Fwd: Autism Skyrockets In Quebec: A Secret No More

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Asperger's Expert Tony Attwood Returns to US, West Virginia [From an Autism Society of West Virginia announcement.] Dr. Tony Attwood and Dr. Temple Grandin, two world reknown experts onautism, will be speaking in Huntington, WV on April 16 - 17, 2004 at theannual conference of the Autism Society of WV. The meeting is beingcosponsored by the Autism Training Center at Marshall University, the AutismServices Center of Huntington, WV, and the Huntington Area Autism Societyand will take place at the Radisson Hotel. Dr. Grandin, of Colorado, whohas autism, has written two popular books–Emergence: Labeled Autistic andThinking in Pictures, both powerful personal accounts of what autism islike. She is also an animal scientist who has designed as many as one thirdof all the livestock-handling cattle shutes in the U.S. Over the last 10years Dr. Grandin’s story has been widely covered by many of the nation’stop media. Dr. Tony Attwood, an Englishman now living in Brisbane, Australia anda leading world authority on Asperger’s Syndrome–often referred to ashigh-functioning autism--will conduct a full day workshop on Saturday, April17. He will present information from his 30 years of research and clinicalexperience. His highly acclaimed book, Asperger’s Syndrome: A Guide forParents and Professionals (1997) is popular with parents, professionals, aswell as with individuals who have Asperger’s. A riveting speaker, Dr.Attwood’s presentations are noted for their compassionate and common senseapproach to working with people with that diagnosis.In addition, Dr. Grandin’s mother, Eustacia Cutler, will be offering storiesand insights of her family’s experience about which she has lecturedthroughout the U.S. and in other countries. A graduate of Harvard, she has worked in theater and cabaret,performing and writing. Among her credits are two TV documentaries: "TheDisquieted" and "The Innocents." She has three other children.Other topics on the Friday Conference program are presentations by WestVirginia's two autism programs--the Autism Training Center at MarshallUniversity, a statewide program that offers a variety of direct training andresources to WV families and educators of children with autism, and AutismServices Center, specializing in autism, providing comprehensive, lifespan,direct care services in residential and community settings to assistindividuals with autism and their families. CEUs will be offered by Marshall University. Information onregistration is available at 304-696-2332, or by visitingwww.marshall.edu/coe/atc after February 4th. Stipends will be available toassist with conference costs for residents of West Virginia withdevelopmental disabilities and their families. This project is made possiblethrough a grant from the West Virginia Developmental Disabilities Council.Stipends for teachers and money for the cost of substitute teachers isavailable through a grant from the West Virginia Department of Education.Parents may apply for these funds as well. Editor's note: Tony Attwood will be speaking at a number of citiesacross the US. You can check with the Autism Calendar for more information:http://home.doitnow.com/~events. Temple Grandin's appearances around thecountry are also often listed.* * *MEDIA

SCHAFER AUTISM REPORT " Healing Autism:

No Finer a Cause on the Planet "

________________________________________________________________

Wednesday, January 28, 2004 Vol. 8 No. 19

PUBLIC HEALTH

* Autism Skyrockets In Quebec: A Secret No More

* Virginia Introduces Mercury Amalgam Bill

RESEARCH

* Genetic Screening Recommended To Detect New Neurodegenerative

Disorder In Men Over Age 50

CARE

* Teacher's Abuse Story Discredited By Witnesses

EVENTS

* Thimerosal and Autoimmunity / Missouri HB 852

* NoMercury.Org Web Site For State Actions

* Asperger's Expert Tony Attwood Returns to US, West Virginia

MEDIA

* Autism Prevalence on NPR

COMMENTARY

* School Vouchers for Special Education?

LETTERS

* More on " Lovaas

PUBLIC HEALTH

Autism Skyrockets In Quebec: A Secret No More

[by RFD Columnist, Dr. F. Yazbak, TL Autism Research. Falmouth,

Massachusetts.]

http://www.redflagsweekly.com/conferences/autism/2004_jan25.html

According to McGill University Professor Fombonne, the prevalence

rate of autistic disorders has risen to 60 per 10,000 individuals [1 in

167]. For decades, such a rate was estimated to be 2 to 5 per 10,000 [1 in

5,000 to 1 in 2,000].

In 2003, the number of individuals with Autism and Pervasive

Developmental Disorders (PDD) under the age of 20 was estimated at 10,500 in

the Province of Quebec and 45,000 in Canada.

For the last 5 years, I have extensively researched the recent

spectacular increase in autism and PDD and have been convinced that the most

accurate statistics on those syndromes are those obtained from school

records, because neither parents nor school authorities are likely to accept

such a diagnosis lightly. Graph I shows the increase in cases of autism in

Quebec in the last decade. To view the graph and the rest of this report go

to:

http://www.redflagsweekly.com/conferences/autism/2004_jan25.html

* * *

Virginia Introduces Mercury Amalgam Bill

[From a press release from Denatal Amalgam Mercury Syndrome (DAMS).

Thanks to the NVIC.]

" Finally, after more than 160 years, consumers may have the right to

know that 'silver' fillings, also known as dental amalgams, contain

approximately 50% mercury, " so stated Anne Ferreira, Dental Amalgam Mercury

Syndrome (DAMS) spokesperson, when commenting about proposed Virginia

General Assembly Bill SB 187.

Introduced by Senator B. , D-Norfolk, SB-187 would

provide very important informed consent legislation that would require

dentists to disclose to their patients that they have a choice of durable

and safe white composites rather than " silver " fillings that contain

mercury, a known neurotoxin. Dentists will also not be able to implant a

" silver " mercury filling without providing the patient with information on

the health risks of this filling material and would require consent in

writing before it is implanted in the tooth.

While the American Dental Association (ADA) claims that the amount of

mercury emitted from mercury amalgam dental fillings is too small to cause

health harm, the ADA has conflicts of interest according to Ferreira. The

ADA was granted patents on two formulations of amalgam in the 1970's (now

expired) and they receive fees from amalgam manufacturers for granting the

ADA's Seal of Acceptance.

The EPA considers the " silver " amalgam filling material hazardous

waste before it is placed in a patient's teeth and hazardous waste after it

has been removed. The FDA has not approved the mercury in the dental amalgam

or " silver " fillings. Passage of this bill would give the right to all the

people in Virginia to have an informed consent on mercury-based dental

fillings. The Senate Health and Education Committee will hold a hearing on

this bill on Thursday, January 29th at 9 AM in Senate Room B of the General

Assembly Building.

The bill can be viewed at:

http://leg1.state.va.us/cgi-bin/legp504.exe?041+ful+SB187

Other sites about mercury in dental fillings and the environment are:

http://www.testfoundation.org www.amalgam.org

http://www.iaomt.org www.mercurypolicy.org

http://www.altcorp.com

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* * *

RESEARCH

Genetic Screening Recommended To Detect New Neurodegenerative Disorder In

Men Over Age 50

Common and small mutation in the fragile X gene, once thought to have no

health effects in male carriers, now linked to tremors, balance problems and

dementia.

http://www.eurekalert.org/pub_releases/2004-01/uocd-gsr012304.php

A team of researchers, led by physicians at the UC M.I.N.D

Institute, have discovered a new, progressive neurodegenerative disorder

that predominantly affects men over age 50 and results in tremors, balance

problems and dementia that become increasingly more severe with age.

A significant but currently unknown number of adults with these tremor

and balance problems are being diagnosed as normal aging, Parkinson's

disease, senile dementia and Alzheimer's disease when their condition may be

accurately and easily identified with a standard DNA blood test ordered by

their doctor. The discovery is published in the Jan. 28 issue of the Journal

of the American Medical Association.

Known as fragile X-associated tremor/ataxia syndrome, or FXTAS

(pronounced fax-tass), the disorder affects older men who are carriers of a

small mutation (premutation) in the same gene that causes fragile X

syndrome, the most common cause of inherited mental retardation. Nearly 1 in

800 men in the general population carries this premutation in the fragile X

gene, and UC research suggests that as many as 30 percent of

carriers -- roughly 1 in 3,000 men -- may develop FXTAS later in life.

" FXTAS may be one of the most common causes of tremor and balance

problems in the adult population, yet it is being misdiagnosed because

neurologists who see adults with movement disorders are not aware that they

need to look for a family history of fragile X in grandchildren or to check

for the presence of the premutation in the fragile X gene, " said Randi

Hagerman, medical director of the UC M.I.N.D. Institute. (M.I.N.D.

stands for Medical Investigation of Neurodevelopmental Disorders.)

Screening for the gene mutation in men who have tremor and balance problems

is important regardless of their family history, especially when accompanied

by other signs such as parkinsonism (rigidity in movement), short-term

memory loss and dementia. Family genetic counseling can help those affected

with FXTAS, as well as future generations who may inherit fragile X

syndrome. Research studies also are under way to specifically determine

which medications are better suited to alleviate FXTAS-related problems, and

whether other therapies, such as surgery to disable nerve tracks, may

actually exacerbate balance problems.

Hagerman, a developmental and behavioral pediatrician who has

specialized in the diagnosis, research and treatment of fragile X for more

than 20 years, began looking for a connection between children and their

grandfathers because the mothers of her fragile X patients were worried

about their own fathers, who were falling down, becoming forgetful and

experiencing other neurological problems. Hagerman, along with her husband,

, a professor of biological chemistry at UC School of Medicine,

led the team of researchers from UC M.I.N.D. Institute, University of

Colorado Health Sciences Center, and RUSH-Presbyterian-St. Luke's Medical

Center in the JAMA study.

The researchers looked at 192 individuals whose families belong to the

Northern or Southern California Fragile X Associations or who were family

members of patients seen at the UC M.I.N.D. Institute. While only 17

percent of the men in their 50s had FXTAS, the percentage of individuals

with tremors and balance problems increased with each decade of life, to 38

percent of men in their 60s, 47 percent of men in their 70s, and 75 percent

of men in their 80s. The study also showed that the majority of older males

carriers of the premutation will develop at least mild symptoms of FXTAS.

FXTAS is characterized by tremors, balance problems and dementia that

become increasingly more severe with age. Initial signs of the disorder may

include difficulty writing, using eating utensils, pouring water and

walking. These initial symptoms progress over years or even decades, until

carrying out many of the tasks of daily living and walking without

assistance becomes difficult or impossible. Other features include

short-term memory loss, anxiety, decreased sensation in the lower

extremities to touch and vibration, lower-limb muscle weakness and

parkinsonism.

" FXTAS is an enigma, " said Hagerman, who also holds the

Tsakopoulos-Vismara Endowed Chair in Pediatrics at the UC School of

Medicine and Medical Center. " The disorder appears later in life in men who

are generally healthy throughout childhood and early-to-mid-adulthood and

have normal to above-average intelligence, yet is caused by a defect in a

gene known to cause mental retardation usually diagnosed in early

childhood. "

The underlying cause of FXTAS is a change, or mutation, in the fragile

X mental retardation 1 gene, or FMR1. Under normal conditions, this gene

produces a protein that maintains the proper functioning of nerve cells in

the brain. The gene causes both fragile X syndrome and FXTAS when a

particular segment of DNA is repeated too many times. The repetition

informally is called a " CGG repeat " because it contains the same trio of DNA

building blocks -- cytosine, guanine, and guanine in the same repetitive

order.

The average person has 30 CGG repeats in the FMR1 gene. When an

individual has 200 or more CGG repeats in the FMR1 gene, the individual

makes little or no FMR1 protein and has fragile X syndrome. With 55 to 200

CGG repeats, an individual is considered a carrier of the premutation, which

can lead to FXTAS later in life and to fragile X (the full mutation) in the

next generations. Male carriers are at high risk to develop FXTAS, as well

as for passing on the gene mutation to all of their daughters, who in turn

are at risk to have children with fragile X syndrome.

Tissue and postmortem studies of brains from FXTAS patients, led by

Hagerman and UC assistant professor of pathology Greco,

showed accumulations of abnormal cellular material in the form of inclusion

bodies in the nuclei of brain cells, (specifically neurons and astrocytes)

throughout the cortex and brainstem regions. The greatest densities were

found in the hippocampus and frontal cortical regions, areas of the brain

that control movement and are important in learning, memory and emotion.

" The formation of inclusion bodies in the nuclei of nerve cells offers

an important clue about the cause of the disorder, one that may ultimately

help with the development of therapies for both FXTAS and fragile X

syndrome, " said Hagerman. In 2001 the Hagerman team reported the first

cases of FXTAS in men and suggested that the neurological dysfunctions could

be due to the elevated levels of messenger RNA from the FMR1 gene mutation,

which are consistently observed in the blood of premutation carriers. As a

result, they proposed the hypothesis that FXTAS results from an RNA toxic

gain-of-function.

" Further study of these cellular processes can lead to a better

understanding of the mechanisms leading to fragile X syndrome and may offer

new targets for developing treatments, " Hagerman said. In addition,

because some carriers of the premutation develop FXTAS while others appear

protected, other factors also may play a role in disease development, offeri

ng additional clues to the origin of this disorder.

The UC M.I.N.D. Institute, in Sacramento, Calif., was founded in

1998 as a unique research center where parents, community leaders,

researchers, clinicians and volunteers to discover treatment and cures for

autism, learning disabilities, fragile X syndrome and other

neurodevelopmental disorders. Its Fragile X program is a leading

international center for the diagnosis, research and treatment of fragile

X-related disorders.

Additional information about Fragile X and FXTAS for both physicians

and patients is available by calling 916-703-0200 at the UC MIND

Institute ( http://www.ucdmc.ucdavis.edu/mindinstitute/ ) as well as the

National Fragile X Foundation (http://fragilex.org or by calling

1-800-688-8765).

This study was supported by grants from the National Institute of

Neurological Disorders and Stroke and the National Institute of Child Health

and Development, as well as general support from the UC M.I.N.D.

Institute.

The UC M.I.N.D. Institute, in Sacramento, Calif., was founded in

1998 as a unique interdisciplinary organization of parents, community

leaders, researchers, clinicians and volunteers to study and treat autism

and other neurodevelopmental disorders. More information about the institute

is available on the Web at http://www.ucdmc.ucdavis.edu/mindinstitute/ .

* * *

CARE

Teacher's Abuse Story Discredited By Witnesses

[From Channel KFOR-TV 4's website.]

http://www.kfor.com/Global/story.asp?S=1618232

Last week Vicki said her daughter was abused with a belt

while in class. Her daughter has Down syndrome and Autism. She is not able

to speak. But there was reportedly an eyewitness to the abuse.

" I was told by someone who worked at the school that there had been

incidents going on, " said. " had been spanked with a belt by

the teacher. "

Last week the teacher in question, , told us through her

attorney that there were no adult witnesses to the alleged abuse. But,

Oklahoma's NewsChannel 4 has obtained documents from the police

investigation. In those documents several adult co-workers describe to

police instances of abuse they say they have witnessed first-hand.

One coworker says she saw take off her belt and strike a

child with it. Another coworker says she saw the teacher grab a student,

call the student a bitch, and threaten to break the student's legs.

Oklahoma's NewsChannel 4 has also learned DHS has received several

letters alerting state authorities to possible cases of student abuse by

, who is expected to turn herself into authorities Tuesday

afternoon.

* * *

EVENTS

Thimerosal and Autoimmunity / Missouri HB 852

[From an announcement by Rita Shreffler

r.shreffler@....]

The public meeting for Missouri H.B. 852 banning thimerosal in

vaccines starting January 1, 2005, is scheduled for Wednesday, February 4, 5

PM, in hearing room six of the Capitol Building in Jefferson City. If you

would like to make a statement at this meeting, call Rep. Roy Holand's

office at 573-751-2210 and speak with Marilyn to get your name

added to the schedule. Statements should be five minutes or less. If you

cannot attend, please fax a letter, two pages maximum, telling your story

and voicing your support of HB 852 to Rep. Holand's office: 573-522-8665.

Letters can also be mailed to:

Rep. Roy Holand, M.D.

MO House of Representatives

201 West Capitol Avenue

Room 113

Jefferson City MO 65101

You do not have to be a Missouri resident to support this legislation,

either in person at the meeting or through correspondence. The broader the

response, the more likely this vital health care legislation will be

enacted.

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* * *

NoMercury.Org Web Site For State Actions

[From Sallie Bernard of Safe Minds.]

Introducing the NoMercury.Org web site, established to support

state-level efforts to remove mercury from vaccines, amalgams and other

health/medical products. New Boyd Haley video available for viewing on the

site!

" Mercury is a well established neurotoxin. It is not safe in any

amounts. The Federal Government has ignored mercury in vaccines and dental

amalgams as a problem.

It is time for grass root efforts in each State Legislature to end

this toxic tragedy. "

Please visit and help these important state efforts.

http://www.NoMercury.org

* * *

Asperger's Expert Tony Attwood Returns to US, West Virginia

[From an Autism Society of West Virginia announcement.]

Dr. Tony Attwood and Dr. Temple Grandin, two world reknown experts on

autism, will be speaking in Huntington, WV on April 16 - 17, 2004 at the

annual conference of the Autism Society of WV. The meeting is being

cosponsored by the Autism Training Center at Marshall University, the Autism

Services Center of Huntington, WV, and the Huntington Area Autism Society

and will take place at the Radisson Hotel. Dr. Grandin, of Colorado, who

has autism, has written two popular books–Emergence: Labeled Autistic and

Thinking in Pictures, both powerful personal accounts of what autism is

like. She is also an animal scientist who has designed as many as one third

of all the livestock-handling cattle shutes in the U.S. Over the last 10

years Dr. Grandin’s story has been widely covered by many of the nation’s

top media.

Dr. Tony Attwood, an Englishman now living in Brisbane, Australia and

a leading world authority on Asperger’s Syndrome–often referred to as

high-functioning autism--will conduct a full day workshop on Saturday, April

17. He will present information from his 30 years of research and clinical

experience. His highly acclaimed book, Asperger’s Syndrome: A Guide for

Parents and Professionals (1997) is popular with parents, professionals, as

well as with individuals who have Asperger’s. A riveting speaker, Dr.

Attwood’s presentations are noted for their compassionate and common sense

approach to working with people with that diagnosis.

In addition, Dr. Grandin’s mother, Eustacia Cutler, will be offering stories

and insights of her family’s experience about which she has lectured

throughout the U.S. and in other countries.

A graduate of Harvard, she has worked in theater and cabaret,

performing and writing. Among her credits are two TV documentaries: " The

Disquieted " and " The Innocents. " She has three other children.

Other topics on the Friday Conference program are presentations by West

Virginia's two autism programs--the Autism Training Center at Marshall

University, a statewide program that offers a variety of direct training and

resources to WV families and educators of children with autism, and Autism

Services Center, specializing in autism, providing comprehensive, lifespan,

direct care services in residential and community settings to assist

individuals with autism and their families.

CEUs will be offered by Marshall University. Information on

registration is available at 304-696-2332, or by visiting

www.marshall.edu/coe/atc after February 4th. Stipends will be available to

assist with conference costs for residents of West Virginia with

developmental disabilities and their families. This project is made possible

through a grant from the West Virginia Developmental Disabilities Council.

Stipends for teachers and money for the cost of substitute teachers is

available through a grant from the West Virginia Department of Education.

Parents may apply for these funds as well.

Editor's note: Tony Attwood will be speaking at a number of cities

across the US. You can check with the Autism Calendar for more information:

http://home.doitnow.com/~events. Temple Grandin's appearances around the

country are also often listed.

* * *

MEDIA

Autism Prevalence on NPR

[Thanks to A. Karney,]

Link to NPR audio on prevalence of autism cases -- aired Monday

morning (Jan. 26, 2004)

www.npr.org/dmg/audioplayer.php?prgCode=ME & showDate=26-Jan-2004 & segNum=7

<-- URL address ends here.

COMMENTARY

School Vouchers for Special Education?

[From the Salt Lake Tribune. The opinions expressed are those of the

writer and do not necessarily reflect the views of the Schafer Autism

Report.]

http://www.sltrib.com/2004/Jan/01262004/opinion/132673.asp

Tuition-voucher systems rarely benefit public schools, and as a

general rule we oppose them. However, one bill headed for the Legislature is

an exception because it addresses the profound needs of severely disabled

children that the public schools are unequipped to meet.

The bill would allow parents to take the state money allocated to the

public school for their special-needs child and use it to help them pay

tuition at a private school.

This proposal differs from most tuition tax credit and voucher plans

that drain funds from public schools because it affects only a small group

of students, those for whom an Individual Education Plan has been set up

according to federal guidelines. These children have physical or mental

disabilities that severely limit how much they can learn in a traditional

school setting.

The federal and local money the public school receives on a per-pupil

basis would not be reduced under the proposal. Only state money the

public-school system would have spent on that child would go to the parents

to help pay the cost of an individualized private-school program.

The bill, sponsored by Rep. J. Philpot, R-Midvale, is named

appropriately after Carson , a 5-year-old boy with autism. His parents

pay $21,000 a year for private-school tuition at Carmen B. Pingree School

for Children with Autism so he can learn basic social and physical skills.

Attending to such a child can take a disproportionate amount of a

public-school teacher's time away from classroom teaching duties. Trying to

educate students like Carson in regular classrooms shortchanges their

classmates, their teachers -- many of whom are not trained to help children

with disabilities -- and the students themselves.

Many legislators are apt to agree with the concept of Philpot's plan,

but a critical test will be the cost to the state, and that is still being

calculated by legislative analysts. The funds transferred out of the public

schools should be audited to guard against misuse, and that would add to the

bill's total cost.

The funds, from $3,100 to $5,300 per student per year, depending on

the type and severity of the child's disability, would not pay the full cost

of private-school tuition, which can reach tens of thousands of dollars per

year. But it would help.

The bill's sponsors acknowledge there are not enough specialized

private schools to educate the children who need such instruction. But they

say directors at Pingree and other schools could expand their programs if

more parents could afford to enroll their children.

This bill would help some parents do that, and, in turn, would free

public-school teachers to focus on students with less-intense needs.

* * *

LETTERS

More on " Lovaas "

Kiasi of land made some important points in his “Response to

An Article Promoting ABA.” Foremost of these is the reality that few home

ABA programs achieve the 47% recovery/success rate that Lovaas achieved.

(The pseudo-ABA programs offered by some schools districts also have poor

results.) This should not be a surprise. Lovaas has emphasized many times

that his research program had very strict quality controls for all aspects

of training and supervising therapists--standards that exceed what any home

program could do. In addition to a clinic-based program based on his

research, the Lovaas organization “LIFE“ (http://www.lovaas.com/) also

provides a workshop model for assisting home programs. LIFE does not make

any claims for the recovery rate of children in the workshop model but

estimates are that the recovery rate is less than half of the 47% success

rate in the more controlled Lovaas clinic model.

What can we conclude from these facts? First, even a 20% chance of

recovery is better than doing nothing or depending solely on unproven

treatments like diet, medications, etc. Whatever else you decide to try,

your best chance is to start with a solid ABA program and build on that with

diet, biomedical treatments, etc.

Lovaas and others have identified two things that have a huge impact

on the success of ABA programs. First, the Lovaas study showed that the

number of therapy hours per week is critical. A program of 40 hours a week

is not just 4 times better than 10 hours/week, it is probably 50 times more

effective. The second critical factor is “quality.” The marks of a quality

program are: (1) quality people with a proven record of success, (2) weekly

observations and training of each therapist by an experienced Senior

Therapist, (3) parental commitment to learning and applying ABA daily

outside of therapy hours, (4) actual data and regular progress reviews to

compare your child with the progress seen in children who recovered.

- Eland Lenexa, KS david.r.eland@...

In reply to Kiasi's letter regarding outcome of ABA programs,

referencing Lovaas, I attended Dr. Vince Carbone's Verbal Behavior 3 Day

conference in 2003 and I believe Carbone says that Lovaas did not follow

Skinner's Analysis of Verbal Behavior. If that is true and the ABA programs

are being conducted without this methodology I'm wondering if the results

would be low.

Carbone talks about teaching " manding " with the child being the first

speaker and not to do mass trials as so many ABA programs do. Getting Board

Certified Behavioral Analysts and having the SLP's trained and certified in

this too. We're beginning this method at age 8 and I think we're on to

something.

-Anne Barbano

Note: Dr. Carbone's schedule of presentations, along with his web site

address, can be found on The Autism Calendar:

http://home.doitnow.com/~events/

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