hours beyond what the school was providing.
4) An environment that afforded ample opportunities for social teaching.
We were able to enlist lots of cousins and neighborhood kids in the
social skills training, which constituted such an important part of the
overall program.
5) A very supportive extended family.
Curriculum and Resources
There are a few books I considered essential reading at the time. And
there are new books and videos available now that I’m sure I would have
found helpful. But what matters most is not so much which books you use
but how and what you teach.
Teaching strategies need to be intensive and based on behavior analytic
theory. What you teach must be very individualized and based on a
careful inventory of your child’s specific deficits. Try to find a
knowledgeable ABA professional with experience in the more advanced
levels of autism treatment. They will know the sequence in which skills
should be taught for optimal progress.
I would caution you that not all ABA professionals are autism
specialists. And not all autism specialists are able to treat all kids
on the autism spectrum effectively. For example, many who are skilled at
providing Early and Intensive Behavioral Intervention (EIBI) to
three-year-olds with autistic disorder lack the appropriate experience
to make treatment recommendations for older AS kids.
This is also true for therapists. The same person, who excels at
teaching a nonverbal three-year-old how to sit in a chair or pay
attention, may be clueless when it comes to teaching an AS child how to
make appropriate comments in a social conversation or refrain from
self-stimulatory behaviors.
If you don’t have access to an experienced consultant, there’s still a
great deal you can accomplish on your own, using ABA techniques (taught
through books, videos, conferences, workshops, etc.) and drawing upon
the various curricular materials that are available for purchase.
My own guiding mantra was to observe normally developing children
closely at every opportunity – however painful that sometimes was. These
observations - of infants in the supermarket, toddlers on the
playground, and preschoolers at recess - helped me better understand the
depth of my own children’s deficits and the enormous amount of
“catching-up” that they would need to do.
Time and again, I was struck by the extent to which even the youngest of
these normal children would spontaneously study my face and body
language or seek to engage me by exchanging smiles. What an
extraordinary amount of social learning was going on! It was stressful
to realize how much my own children had missed, beginning as early as
their infancy. But it did motivate me to press hard to catch up with
that always moving target of “normal development.”
Books for Teaching
My own personal favorite is Teaching Individuals With Developmental
Delays: Basic Intervention Techniques (Ivar Lovaas, Pro-Ed, 2003). Its
curriculum addresses only the earliest stages of treatment, so it wasn’t
particularly useful for my children. But I found the book invaluable for
its insights into the various behavior problems associated with autism
spectrum disorders.
Lovaas doesn’t concern himself with the various DSM-IV diagnostic
classifications (e.g. autistic disorder vs. Asperger disorder). Instead,
he views all the autism spectrum disorders as involving “developmental
delays,” the number and severity of which vary across the spectrum. He
describes how behavioral excesses (e.g. self-stimulation,
repetitiveness) and deficits (e.g. poor imitation, motivation,
attention) interfere with the development of normal social and learning
behaviors. I found this a very useful way to look at my children’s
developmental problems.
Also essential for me were A Work in Progress (Leaf and McEachin, 1999)
and Teach Me Language (Freeman and Drake, 1997). The former contains a
curriculum, together with guidance on how to implement it using
behavioral techniques. The latter’s most valuable feature, for us, were
the instructional materials (e.g. exercises and games) for building
social language skills. I’ve never found anything comparable. You’ll
find all three of these books, as well as other worthwhile resources,
extensively reviewed in the “Recommended Reading and Videos” section of
this web site.
After you establish a behavioral foundation, there are tons of other
helpful books to draw upon, both in and out of the ABA world. Many
helpful resources have been developed by special education teachers,
speech and language pathologists (SLPs), and psychologists.
Some examples of these are: 1) the “Skill Streaming” series, especially
Skill Streaming in Early Childhood: New Strategies and Perspectives for
Teaching Prosocial Skills (McGinnis, and Goldstein, revised edition
2003); 2) Teaching Your Child the Language of Social Success (Duke,
Martin, and Nowicki, 1996); and 3) various of the ready-to-use language
and special education books marketed by the LinguiSystems company (www.linguisystems.com).
Though they didn’t exist at the time my children were in treatment, some
of the materials developed by Steven Gutstein for his trademarked
“Relationship Development Intervention” (RDI) program probably would be
useful, especially some of the social skill exercises outlined in his
book Relationship Development Intervention With Young Children (Gutstein
and Sheely, 2002). You don’t need to buy into Gutstein’s theories about
autism, or claims for the comprehensiveness or effectiveness of his
treatment model (both of which I find utterly unconvincing), in order to
make use of his materials.
All of the resources I’ve mentioned can be adapted for use within a
behavior analytic approach – e.g. involving task analysis, systematic
teaching, prompting and generalization techniques, fluency training, and
data-based decision making regarding how and what to teach.
General books on Asperger Syndrome
Most books for parents on the general topic of Asperger Syndrome tend to
be very disappointing when it comes to providing treatment advice for
young children. They may exhaustively detail what your child needs to
learn (e.g. “language,” or “social,” or “attending,” or “organizational”
skills). But they don’t explain how to do it.
If they refer to ABA treatment at all, it’s only in connection with
reducing “problem behaviors” like tantrumming. They fail to recognize
that ABA is as powerful a tool for increasing positive behaviors as it
is for decreasing negative ones. They underestimate, or misunderstand,
the way ABA techniques can be used to teach most everything.
An exception to this is the wonderful OASIS Guide to Asperger Syndrome:
Advice, Support, Insight and Inspiration (Bashe and Kirby, 2nd edition,
2005). The book draws its title from the popular web site: Online
Asperger Syndrome Information and Support (OASIS)
www.aspergersyndrome.org. The site, maintained by the parent authors who
wrote the guide, should be the first port of call for any parent of a
newly diagnosed child.
The OASIS Guide provides a general but comprehensive overview of
diagnostic and treatment issues. There is also an insightful section on
“The Whole Child,” with chapters on “Your Child’s Emotional Life,” “Your
Child in the Social Realm,” “Your Child in School,” and “Growing Up.” In
my view, it is the single most helpful introduction into the fascinating
and challenging world of Asperger Syndrome.
Another excellent overview book, written by a team of prominent
psychologists, is A Parent’s Guide to Asperger Syndrome and High
Functioning Autism: How to Meet the Challenges and Help Your Child
Thrive (Ozonoff, Dawson, McPartland 2002). The first section focuses on
understanding AS and high functioning autism (e.g. diagnosis and
treatment issues), while the second section provides ideas for living
with AS at home, in school, and through the lifespan.
Though it doesn’t deal with Asperger Syndrome specifically, Overcoming
Autism: Finding the Answers, Strategies and Hope That Can Transform a
Child’s Life (Koegel and LaZebnik, 2004) describes how to use behavioral
techniques to improve the symptoms of autism at home and in the
community. Even if you aren’t interested in pursuing an intensive
intervention program, you’ll probably find some helpful ideas that will
enhance your child’s quality of life.
Though it doesn’t contain any treatment information that I consider
particularly useful, psychologist Tony Atwood’s touching Asperger’s
Syndrome: A Guide for Parents and Professionals (1998) is well worth
reading for its uplifting tone and insights into what it feels like to
be a person with AS.
Once you have your treatment program in gear, and have the time or
inclination to learn more about the neurological underpinnings of
Asperger Syndrome, a good choice would be the collection of scholarly
articles found in Asperger Syndrome (Klin, Volkmar, Sparrow, Editors,
2000). The editors are internationally renowned researchers at the Yale
Child Study Center.
Support
Like all the parents of recovered children I know, I’m committed to
protecting my children’s privacy. Consequently, you are unlikely to meet
parents like me at support meetings. We usually aren’t active in autism
organizations either.
But many of us join online forums where we can participate without
revealing our identities. Some of the parents whom I “met” online were
invaluable sources of inspiration and ideas for me. The “Related Links”
section of this web site contains information about some of these
groups, including instructions on how to join them.
In Retrospect
One lesson I learned, in hindsight, is that kids on the autism spectrum
are often much more aware of what’s going on around them than they seem
to be. This only became clear to me some years after my children had
finished treatment, when they would often surprise me with detailed
recollections of happy childhood memories (e.g. pumpkin-picking outings,
hikes, street fairs, festivals, playgrounds, and birthday parties).
At the time these memories were being created, I never would have
predicted that my children had the capacity to notice and understand as
much as they did. Evidently, appearances can be deceiving. My point in
relating this is to emphasize how important it is to provide our
“atypical” children with all the “typical” experiences and pleasures of
childhood.
Of course, being on the receiving end of an intensive behavioral
intervention program is hardly a “typical” childhood experience. But,
ultimately, it may be just the experience that enables your child to
find the most joy in life, both in childhood and beyond.
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