SCHAFER AUTISM REPORT "Healing Autism:
No Finer a Cause on the Planet"

________________________________________________________________
September 30, 3003 CALENDAR LISTING: EVENTS@...

CARE
* WSJ: Lauded School for Autism Draws Charges of Abuse
* Teacher Facing Abuse Charges Cops: 'Physical Assault' on 2 ASD Kids
* How A Combination Of Faith & Science Saved My Son From Autism:
Colin’s Story

RESEARCH
* Language Dysfunction In Epileptic Conditions
* Defining Broader Phenotype Of Autism: Genetic, Brain, & Behavioral
* Converging Evidence For Brain Stem Injury In Autism.

FUNDRAISING
* M.I.N.D. Institute Grand Opening & Walk for Hope
* Autism Groups Join Parents for Full-Page Advertisement in the
Washington Post

COMMENTARY
* More From Dr. Frank Marone on Science


CARE

WSJ: Lauded School for Autism Draws Charges of Abuse

[By David Armstrong in The Wall Street Journal. Thanks to Paulettec.]
http://online.wsj.com/article/0,,SB1033338104993916233.djm,00.html

Randolph, Mass. -- During a weekend visit home in early July 2000,
Scott Tedeman took off his shirt to get ready to shower. His father, John,
immediately saw bloody abrasions on his son's back. John Tedeman says Scott,
then 18, had similar injuries on his forehead and elbow, and looked as if he
had been on the "losing end of a vicious fight."
A state and local police investigation determined that an instructor
at Scott's school had dragged Scott by the ankles across rough institutional
carpeting when he balked at repeatedly making his bed as part of a drill,
according to a police report. The instructor was charged with assault and
battery on a disabled person but returned to his native Japan before he
could stand trial.
Scott Tedeman is autistic. The school he attended, Boston Higashi, is
known and widely respected world-wide for treating a disorder that afflicts
as many as 1.5 million Americans and has no known cause or cure. But Boston
Higashi's success comes amid a number of complaints that the school's
treatment practices have led to abuse. Since 1995, police and various
Massachusetts agencies have received at least 17 abuse complaints against
school staff.
Boston Higashi is one of several autism-treatment centers to face
allegations of abuse recently. Last month, a Pennsylvania woman claimed that
her autistic son died at a Bancroft Neurohealth Inc. facility in New Jersey
after his immune system was weakened through excessive use of arm restraints
and overmedication. The Camden County Prosecutor's Office is investigating
the case, a spokesman says. A spokesman for Bancroft Neurohealth denies the
family's charge. Also last month, the chairwoman of a South Carolina
autism-treatment facility quit, saying the facility failed to investigate
complaints of abuse. The facility, the Babcock Center Inc., has denied her
accusations.

Array of Therapies
Autism comprises a spectrum of mystifying developmental deficits,
often including obsessiveness, profound withdrawal, self-abuse and striking
out at others. Diagnoses of autism have risen nearly threefold in the past
decade, and an increasing number of families -- forced to choose from a
bewildering array of therapies -- are in an often-desperate search for help.
Some treatments seem bizarre or even cruel, such as the use of restraints
and electric shocks. A current fad calls for feeding autistic children a
diet consisting solely of wild game.
The Higashi approach, which a Japanese elementary-school teacher
developed in the 1960s, shuns medication and restraining devices. It
emphasizes repetition of tasks, strict schedules and intense physical
exercise.
In recent years, doctors, educators and researchers have lauded the
Higashi philosophy as pioneering and humane. At Boston Higashi, students
have been trained to curb their dangerous behavior, sit attentively in class
and even perform in a jazz band. There are now five Higashi schools -- in
the U.S., Japan, South Korea, Uruguay and England -- and elements of the
approach have been adopted elsewhere. Boston Higashi, which enrolled 143
students from around the world this year, turned away dozens of applicants.
But two separate incidents on July 7 resulted in the school firing two
instructors and in pending police charges against one of them. Randolph
Police Det. James Hayward said the instructor who will be criminally charged
was caught on a school surveillance tape pulling a student by the hair on
three occasions for five to six seconds each time. The second incident
involved an instructor forcing a student to do push-ups for inappropriate
behavior, in violation of school policy. Mr. Hayward said there were several
instructors in the room when the student was made to do push-ups and none
appeared "shocked," leading him to believe it was a common practice. He said
he didn't view the push-up incident as a criminal matter. The school
reported the incidents after a staff person saw them on the surveillance
tape.
Another teacher was charged with assault last year for punching a
student in the stomach and for beating another student with a hairbrush. The
teacher was found not guilty but was fired after an internal school
investigation concluded she had abused at least one of the students. Two
years ago, still another teacher, Masataka Kunihiro, was charged with
assault and battery on a disabled person for allegedly dragging Scott
Tedeman by his ankles, leaving wounds on the student's back. Mr. Kunihiro
resigned under pressure three months after the incident and returned to
Japan. Scott's parents are suing Boston Higashi, which denies wrongdoing.
Mr. Kunihiro couldn't be reached for comment.
Robert Fantasia, director of Boston Higashi, says "cases of abuse have
been isolated" in the school's 15 years of operation, during which it has
educated 350 students. "In almost all of the cases," he says, "the school
itself has been the one to report the problem to the proper authorities and
to initiate disciplinary and corrective procedures." The school conducts
thorough background checks on employees, he says, but "can never guarantee
that a human being won't falter under the best of circumstances." He says
the school is safe for students because the few staff members who have been
abusive were fired and no instructor "has injured a student twice."
Mr. Fantasia, 60 years old, says the school "balances the highest
expectations for students to reach their full potential" with "an
environment of caring and love" and that students "are absolutely safe"
there.

Passionate Defenders
Many parents remain passionate defenders of Boston Higashi. Miriam
Hurwitz of Brooklyn, N.Y., says the school is "superior to anything in the
entire world." Her 19-year-old daughter, Sarah, was struck on the hand, arms
and head with a brush and punched twice in the stomach by a Boston Higashi
teacher in May 2001, according to the Disabled Persons Protection
Commission, which investigated after two Boston Higashi staff members
reported the abuse to the administration. Mrs. Hurwitz says she found the
incident "very worrisome" but says it was the fault of one bad employee and
doesn't reflect a systemic problem. She says Sarah, who has been a Boston
Higashi student for 10 years, no longer needs tranquilizers to sleep and can
go for walks without throwing tantrums.
Jean Bowden of Barnstable, Mass., credits Boston Higashi with
producing a dramatic improvement in her 15-year-old daughter, Abbie, who she
says had been pinned face-down to the floor while in a public-school
program. Boston Higashi "saved her life," Mrs. Bowden says.
Virtually all parents interviewed for this article said they were
unaware of most of the complaints of abuse at Boston Higashi. The school
says confidentiality laws barred it from disclosing complaints to any
parents other than those of the children directly involved, although Boston
Higashi sent a letter in August to all parents notifying them of the
Tedemans' lawsuit and asking for their support. The school says no one has
pulled out their children as a result of the disclosure.
The nonprofit school is situated on a 55-acre suburban campus outside
Boston. It charges $100,000 a year for residential students. Federal law
requires that public-school districts pay the full cost of educating a
handicapped child if they don't offer an adequate program.
Boston Higashi was first investigated for claims of abuse shortly
after its 1987 founding, when the school's first special-education director
quit after a month on the job, saying that some employees were abusive. An
investigation by the state Department of Social Services found no abuse. In
1989, the agency conducted another investigation, this time into allegations
from students that staffers had punched them and hit them with hairbrushes
and sticks, and from parents that they had been denied visits and that food
was withheld from their children for misbehavior. The agency said its
investigators "concluded that there was reasonable cause to believe" that
five children had been abused at the school.
+Article continues at: http://www.angelfire.com/on/FEATNews/wsjtextl.htm


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* * *

Teacher Facing Abuse Charges Cops: 'Physical Assault' on 2 ASD Kids
Came during summer school

[By Hilda Munoz Journal., New Jersey.]
http://www.nj.com/news/jjournal/index.ssf?/base/news-0/1033121448259980.xml

A Bayonne teacher, accused of physically assaulting two children in
her summer school classroom, was recently arrested and forced to resign by
district officials.
And some parents have already taken steps to sue the district,
according to a school attorney.
Dina Lonky, 29, of Seaview Court, a full-time teacher in the autistic
program at Woodrow Wilson Community School on West 56th Street, was charged
Sept. 13 with child abuse and endangering the welfare of a child, police
said.
Upon learning that Lonky was "conducting herself inappropriately," the
Bayonne Board of Education decided not to allow her to return to school this
year, said Superintendent of Schools Patricia McGeehan.
While the incidents occurred during summer school, Lonky had also been
employed by the district during the regular school year.
"The teacher was advised that the administration was going to request
that the board terminate her employment," she said. "The teacher opted to
resign rather than face termination proceedings."
School officials would not release a phone number for Lonky and she
was not listed.
The abuse, involving two 6-year-old boys in the class, allegedly
occurred on separate occasions between July and August of this year,
according to Bayonne Police Sgt. Brian P. Bracken.
Bracken said he could not specify the type of abuse inflicted on the
victims, whose names were not released because of their age. However, he did
say that she hurt the boys while trying to curb their bad behavior.
"She graduated beyond the point of just correcting the children," he
said.
"It was a physical assault."
Bracken said parents first reported the abuse Aug. 30, at which point
police interviewed classroom and school employees who confirmed the
allegations.
He said the investigation was drawn out because the children in
Lonky's classroom are autistic and have difficulty describing what they
witnessed.
A parent, who asked to remain anonymous, told The Jersey Journal she
now understands why her 6-year-old son, who was in Lonky's class, refused to
go to school during the summer.
"(My son) would cry not to go to school, he didn't want to see Dina,"
she said, adding that she pulled her son from the program as soon as she
learned of Lonky's arrest.
While questioning school employees, investigators learned there are
other children who Lonky may have treated improperly, but her actions in
those instances may not have been criminal, said Bracken.
The New Jersey Division of Youth and Family Services is investigating
those allegations, Bracken said. If DYFS determines there was criminal
behavior in the other incidents, the Police Department will take over those
cases.
According to Ken Hampton, legal counsel for the Bayonne school
district, notice of a tort claim with the Board of Education has been filed.
However, he said he did not immediately know how many parents are taking
legal action.
Lonky, who was at Woodrow Wilson since she was first appointed in
September 1999, was released on $25,000 cash bail.
* * *

How A Combination Of Faith & Science Saved My Son From Autism: Colin’s Story

[By Jennifer R. Young.]
http://www.redflagsweekly.com/discovery/2002_sept23.html

"What Appeared Moribund, will rise again, like the legendary Phoenix."
The journey of my son’s life continues to be inexplicably entwined
with mine–his mother. It began one cold January day in the year 2000.
The spark of Colin–the beginning of his journey back from the dark
perplexing world of autism–began that day inside my heart, as I lay huddled
crying hopelessly on my dining room floor.
I lay wailing, as only a mother could, realizing that my heart and
soul–my beautiful blond haired, brown-eyed 3 _ year old pride and joy–had
slipped away from me into a silent puzzling world of his old. That day I
learned that, according to the top neurologist and autism expert at
Georgetown University, my son was a "high-functioning autistic" child, and
would probably be that way forever.
I kept crying, feeling sorry for myself–a single working Mom in the
midst of a divorce–all alone to mourn what I felt was all the hopes and
dreams I had of having a little buddy, a typically developing child. I didn’
t know where to turn. I felt defeated. I almost gave up and broke down, and
accepted Colin’s fate.
But then, I heard a voice. The message, whether it was from God or my
subconscious, was simple: "Put Colin first."
It was all I needed to hear.
I decided at that moment that I was going to fight for my son at all
costs. I had faith that if no one else could help him (the medical doctors
and their offers to drug both Colin and us to cope with autism; the
alternative autistic "expert" doctors and their Gluten/Casein free diet,
which had already failed to save Colin ,or their expensive, high-dosage,
vitamin supplements which I refused to give my son)...then I would break out
on my own.
The next morning, I called Colin’s dad. "Pat," I said, "I’m quitting
my job.
I’m going to spend all my time, money, and effort on finding out what
is wrong with Colin. And when I run out of money, you are going to do the
same and support us until we’ve beaten this thing together." There was
silence.
"OK," said Pat. "If anyone can save Colin, it’s you. I’m behind you."
And so it was.
Like me, Colin’s dad had faith in our son, and also in me. And our
journey with Colin–a journey of recovery–began.
Faith and Science: Keys to Saving Colin
Often people ask me, "How did you know–autism is suppose to be for life–how
did you know that you could save him?"
I tell them, it was more than just a mother’s instinct. It was faith
and science.
I had faith that there was some reason why my son was slipping away. I
had watched my son suffer not only with the typical autistic traits (night
terrors, head banging, pervasive or obsessive play, eyes that looked away
into space, hyperactivity, speech delays). But I had watched my son suffer
through years of diarrhea and GI problems that no one could explain, which
doctors call, "autistic diarrhea." Colin had suffered with loose movements
and diarrhea on and off since he was 11 months old. No one ever knew why and
our pediatricians had always told us to just "cut back on the fruit." But
when he was diagnosed with Pervasive Developmental Disorder at age 3, I
demanded that we see a GI doctor in addition to the bevy of neurologists and
therapists who were analyzing my son.
Despite Colin’s history of GI symptoms (including a protruding
stomach, gas, diarrhea, low weight, night terrors), not one of the GI
doctors we visited offered to do the traditional blood tests and colonoscopy
that children often get when they have GI troubles. This outraged Colin’s
dad and me.
"How can our son be expected to develop typically if he isn’t
absorbing what he is eating?" I asked Colin’s dad. "And why is it so hard to
imagine that Colin may have a true GI disorder in addition to being
autistic?"
I had faith that there must be a scientific reason why both my ex and
I dreaded feeding our child. "He’s just a different person depending on what
I feed him. I am almost scared each meal," said Pat one day to me.
By that January 2001, Colin’s dad and I were just beginning to
recognize the true power of food. We put our son on the current alternative
autism diet of choice, the Gluten Free Casein Free diet, which is promoted
to thousands of other parents like us who knew our autistic children had
"food issues." But that January, after being on the GFCF diet for almost 6
months, Colin was still autistic. In fact, even though his night terrors
stopped without gluten, his obsessions and head banging got worse.
"If diet is the answer, then how come your son is on it (the GFCF) and
still autistic?" asked his neurologist that fateful day. "I know food is the
answer," I responded desperately as my son banged his head on the doctor’s
stool. "I just haven’t found the right diet yet. I need to understand him
better." I had the faith in food all right, but I was missing something
essential in the quest to understand my son’s mind and body: science. The
GFCF diet tells you if your child has something leaking in your body
(undigested wheat and milk protein), than stop eating those foods and you
may be cured. This made no sense to me. If my house has a leak and I stop
using the hot water...I still have a leak! I wanted to fix that leak.
Thanks to Colin’s leaky gut, he reacted to food as one might to a drug
or alcohol! When he ate rice, he ran around the room. When he ate sugary
foods, he sometimes bit his hand in pain. And when he ate any cookie–using
one of the many "wheat free/gluten free flours" on the market–my son lay
down and lined his cars up (pervasive play) and rubbed his belly and then
had diarrhea.
"Can’t you make a cookie that won’t make your son sick?" my mother
asked me once.
She was right. I felt like a failure for not knowing how to stop his
pain.
But instead of guilt, I vowed to not give up until I knew what foods
to feed my son without hurting him.
And so, I decided not to just have faith and love for my son, but to
listen to what his body was telling me and let that lead me to a possible
cure.
And so I began to document, yes–observe and note–my son’s life. I
recorded his food, his GI symptoms, his behavior, and his skin patterns.
After three months I analyzed my son’s "data." I concluded that my son
was either allergic to all starches and sugars (everything from rice,
potatoes, white sugar, corn syrup, etc.) and most raw vegetables...or there
was some scientific explanation for all this. I also concluded that this
undigested food, was somehow affecting my son’s behavior, his level of
functioning, and in effect "intoxicating him" from within.
And then I found, thanks to a friend of mine who was a Celiac (who had
also never healed from the gluten free diet), a scientific explanation: The
original Celiac diet, a grain free, starch free, and complex sugar-free diet
that rebuilds a damaged gut and explains what foods to eat in order to heal.
And at age 4, my son began the Selective Carbohydrate Diet (SCD), the
original celiac diet. Thanks to this diet, Colin would be re-born into our
lives in a way we never dreamed possible.
To Be Continued
* * *

RESEARCH

Language Dysfunction In Epileptic Conditions

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui
ds=12350043&dopt=Abstract <- - address ends here
Wheless JW, Simos PG, Butler IJ.
Department of Neurology, University of Texas-Houston, 77030, USA.

Epilepsy may disrupt brain functions necessary for language
development by its associated intellectual disabilities or directly as a
consequence of the seizure disorder.
Additionally, in recent years, there has been increasing recognition
of the association of epileptiform electroencephalogram (EEG) abnormalities
with language disorders and autism spectrum disorders.
Any process that impairs language function has long-term consequences
for academic, social, and occupational adjustments in children and
adolescents with epilepsy.
Furthermore, impairments in specific language abilities can impact
memory and learning abilities.
This article reviews interictal language function in children and
adults with epilepsy; epilepsy surgery and language outcome; and language
disorders associated with abnormal EEGs.
The relationship between epilepsy and language function is complicated
as the neuroanatomic circuits common to both overlap.
We demonstrate how magnetoencephalography (MEG) offers the ability to
analyze the relationship of language, EEG abnormalities, and epilepsy.
PMID: 12350043 [PubMed - in process]
* * *

Defining Broader Phenotype Of Autism: Genetic, Brain, & Behavioral
Perspectives.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui
ds=12349875&dopt=Abstract <- - address ends here
Dawson G, Webb S, Schellenberg GD, Dager S, Friedman S, Aylward E, Richards
T.
Center of Human Development and Disability, University of Washington,
Seattle 98195, USA.

Achieving progress in understanding the cause, nature, and treatment
of autism requires an integration of concepts, approaches, and empirical
findings from genetic, cognitive neuroscience, animal, and clinical studies.
The need for such integration has been a fundamental tenet of the
discipline of developmental psychopathology from its inception.
It is likely that the discovery of autism susceptibility genes will
depend on the development of dimensional measures of broader phenotype
autism traits.
It is argued that knowledge of the cognitive neuroscience of social
and language behavior will provide a useful framework for defining such
measures.
In this article, the current state of knowledge of the cognitive
neuroscience of social and language impairments in autism is reviewed.
Following from this, six candidate broader phenotype autism traits are
proposed: (a) face processing, including structural encoding of facial
features and face movements, such as eye gaze; (b) social affiliation or
sensitivity to social reward, pertaining to the social motivational
impairments found in autism; (c) motor imitation ability, particularly
imitation of body actions; (d) memory, specifically those aspects of memory
mediated by the medial temporal lobe-prefrontal circuits; (e) executive
function, especially planning and flexibility; and (f) Language ability,
particularly those aspects of language that overlap with specific language
impairment, namely, phonological processing.
PMID: 12349875 [PubMed - in process]
* * *

Converging Evidence For Brain Stem Injury In Autism.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui
ds=12349873&dopt=Abstract <- - address ends here
Rodier PM. OB/GYN, University of Rochester, NY 14642, USA.
patricia_rodier@...

The hypothesis that brain stem injury plays a role in the autism
spectrum disorders was suggested by evidence that exposure to thalidomide
during the earliest stages of brain development increases the risk of autism
spectrum disorders.
The implications for the embryological origin of autism first led to
studies of neuroanatomy in a human case and an animal model and then to
examinations of minor craniofacial features in autism.
But the general hypothesis had much broader implications.
It has now generated studies of the behavioral and neurological
symptoms of human patients, of human molecular genetics and population
genetics, and of animal behavioral teratology and molecular pharmacology.
The collection of this range of data was made possible by adding
experts from many fields to the research team.
They worked both independently and collaboratively to try to unravel
the etiology of autism.
PMID: 12349873 [PubMed - in process]
* * *

FUNDRAISING

M.I.N.D. Institute Grand Opening & Walk for Hope

[From a M.I.N.D. Institute announcement.]

Come join us Saturday, April 12, 2003 for our 3rd Annual Run/Walk for
Hope and the Grand Opening of the M.I.N.D. Institute's New Building located
on 50th Street, south of the Ronald McDonald House. Proceeds from this event
will help advance the understanding, care, and cure of neurodevelopmental
disorders and give hope to many families of children with autism and other
neurodevelopmental disorders. Whether you participate as a runner/walker,
volunteer or sponsor, we thank you wholeheartedly for your support and look
forward to seeing you there. Schedule of Events:
7:00 AM – Registration
8:15 AM - Kid's 1/2 mile run (ages 12 and under)
8:30 AM - 5K Run/Walk 10:00 AM - Grand Opening Celebration

Food, Music, Activities, Tours, Family Fun, Entertainment For more
information, please call (888) 324-0464 or send an e-mail to
kevin.duggan@.... To view our PHOTO ALBUM from last year's
event, please click here
http://mindinstitute.ucdmc.ucdavis.edu/walk/gallery/index.html
* * *

Autism Groups Join Parents for Full-Page Advertisement in the Washington
Post

[From a UA announcement.]
http://www.unlockingautism.org

After serious talks of placing a full-page advertisement in the
Washington Post to address the rise in disabilities among children, three
major organizations confirmed today that they will make substantial
donations towards the $76,000 project.
Unlocking Autism, Safe Minds, and The National Vaccine Information
Center have joined forces with JoAnne Pike and hundreds of parents,
caretakers and vendors, to campaign for answers from the government about
the growing number of vaccine-related disabilities among children in
America. "Something big needs to happen before anything will change," says
JoAnne Pike, Unlocking Autism Representative and mother of a child diagnosed
with autism. "The government isn't hearing us. National media isn't hearing
us. Lucrative drug companies are being protected. What weave got is a
national crisis silent one."
Safe Minds President Lyn Redwood believes the ad is an excellent way
to take action. "We know its time for something like this to happen, which
is why we are standing behind it 100%. Our children have been exposed to
one of the most toxic substance on earth, mercury, in excess of federal
safety guidelines from mandated infant vaccines and now suffer with a wide
range of physical and developmental disabilities and no one wants to discuss
this fact. This will be one powerful message to the public and government
officials if they haven't heard our message yet, they will."
Focusing on the simultaneous rise in vaccination rates, multiple
vaccines and chronic disease and disability in the past 20 years, the goal
of the ad is to educate the general public and notify vaccine lawmakers and
policymakers that something needs to be done. Barbara Loe Fisher, co-founder
and president of the National Vaccine Information Center (NVIC), the oldest
and largest vaccine safety advocacy organization in America, agrees that
something has to be done to get the public's attention. "We are not going to
wait another 20 years for the answers to legitimate questions about why so
many of our children are sick. We want to know why bright, healthy children
are never the same after getting vaccinated and we are not going to give up
until they give us credible answers."
Unlocking Autism President Shelley Reynolds is also ready to address
the rise in disabilities, "Only ten years ago in the state of Louisiana,
seven children per year received a diagnosis of autism. Today that number is
273. Keep in mind this is one small state. With these sobering numbers, it's
unrealistic to believe that physicians, with more patients than ever before,
have abruptly sharpened their diagnostic skills. After all, we're not seeing
1 in 250 adults with autism, but unfortunately this may be our fate if we do
not take immediate action. The rise in autism is very real and extremely
serious. It's time for government officials to heed the demands of thousands
of parents who are anything but wrong."
Parents and caretakers of vaccine-injured children can take immediate
action by contributing to the Washington Post ad. Visit
http://www.unlockingautism.org or write to JPiker@.... Caretakers are
urged to include their child’s name, age and diagnosis which will be
displayed in the ad.


_______________________________________________________

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* * *

COMMENTARY

More From Dr. Frank Marone on Science

[This picks up from an exchange of matters of science from yesterday.
http://groups.yahoo.com/group/-AuTeach/message/1968]

Dr. Michael Sichel sticks carefully to scientific discussion and
reveals much information that might otherwise not have been summarized so
clearly and succinctly in this forum.
The major flaw (scientifically) in the many studies Dr. Sichel cites
is that the same anomalies that are characterized as discriminating autism
also are present in some non-autistic individuals. This is a problem.
Regardless Dr. Sichel's assertions, we do not at present have a test
for 'autism' remotely akin to our current tests for, for example, Hepatitis
C, strep, HIV, and etc. More like chronic fatigue syndrome.
The point is not that children don't suffer from various deficiencies,
and these may be related to behavioral and other symptoms, but that there
are still no established correlations between these identified deficiencies
and 'autism', as we have still not yet as a whole firmly determined what
qualifies one as 'autistic'. Regardless one's position on the recent
increase in diagnoses, no one would assert that at least some of the
increase is not related to diagnostic changes and better identification.
These things have to be taken into account.
Comments about GFCF diets and other interventions suffer both from
being based entirely on testimonial and anecdotal evidence (not the
'empirical' evidence suggested) and that the design of intervention is AB
(baseline - treatment).
Testimonials are heart warming and compelling. As a parent, I would
be thrilled if I made a change and saw the kind of dramatic improvement
described in the "Success Stories" section of the GFCF diet website, for
example. I would of course persist. But this is scientifically irrelevant.
Dr. Sichel knows this, I believe.
It is well established in science that an AB design can only suggest a
possible effect. Random treatment assignment, reversal designs, and
multiple baseline designs all are available to move suggested effects into
the realm of established effectiveness. Where are these studies? Without
them, all such treatments remain "snake oil", a term I chose specifically
for its provocative nature. We are talking about children's lives here.
As a behaviorist, I of course agree that a Functional Medicine
approach is useful. Functional approaches rely on individualized, case by
case manipulations and observations. Your child climbs the walls, has
diarrhea, and screams incessantly. Testing reveals sensitivity to wheat or
dairy. After keeping track of symptoms for 30 days or so and identifying
those expected to be improved by a change in diet, you eliminate wheat and
dairy from your child's diet. Over the next 30 days, you continue to keep
track of 'symptoms' and are able to document improvements. You are probably
on to something, for your child.
Putting aside the lack of generalizability of such results, Dr. Sichel
must know that this is not how such interventions are routinely done.
Rather, someone suggests that your child may be 'gluten and/or casein
sensitive'. You make changes in your child's diet. Next, you look for any
changes in your child that might confirm the correctness of the change in
diet. Lo and behold, you are able to identify changes. Of course. When
you look for anything you cannot help but find it. This is why we have
statistical tests and prescribed scientific procedures.
It is not surprising to me that parents and other caretakers
constantly look for improvement in their children or charges. As it is said
"Hope springs eternal". I am also a parent and have dealt with many of
these things. It is unfortunate, however, that 'professionals' seem so
willing to support parents and caregivers in this pursuit, apparently
abandoning all the scientific principles that have so far resulted in the
longest and most trouble free human lifespan in history. The role of the
scientific professional is to ground us in empirical evidence. When I took
my daughter to the emergency room because she was thrashing about
uncontrollably, I relied on the neurologist to clarify that these were
'choreo-athetoid' movements not a seizure.
Combining ABA with Functional Medicine makes perfect. I do so every
day.

[Dr. Frank Marone is a Board Certified Behavior Analyst living and
working in the San Francisco Bay Area. Dr. Marone has been providing
positive applied behavior analysis services for children and adults with
autism for almost 30 years. He has parented two children considered
nondisabled and two children with profound disabilities. He writes
commentaries for the SAR regularly.]


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