SCHAFER AUTISM REPORT "Healing Autism:
No Finer a Cause on the Planet"
________________________________________________________________
Monday, April 12, 2004 Vol. 8 No. 62


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SPECIAL EDITION:
IN DEFENSE OF BEHAVIORAL TREATMENT FOR AUTISM
Why autism should not be left to fester untreated as some opponents argue.

* Behavioral Flowers for Algernon
By Bobby Newman

* This Taken Seriously By The Court In Canada Is An Outrage
By James A. Mulick, Ph.D.

* Mischaracterizing the “Misbehaviour of Behaviourists”
By Gary Mayerson

* Whose Misbehavior?
By Gina Green, PhD, BCBA

* Who Speaks for Our Children?
By Jennie Ladew-Duncan

* One Small Boy Goes From A Diagnosis Of Autism To Advocating
For Kids Rights To Treatment
By Anthony and Cindy

* Letter from: AnthoNy


IN DEFENSE OF BEHAVIORAL TREATMENT FOR AUTISM
Or should autism be left to fester untreated?


Applied Behavioral Analysis is a proven effective treatment for
autism. Yet, as its popularity has grown amongst parents, teachers and
disability agencies, so has a small, but growing-louder voice of those who
see any treatment for autism as inhumane, especially ABA.
Recently there have been a few public critiques leveled at those who
provide behavioural treatment to children with autism by this “pro-fester”
camp. The title of one piece is, The Misbehaviour Of Behaviourists: Ethical
Challenges to the Autism-ABA Industry, by Michelle Dawson states, “Since the
publication of O. Ivar Lovaas' landmark 1987 study, scientific and legal
attention has been lavished on Applied Behaviour Analysis as an autism
treatment. Dr Lovaas' supporters and opponents, whether principled or
opportunist, have been loud, plentiful, prolific, and well-credentialed. But
when it comes to the test of ethics, to allotting autistics rudimentary
ethical consideration, all sides and factions for and against ABA have
persistently and thoroughly failed.” See
http://www.sentex.net/~nexus23/naa_aba.html for the full text.
Due to these types of serious allegations, and that the courts are
adjudicating on these very issues, we have invited professionals in the
field, and some parents to respond to this article and its arguments.
* * *

Behavioral Flowers for Algernon

By Bobby Newman, who has been active as a board member of autism and
behavior analysis organizations and has served as a board or committee
member of a number of international, national, and regional professional and
scientific groups. Dr. Newman is the author of The Autistic-Spectrum
Disorders and the Ethics of Helping People Revisited.

In an under-appreciated article from the 1970’s, B. F. Skinner (1976)
discussed “The Ethics of Helping People.” Reducing the discussion to its
barest bones, there are three options available to us when considering
people who are lacking particular skills. We can: Take care of the
individual by performing skills for them and protecting them from demands.
We can attempt to ameliorate the skill deficit by teaching the skill
to the individual.
We can attempt to circumvent the problem through adaptive technology.
To put this line of discussion into concrete terms, let us assume that
a child cannot tie his/her shoes. We have three options: We can tie the
shoes for the child.
We can help him/her to learn to tie the shoes.
We can create some kind of technology to eliminate the need for
shoe-tying (e.g., Velcro fastening shoes).
Moving the discussion into a different area, what if a person’s skill
deficits were so diverse that (s)he was unable to independently function in
everyday society? We would be left with two of our three by-now familiar
options: We can provide 24 hour assistance to help the individual through
troubling areas.
We can help him/her to develop the skills to live independently.
Note that I do not include the third option of technological defeat of
the deficits. This is merely a pragmatic alteration. We are now talking
about such a global group of delays that it is not practical at our current
stage of knowledge to use adaptive technology to eliminate the deficits in a
single effort. Such a medical operation, for example, is still largely the
realm of speculative fiction (e.g., Flowers for Algernon). Perhaps one day
this will become an option, medical intervention will become available. To
cite one historical example, this was indeed the case when cochlear implant
technology advanced sufficiently to address some types of auditory
disabilities.
In citing this historical example, we bring ourselves into contact
with a discussion we have not yet considered. What if the individual under
consideration does not want our assistance? Within the deaf subculture, for
example, there are some individuals who believe that deafness is part of
their identity and not a disability. They would not voluntarily undergo the
operations that might restore their hearing. A similar discussion has begun
among some individuals advocating for individuals diagnosed with
autistic-spectrum disorders.
The autistic-spectrum disorders are a group of neurologically-based
syndromes that generally affect an individual’s behavior range, as well as
socialization and communication skills. Within the autistic-spectrum, there
is an enormous functioning range. Without an appreciation of this simple
fact, discussing the autistic-spectrum disorders is impossible. It no more
makes sense to talk about a generic “person diagnosed with autism” than it
makes sense to speak of a generic “religious person.” If I told you that
someone was religious, but gave you no additional information, what would
you know of the person? What would you know of their worship practices?
Their dietary habits? Their holiday celebrations? Naturally, you would
know nothing. Suppose now that I told you that a person was “autistic.”
What do you know? Can the person speak? How fluently and how abstractly?
Does the person have the ability to socially initiate to others, or to
accept initiations? Is the person unduly affected by stimuli that people
within the population at large generally ignore? Does the person exhibit
excessive ritualistic or perseverative behavior? People diagnosed with
autism range from some individuals who may be able to function independently
within society (at least in some areas) right through those who will not
learn to communicate, follow simple requests, tolerate the proximity of
others without self-injury, or even to toilet independently without
intensive help. The discussion of whether or not to attempt to ameliorate
the behavioral excesses and deficits associated with the autistic-spectrum
requires an appreciation of this simple fact. Without intensive
intervention, many individuals diagnosed with autism will eventually wind up
in institutions, unable to even feed or toilet themselves independently. To
avoid providing this intervention, all the while assuring the individual
that we are doing this in his/her own best interests, “respecting dignity
and individuality,” strikes me as a bit hollow.
Suppose you were the individual who, without treatment, was destined
to be standing alone in a corner of an institution, dependent on everyone
around you to take care of even your most basic needs, rocking
perseveratively and eliminating in your clothing, unable to sample what life
has to offer. Would you like someone who could speak and could interact in
the everyday world speaking on your behalf and counseling against treatment?
No, I wouldn’t either.
Reference: Skinner, B. F. (1976). The ethics of helping people. The
Humanist, 36(1), 7-11.





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* * *

This Taken Seriously By The Court In Canada Is An Outrage


Dr Mulick, is currently a Professor in the Departments of Pediatrics
and Psychology at The Ohio State University, Columbus. Professor Mulick
has published over 100 articles, chapters and books in the areas of
learning, developmental psychobiology, behavior analysis, mental retardation
and developmental disabilities, policy analysis, and curriculum development
for advanced and postdoctoral professional education.

This is a reaction [email messaged from Dawson supporters
characterized by hate and personal attacks] that true believers of any
persuasion are likely to do. They are outraged by logic and free debate.
As for Ms. Michelle Dawson's “Misbehavour of Behaviourists”, as the
article itself indicates, she spoke with me several times. She presented
herself to me as an “autistic journalist” (an oxymoron, if taken seriously,
because autistic people would not, by definition, be interested in a career
in communication!) and a self-appointed expert on the “autistic perspective
on life”. People who have had difficulties making a living are not
considered experts in economics. People who have psychiatric disorders are
not considered experts in psychiatry. Why is this? This is because learned
fields are not, we should hope, be based on idiosyncratic experiences and
personal biases alone, but rather on a demonstration of acquired knowledge
and on experience of effectively working in the learned discipline.
Fortunately, I myself rate only a small mention in Ms. Dawson's
posting, despite several conversations with her in which I tried to answer
her questions. [When I have time, I do this with people who have general
inquiries]. She was always interesting and amusing, a good
conversationalist. She showed sensitivity to my point of view and was a very
active listener. When she spoke, she offered clarifications if I had
questions about her meaning. She told me she wanted to enter in to a
Canadian legal case as an expert in autism, based on her own experience as
an affected person and on her perspective as a journalist who had
interviewed professionals who were considered experts in autism. Do you get
the picture? She was behaving like a well trained journalist who had decided
to become a part of the news she was gathering. These are arguably
characteristics of a person with a psychiatric disorder, but that disorder
is not autism or even “on the spectrum”. In popular terms, she impressed me
as a person who had managed to convince someone in her government that she
had a disability, and who lived off that status, but the disability she did
have had perhaps been mislabeled. Malingering comes to mind. Personality
disorder comes to mind. In fact, there appear to be a number of individuals
who travel with the autism community as experts based on their status as
people who had and overcame the disorder, even as they live off that status
in the public eye; even as they behaved in ways that a person with autism
would never choose to do (seek public speaking opportunities, seek
recognition, constantly communicate, etc.). Remember that autism is a
disorder that is characterized by particular ways of behaving.
I was mentioned in the article Dawson posted as having said that
autistic characteristics were a “hilarious accident”. This bit of gratuitous
out-of-context quoting shows her intention was merely to denigrate the
people she interviewed, not to create a helpful debate.
This is shown by the fact that she did quote out of context. I will
tell you the context. She asked me about the cardinal symptoms of autism,
and about the impact of the disorder on affected people. I tried to explain
to her in everyday language that the disorder's defining characteristics
were still in flux.
To illustrate this, I suggested that the people described in Kanner's
original paper shared characteristics he described and that he noticed, but
that the few individuals and their prominent commonalities represented not a
complete picture, but were grouped together by Kanner's individual
perception and the accidental cluster that he thought Made Them All The
Same.
I was not saying that it was a joke to have autism or trivializing
autism, far from it, I was emphasizing that other aspects than those first
emphasized have come and gone as diagnostic markers, defining
characteristics. I think as well that a system of psychiatric classification
based mostly on behavior is a poor way to classify mental illness in general
and the PDDs in particular. We will make progress understanding disorders of
learning and development when we understand and classify based on causes
(not on effects), but unfortunately such a system is not yet a reality and
will not be a reality for several decades (at least that's what I think).
* * *

Mischaracterizing the “Misbehaviour of Behaviourists”

By Gary Mayerson, a special education attorney who practices in the New York
area.

To the extent, if at all, that Michelle Dawson has a genuine
diagnosis on the autism spectrum, it is unfortunate that she has chosen to
denigrate the singular intervention approach (Applied Behavior Analysis
intervention) that (a) enjoys good scientific support (b)has been proven to
remediate the devastating impact of autism, and (c) now has a compelling
history of helping to movie significant percentages of children with autism
spectrum disorders into less restrictive educational settings. It is even
more unfortunate that anyone would take Ms. Dawson seriously.
My law practice, Mayerson & Associates, is dedicated virtually 100%
to the representation of children and adolescents with autism spectrum
disorders. I left a very lucrative law partnership in Manhattan (after 13
years as a partner) in order to start my law practice. I took this risk
because I saw the incredible progress that my own son had (primarily with
ABA interventions), and I wanted to make sure that these kinds of effective
interventions would not be denied to parents who did not have the same kinds
of financial and other resources that I had.
To date, we have represented hundreds of children and adolescents
with autism in more than 25 states. We also have consulted to families
internationally. Like my son, many of our clients have been able to move
into and succeed in mainstream, public school settings, many times with
little or no support. Some of our clients have even been “declassified.”
Most of our other families fall somewhere in the middle, and ABA offers the
support system that the child needs to move into a less restrictive setting.
We have never had a client who recovered significant function after an
autism diagnosis who did NOT at least initially have an intensive ABA
program as part of his or her intervention program. Before ABA, this kind of
result was impossible. Before the advent of ABA programs, the diagnosis of
autism was akin to a death sentence of sorts, with institutionalization the
likely outcome for many, if not most of these children. Initially, ABA
provides very close structure. Later on, as the child learns to learn and
is starting to “generalize” skills, the ABA program moves on to become more
natural, with greater emphasis on incidental teaching, fluency. ABA, when
done correctly, is not simply hours and hours of rote “drills.” This is a
popular misconception. ABA does not constitute child abuse, as Ms. Dawson
charges. The approach is not that different from the approach that a doctor
would take to remediate the effects of a stroke or other neurological
incident. Of course it is hard to re-learn how to walk, talk and eat again.
The autism disorder is a workaholic that does not know how to take a break.
For this reason, only an equally intensive remediation program has a chance
to compete with the devastating impact of autism.
If there is anything that is “unethical” or “immoral” it is Ms.
Dawson promoting the idea that society should simply “accept” children with
autism for what they are and just “go with” the autism. If I am two years
old and I cannot hear, I don't want someone like Ms. Dawson making the
decision for me that I should not have a cochlear implant so that I can
remediate my disability and enter and meaningfully live in the world of
those who can hear. If a parent neglects their child and fails to take
action to remediate their needs, THAT is child abuse. It is love, not child
abuse, when parents do their due diligence and research, and rely upon the
recommendations of reknowned professionals to provide their children with
effective autism treatments.
I thank god that there was ABA treatment available when my son was
first diagnosed. There is no end to my love for my son, but there also is
no end to my belief that autism is a serious and devastating disorder that
will continue to destroy lives and families if not remediated to some
meaningful level. Without ABA, my son would still be rocking,
perseverating, and not speaking. Without ABA, my son would never have been
able to succeed in a mainstream public school setting. Without ABA, my son
would never have been able to learn the communication and social skills that
now help him to navigate play dates and “sleepovers,” little league
baseball, soccer, and Sunday school. At some point, parents of children
with autism will come to terms with the limits of their own child's
remediation track. Not every child with autism will “recover” or become
indistinguishable from typically developed children. All parents of children
with autism love their children fiercely. If only just loving these
children could remediate autism, there would be no children with autism.
Autism is no more a “culture” to be preserved and protected any more than
lung cancer or a brain tumor. Ms. Dawson is entitled to her own opinion,
but she is not entitled to her own facts. Autism is a serious disorder and
disability. Unless properly treated, it literally robs families of their
children, and it robs those same children of the opportunity that they might
have had to be functioning and contributing members of society.
* * *

Whose Misbehavior?

By Gina Green, PhD, BCBA San Diego, CA. Gina Green is a well-known
clinical expert in behavioralism as it is applied for treatment for autism.
Dr. Green co-edited the books Behavioral Intervention for Young Children
with Autism and Making a Difference: Behavioral Intervention for Autism. She
is currently in private practice in San Diego, California.

As evidence of the effectiveness of applied behavior analysis (ABA)
methods for building many important skills in individuals with autism has
mounted, along with efforts to make intensive ABA intervention more widely
available for families who choose it, so has opposition to intensive ABA for
autism grown. Opponents use a variety of tactics to denigrate the approach
and its extensive supporting research. Many of those tactics rely heavily on
personal opinions and beliefs; there is a surprising disregard for facts.
For example, some assert that because ABA is “new” and “experimental,” its
effects and how it works are not well understood.
The facts are that the parent science, the experimental analysis of
behavior, has been around for more than 50 years; the first applications of
positive reinforcement and other behavior analytic methods to skill-building
with children with autism were published in the early 1960s; and hundreds of
empirical demonstrations of the effectiveness of various ABA methods for
enhancing the health, safety, independence, and success of people with
autism of all ages have been published since then.
It is nonetheless probably fair to say that the wide variety of
precise, often intricate ABA techniques and their underlying principles are
indeed not well-understood by those who are not adequately trained in
behavior analysis, just as it is likely the case that most medical
techniques are not truly understood by any except those who are thoroughly
trained in medicine, or most speech and language therapy techniques are not
well-understood except by those who are specifically trained in them. But
ABA techniques and principles are well-understood by well-trained behavior
analysts.
The challenge is to find bona fide behavior analysts, as opposed to
the many individuals who took a course or two on “behavior modification”
years ago, or heard it mentioned in an introductory psychology or special
education class, or read a book, or attended a workshop, or claim to have
worked in a “Lovaas program.” (Contrary to recent assertions that there are
“droves” of behavior analysts involved in the ABA-autism “industry,” the
fact is that genuine behavior analysis is a small – albeit a growing –
discipline).


“Curiously, one tactic that opponents of intensive
ABA for autism have not employed is production of objective
evidence, from either between-group or within-participant
studies, that intensive ABA is ineffective or that another
intervention is comparably or more effective.”


Other opponents of intensive ABA opine that only studies that involve
random assignment of participants to treatment and control groups and
statistical analyses of between-group average scores on standardized tests
constitute scientific research. Since few studies of intensive ABA
intervention for autism have those characteristics, they argue, there really
is little scientific support for ABA. But there is more than one way to do
science. The fact is that behavior analytic research methods – emphasizing
within-participant research designs, repeated direct measurement of
individual behavior over time, demonstrations of direct relations between
interventions and changes in participants, and effects that are clinically
rather than statistically significant – parallel methods that have a
venerated history in the natural sciences. Curiously, one tactic that
opponents of intensive ABA for autism have not employed is production of
objective evidence, from either between-group or within-participant studies,
that intensive ABA is ineffective or that another intervention is comparably
or more effective.
Recently, some opponents of ABA for autism have adopted a different
strategy. They assert that it is “unethical,” even “inhumane,” to provide or
seek intensive ABA intervention for children with autism. Embedded within
some presentations of this position are countless inaccuracies and
statements that are unsupported by facts: for example, assertions that
behavior analysts view autism as incompatible with achievement,
intelligence, and learning (in fact, the opposite is true); implications
that ABA always involves “aversives;” statements that behavior analysts do
not believe that some people on the autism spectrum have high levels of
intelligence and verbal skills; assertions that behavior analysts do not
seek proper consent for treatment and have never dealt with ethical issues
(again, the opposite is true, as even a cursory objective review of the
field would reveal); and too many others to mention here.
But the main tenet of this position seems to be that it is wrong to
try to change anyone in any way; rather all “differences” should somehow be
“accommodated” by society. On the surface it seems difficult to find fault
with that tenet, but follow it to its logical conclusions: All educational
efforts should be banned as unethical, because after all, they seek to
change people.
Likewise, all those who have medical, neurological, developmental, or
behavioral difficulties must be “accommodated” as “different” rather than
having any sort of treatment imposed on them, even if legal consent is
obtained (that is, it’s not just intensive ABA treatment for autism that is
“inhumane” by this logic, but all treatments). Society should accept
behaviors that are now considered illegal because they are merely
expressions of “differences.” And so on.
If it is true, as some have claimed, that there are scores of adult
“autistics” (their word, not mine) who are doing just fine without any
intervention whatsoever, that’s terrific. In my opinion, they should remain
free to choose to seek intervention or not, and to seek greater acceptance
by the broader society. But they should not be allowed to say what sorts of
interventions should or should not be available to other people with autism
or their families, any more than individuals who have medical conditions
should be allowed to dictate what others with those conditions can do.
Intensive ABA -- a demonstrably effective intervention for children with
autism when it is competently delivered – should be available for families
who freely choose it. Imposing the “accommodation and support” ideology on
all people with autism and their families would amount to prohibiting those
who want and consent to effective treatment from obtaining it. What could be
more unethical and inhumane?
* * *

Who Speaks for Our Children?

By Jennie Ladew-Duncan, the mother of an autistic son, who lives in
Roslindale, MA.

Nearly seventeen years ago my only son was born with all five fingers,
all five toes and a beautiful disposition. We waited his birth with
anticipation, welcomed him in to our lives. His arrival was met with joy and
happy expectation! At first he developed well; then hit the first plateau,
made nice strides and fell back, out of step, straggling behind. Over the
years he has continued to take two steps back, one step forward, a dance
that we weren't familiar with. Clearly my son had a choreography all his
own. Isaac was diagnosed with autism at age three and a half, and we learned
to dance along.
However, living with a child with significant autism is not just about
dancing. His father and I have done our best to balance his needs and ours.
We have often felt as if we're spinning out of control. We can only imagine
how he feels. We've done our best to provide him with a safe haven when he
is overwhelmed by the every day world.


“Unless you have assumed responsibility for such
a child or children with autism and have not only had
to judge what's best for your beloved son or daughter,
but juggle a marriage, siblings, careers, being a friend
and a family member, then you do not represent these children.”


Life is a painful process. We can't always ignore this reality.
Helping our children with autism is about teaching them about life, coping
and managing more independently, with confidence. Without adequate
treatment, assistance and funding Isaac's life would more accurately
resemble a hapless dancer in a “mosh pit” instead of a graceful, strong,
capable young man who owns the stage.
There are people who hastily judge the advocacy and efforts of
parents. Some “self diagnosed” person's with autism claim to represent a
united front. They say they speak for the children with autism. They protest
and object to “changing” the child. They claim providing individualized
programming based on ABA is wrong.
I’m left reeling. How dare they make assumptions about our intentions!
It is beyond me.
Unless you have assumed responsibility for such a child or children
with autism and have not only had to judge what's best for your beloved son
or daughter, but juggle a marriage, siblings, careers, being a friend and a
family member then you do not represent these children.
To allow a child to remain ill at ease with the world, isolated from
his or her family, to deny that young person every opportunity would be
criminal. In any other case neglecting a child's needs would be considered
irresponsible, even illegal.
Parents using Applied Behavior Analysis and other approved, research
based interventions hope to remediate and restore skills. These mothers and
fathers are often some of the most invested, dedicated parents I have ever
known. I would never presume to know what is best for each individual, but
surely assisting a young person to better cope and communicate is a true
gift.
Every time a child can make a safe choice and make a friend or to
decide they'd like to be alone, to constructively do so, to enjoy their
food, to converse, celebrate holidays, travel, participate without
discomfort, etc., we have done our duty as a parent. To love does not mean
to necessarily do what is easy. To love means to guide, facilitate, assist,
comfort, aid and protect.
Loving somebody with autism is to love somebody who presents numerous
challenges. It means remaining available, open minded and appreciative every
single day.
I appreciate every effort my son has ever made. I appreciate every
effort he will ever make. I admire him, and I think he is a brave and
beautiful soul. This does not mean I believe I should let him remain
significantly impaired, or that it's alright for him to struggle under the
mantle of autism all his days.
It is of great sorrow to me that he was the beneficiary of such poor
early intervention and that intensive behavioral intervention came so late.
But, he has benefited and in spite of the long dry spell, he is better
off now than he would have been left alone. Better off compared to how he
was when he received a special education that did not address his needs, but
accepted his label as if it were a definition of who he was and all he ever
would be. My son is not autism. He is a lovely young man. Sadly he will be
handicapped for the rest of his life. To accept the child is not the same as
accepting the autism. Apathy is not appropriate. Action is! It is up to me,
his mother to help ease his distress, to carry some of his burden! And it is
up to me to push and prod him on his way, because growing up his hard. It is
all the harder when the child finds so many daily activities difficult.
We need assistance from our governments. Parents can not do this job
alone. But we must be allowed to be families, and to assume our
responsibility with the respect and regard we deserve. To assume that anyone
else can know our situation and how best to address our child's strengths
and deficits is demeaning.
I salute the many people who work on behalf of our children, who apply
the best science, who are warm, honest and who commit themselves and their
careers to helping us help our loved ones.
I do not understand why any organization or agency does not understand
that time is of the essence for optimum progress, but at the same time
refuses to recognize that we all learn every single day, so that none of us
make the mistake of limiting the intervention our loved ones so richly
deserve.
We do not stagnate and stop learning. There are subjects and tasks I
find daunting, and still I try. I would hope I will continue to support my
son in spite of how daunting it may be. I continue to hope we will be open
to how far our children can go with intensive behavioral intervention at all
stages of their development.
Not every outcome is the same, but every child who has the opportunity
to receive the most appropriate services will benefit. To deny the children
their best chance is to essentially promise them a life of dependency and
deprivation. Surely they deserve more? Jennie Ladew-Dunca
N



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* * *

One Small Boy Goes From A Diagnosis Of Autism To Advocating For Kids Rights
To Treatment

By Anthony and Cindy F.

This is the story of my son who is one of the child plaintiffs in the
Wynberg vs. Ontario lawsuit. It’s about his journey with autism and his
progress with ABA treatment. His journey takes him from being a child who
was completely disconnected and unaware of his surroundings to a small boy
on a mission to ensure other children with autism have the same chance to
get well with treatment just like he is doing.
At the time of his diagnosis when he was three the psychological
assessment placed him developmentally at a one year two month level with
essentially no speech, today he is nine and is charging into the world of
advocacy to tell the people in charge that he still needs his therapists and
so do his friends. He wrote a letter to the government and testified in
court because he wanted to speak for himself, he hoped that if they listened
to a kid who has been in treatment and has gotten better that they’d
understand that they just can’t take away their teachers when they turn six…
He said to me, “I still had a lot of autism when I was six, if I lost my
teachers then I would still have a lot of autism to deal with… that’s mean
of them Mom! They just can’t do that to kids, I have to tell them. If I
talk to them they will have to see and then they’ll fix it”.
To share what lead to him writing his letter and later wanting to
testify … He has been in a home-based ABA program since he was 3-1/2. When
he entered kindergarten he was extraordinarily fortunate to have a principal
that believed in him and supported his acquired learning style and allowed
one of his ABA therapists to shadow him in the classroom fulltime. In grade
one with the school boards approval this continued. On entering grade 2 at
the age of 8, because he had received appropriate support he no longer
needed the fulltime support in class anymore, though we continued to work
within his home ABA program to fill the gaps in his social skills. One of
his friends was a little boy that had lost funding for treatment on his
sixth birthday and he didn’t think it was right that he might lose his
teachers (therapists) because his Mom couldn’t afford it on her own anymore.
He said, “The government is bad to do that to a kid and it just isn’t fair”.
I told him the government wasn’t bad, but they had made some bad
choices. He wanted to know what he could do, I suggested he write them a
letter and tell them what he had to say. I didn’t seriously think anything
would actually come of it as he sauntered off to watch T.V. Fifteen minutes
later… he shouts up the stairs “Mom, how do you spell government?”
That was the beginning of his advocacy, here was a child who once
needed advocating for and he was now taking it upon himself to speak for
himself, his friends and other kids with autism.
Dear Goverment, I do not Like you'r rules. Because if children only
get help untill there six years old is not fair because if I had teachers
untill I was six I would of had lot's of Austum to deal with for the rest of
my Life but because I'm nine now and I still have teachers. Now Iv'e lost
most of it but I still have some left ANd I don't want outher kids to have
porBlems with it Like my firend Steven. You will Spoil CanaDa if you go on
Like this. If you don't follow this Letter I will get all the Parents I can
to try and Stop You with my firends and me too. The BaD goverment should not
get any more money untill they use it properly. What use is Canada if the
government are'nt being fair to the people. All Canadins exept you are you'r
ravils because You are doing this to us.


--------------------------------------

from: ANthoNy Not long after he wanted to talk to the judge. The
government hadn’t fixed it once they read his letter, he knew the judge
would decide and he wanted to tell her that it wasn’t fair that she needed
to tell the government they couldn’t take the kids teachers away anymore.
These are my notes from his testimony, written later that night so I’
ve missed some of what he said.
10:00 a.m. June 4, 2003 Before court began he was given a tour of the
courtroom and given the opportunity to sit in the witness chair and test the
microphone. Our lawyer, David Corbett then took Anthony around and
introduced him to all the lawyers and he shook everyone's hand.
The judge then called all the lawyers out to speak with her before
court was in session. I do not know what was said in that 2 minutes, though
I will venture a guess that she wanted to be sure that everyone was clear to
handle the child witness with care and sensitivity.
Anthony was called to the witness stand, he walked up to the chair
with purpose and a mission, and he was not at all worried or nervous.
Justice Kiteley started by talking to him and asked him his name, age,
where he goes to school, what grade he is in, his teachers name, does he
like school and if he had any best friends? She was clearly trying to put
him at ease. He did a great job of responding to all the questions in a
loud clear voice; he especially liked having his own microphone, which he
made sure he used.
Justice Kiteley then moved on and asked him if he new what it meant to
tell a lie? Which he gave her an example of telling the truth, she asked if
he could give an example of a lie, which he readily supplied. She then
asked him if he knew what it meant to promise to tell the truth. He said,
“That's when you make a promise to God to tell the truth”.
Justice Kiteley finished by asking him if he knew what would happen if
he didn't tell the truth, to which he responded, “That would be wrong and
breaking a promise”. She was looking for “That could get me in trouble”; so
very kindly she asked him if he thought he would be punished if he lied. He
looked at her and said, “Yes I think I coooould”. With that she was done
and allowed our lawyer to talk with him.
David Corbett was very animated with him and asked him about his
autism, to which he replied by stretching his arms out really wide, “I used
to have a lot of autism now I just have a little (he brought his hands close
together to show a little), but I want to have none (to which he dropped his
hands down to his side and told them that dropping his hands meant zero).
David asked him about a letter he had written and gave him a copy of it.
David asked him if this was his letter, he said “Yes, and I'm working on
making my printing better!” David asked him if he had given his letter to
the government, he replied “Yes, I took it to the government that lives
close to our house”.
David then asked him if he would please read his letter for the court,
which he did with great pride.
David then thanked him and told him it was a great letter! David
asked him if he had worked hard himself, and he said “I worked very hard,
though Mom says that I got rid of the autism myself by working hard, I
needed my tutors they helped me a lot, I wouldn't have been able to get rid
of most of it without my tutors”. He continued, “It takes a long time to
get rid of it, it just doesn’t happen quickly, it's not fair to take the
teachers away just because they are six”.
Both the Deskin's lawyers and the Attorney General declined to ask him
any further questions.
Justice Kiteley, then acknowledging his desire to hand deliver his own
letter to the Judge asked him to personally give her his letter, that it was
an important piece of evidence. He proudly put the three papers back in
order and handed them over to the judge.
If nothing else comes of this trial, I will forever stand in awe of
Justice Kiteley for taking such exceptional care to ensure that this child's
well being was protected before she would even consent to allow his
testimony and then the compassion and respect she extended him in the
courtroom today was immeasurable.
I never doubted his ability to speak out and stand up for himself; my
only concern was questions that might have been directed at him from the
crown that might have been a little intrusive and made him uncomfortable,
then again knowing my son he would have given it to them both barrels
loaded. The gift of tenderness and respect that both Justice Kiteley and
David Corbett extended him today was a Mom's dream come true! As we were
leaving the courthouse, he told us he was not happy that the other guys
(Attorney General) had not asked him any questions, he announced “I still
had a lot of things to tell them”.
Need I say that his self-esteem topped the charts today!


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