FEAT: UK Scientists on Track of Autism Genes/ Medical Travel Assistance

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UK Scientists on Track of Autism Genes/ Medical Travel

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FEAT DAILY NEWSLETTER Sacramento, California http://www.feat.org

" Healing Autism: No Finer a Cause on the Planet "

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August 7, 2001 Search www.feat.org/search/news.asp

MISCELLANEOUS ITEMS

Also: * Medical Travel Assistance Program Available

* Parents Criticize Autistic Program

* Series Examines Complementary & Alternative Medicine

* Akerley, Past ASA President (1974)

UK Scientists on Track of Autism Genes

[by Ray Dunne in Reuters Health, London.]

http://abcnews.go.com/wire/Living/reuters20010806_380.html

Scientists at Oxford University said on Monday that they are zeroing

in on genes that might make children susceptible to developing autism.

Their discovery that sections of two chromosomes are linked to the

brain disorder confirms other research showing there is an inherited

component to the condition. Pinpointing the genes involved could help

doctors develop treatments for the baffling disorder, which strikes

approximately 5 in 10,000 children within the first 3 years of life.

Scientists believe environmental and genetic factors are both involved

in triggering autism, although exactly which factors are involved remains

unclear. " Currently there is no consensus amongst researchers about what is

actually going wrong in the brain when a child develops autism, " said

Professor Monaco, director of the Wellcome Trust Centre for Human

Genetics at Oxford.

" The discovery of these regions...both confirms the genetic component

of autism, and will enable us to narrow our search down to specific genes

and the functions they control. This should cast light on what is going

wrong, and hopefully give us clues on how autism could be treated, " he added

in a statement.

The scientists, who are part of the International Molecular Genetic

Study of Autism Consortium, screened the DNA of more than 150 pairs of

siblings with autism. They found two regions on chromosomes 2 and 17 that

may house genes that make individuals more susceptible to the condition.

Their study also confirmed previous findings that suggested that areas

on chromosomes 7 and 16 are also significant in determining whether a child

is likely to develop autism.

Members of the international research team, which includes researchers

from Europe and the US, are now planning to extend their work to identify

the specific genes responsible for the condition, Monaco told Reuters

Health. These genes are believed to play a key role in brain development.

Copyright 2001 Reuters News Service. All rights reserved.

* * *

Medical Travel Assistance Program Available

“Medical Travel Assistance Program " Helping Those With Autism Soarce

[Contact VCNLGROSSM@....]

If you have a child, or know of a child, in need of travel to medical

care outside of the immediate area, Unlocking Autism may be able to help.

Unlocking Autism has been able to partner with several airlines to assist

parents of children with Autism in getting to medical appointments in other

states.

Initial contact information should include:

Child's name and age

Legal Guardian's name

Name of person accompanying child on trip

Departure and Return Dates

Departure and Return Airports

and, any special accommodations the child may need (assistance, wheelchair,

etc.).

Please submit application information by using the contact form on the

main page of the Unlocking Autism web page (www.unlockingautism.org)

More information may be requested, as each individual airline has

their own requirements for applying.

All applications are subject to review by participating airline

carriers. Travel grants are based on need, flight schedules, and

availability frequent flyer mile donations.

If you would like to donate your frequent flyer miles toward travel

for children with autism please check the box on the website and you will be

contacted.

* * *

Parents Criticize Autistic Program

School District subject of probe

[by Annemarie Mannion, in the Chicago Tribune.]

http://www.chicagotribune.com/news/printedition/chi-0108050035aug05.story?co

ll=chi%2Dprintmetro%2Dhed <-- Address ends here.

Parents of autistic children in Valley View School District 365-U are

complaining that the special education program is inadequate, a claim the

state Board of Education is investigating.

Another group, concerned about the range of special education programs

in seven south suburban school districts and education co-ops, is meeting

with state officials this month in an attempt to speed up evaluations of the

programs.

To and Jay Ponnambalam of Bolingbrook, whose youngest child,

Jovan, is 5 but can speak only 40 words and not in sentences, the issue is

whether Valley View 365-U should be providing more and different help for

autistic children.

" I can't see waiting until he's failed and then trying to bring him

back, " Ponnambalam said.

A spokesman for the state Board of Education, Wade , confirmed

an investigation into the program, but he would not provide details.

At least part of parents' concern is how the district is interpreting

the federal requirement that special needs children be taught in the least

restrictive environment. Parents of autistic children fear placing them in

classes with pupils who might have other physical, learning or emotional

disabilities will hinder their progress.

But Ellen Lilly, the district's director of special education, said

that though children were categorized and placed with others like them in

the past, a recent civil lawsuit in Illinois mandated a change. Known as

" Cory H, " the case said a child's particular needs--rather than a

category--should govern his or her placement.

The school district had operated an autism program for about two

decades, but would not be abiding by the law if it kept it, said Supt.

Van Winkle.

" The bottom line with Cory H is that Illinois school districts cannot

have a classroom that has a label, " Van Winkle said.

" It's not the disability, but the individual needs of the student that

should dictate the services, " Lilly said.

The irony, according to Ponnambalam, is that the most appropriate

program to suit her son's needs may be a small class of pupils with the same

disability, overseen by a teacher with experience in teaching autistic

children. Jovan also would benefit from a full-day program instead of his

current half-day program, she said.

Addressing needs

Lilly said Ponnambalam's son and other children with autism in the

district will be assigned to a program and services that address their

needs.

" Not all children with autism are going into a less restrictive

classroom, " Lilly said.

The Ponnambalams believe using individual needs as a guide should mean

that the district consider the recommendations of a study of her son done

last year by the University of Chicago. Those included giving Jovan a

full-day, extended year, preschool program designed for children with

autism.

District officials did not agree with the recommendations, puzzling

Ponnambalam. " If you're going to tailor-make a program for student, why

would you blow off a report from the University of Chicago? " she said.

Although Lilly would not comment on Jovan's case, she said private

assessments of pupils are reviewed by a team of district staff members

including special education teachers.

" It may be that they don't agree with it, " Lilly said.

State law does not require children to attend a full-day class until

they are 7 and school districts are not mandated to provide it to anyone

under that age.

Of about 1,800 pupils in the district who are in special education,

Lilly said about two children under age 7 are in full-day programs.

Bollero, an attorney from St. who specializes in

disability law and who has represented the Ponnambalams, said children with

autism, in particular, have a difficult time adapting to change.

" What's being done to accommodate them to the changes? " she said.

" I think it would be unfair to just throw them and a new teacher

together on the first day of class. "

Lilly said the district has 85 special education teacher positions

with nine unfilled as of August.

Allegations not unusual

Charges that the school district is failing to meet pupils' needs are

far from unusual, said Grubbs-Mahood of Peotone, a member of Parents

Alliance for Compliance in Special Education. It includes parents from seven

southwest suburban school districts and co-ops, including 365-U, that

provide special education.

" Right now, non-compliance [with state laws] is rampant throughout the

state, " she said.

The group, formed in December, is seeking to have the districts' and

co-ops' special education programs, including 365-U's evaluated within the

first two months of the school year.

They also want parents to participate in the evaluation process.

Current law requires that evaluations be done every six years.

State officials are slated to meet with the group Aug. 13 in Matteson

to discuss the proposed evaluation schedule. Copyright © 2001, Chicago

Tribune

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* * *

ls Series Examines Complementary And Alternative Medicine

Experts classify hundreds of alternative therapies, including chicken soup

http://www.eurekalert.org/pub_releases/2001-08/acop-ase073101.php

Digitalis, nitroglycerin and graham crackers were once considered

alternative medicine. Bleeding, mercury and antimony were once used as

medical therapies by elite, educated physicians but are not part of the

modern physician's arsenal. Alternative medicine has a long,

well-established history in the United States. But then and now, alternative

medicine has fluid boundaries and often changing definitions of what is

considered conventional or alternative.

" The alternative medicine 'boom' is not new, " says Ted J. Kaptchuk,

OMD, one of the guest editors of a new series in ls of Internal

Medicine. " What's new is that orthodox medicine has abandoned its crusade

against alternative medicine and is trying to accommodate widespread patient

belief and acceptance of these practices.”

The new ls series on complementary and alternative medicine (CAM)

begins in its August 7 issue with articles exploring the rich history of

medical pluralism in the United States and classifying the hundreds of

current CAM therapies into a new taxonomy.

" Our patients are using and seeking professional advice about a wide

spectrum of healing practices, " says M. Eisenberg, MD, the other guest

editor of the series. " The series summarizes the state of science involving

complementary and alternative medicine and helps put this field into a

useful context for practicing clinicians.”

Drs. Eisenberg and Kaptchuk have developed a new classification system

to organize the porous, flexible field of complementary and alternative

medicine. They suggest eight categories:

professional systems, such as chiropractic, acupuncture and homeopathy

popular health reform, such as taking vitamins, food supplements or eating

special diets

New-Age healing, such as crystals, magnets, spirits, mediums, Reiki, and

qigong

mind-body cures, such as biofeedback, hypnosis and guided imagery

" non-normative scientific enterprises, " such as chelation therapy, iridology

and hair analysis

ethno-medicine, such as Haitian vodun, Puerto-Rican spiritism and Hmong

practices

religious healing, such as Christian Science and charismatic renewal

folk medicine, such copper bracelets and chicken soup.

The ls series will examine CAM modalities such as herbs,

acupuncture, chiropractic and homeopathy; the social context of CAM

(credentialing practitioners, malpractice issues); therapies in defined

clinical areas, such as cancer; the effectiveness of CAM therapies, and

other topics such as placebos, pharmacology of herbal products and the rules

of scientific evidence.

* * *

Akerley, Past ASA President (1974)

[This comes from Jack Kyne, Past President (1975)

of the Autism Society of America.]

I just wanted to let the FEAT Daily Newsletter

readership know of the passing of Akerley, ASA

Past President (1974) this past Friday.

So many years have passed since chaired and

led the activities of the Legislative Committee of the

National Society for Autistic Children ( now the

Autism Society of America ) that it is highly likely

the FEAT membership will not know of her role in the

passing of the first national law, Public Law 94-142,

requiring free public education in all states for all

children with autism and related developmental

disabilities.

While all of the then Legislative Committee can

share credit for this monumental event, it was who

deserved the lion's share of the victory for our

children. Without this first legislative act, it is

difficult to really know how long our parents and

their children would have had to struggle to receive a

free and, hopefully, appropriate education in our

public schools and private schools through publicly

supported funding.

Thus, we parents and our children who have received

publicly funded education rights since 1974 owe a

great debt of gratitude to Akerley. Since

would never have sought recognition or acclaim for all

of the many hours of work invested in her achievement

for our kids because she did what she did for her son

Ed and all children like him.

In closing, there isn't a parent of or a child

with autism or related developmental disabilities who

receives public education or public funding for

private programs today who doesn't owe a debt of

gratitude to Akerley for her pioneering work of

yesteryear. It can all be repaid should anyone wish

with a prayer for her repose or just a silent vote of

thanks in her memory!

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Lenny Schafer, Editor PhD Ron Sleith Kay Stammers

Editor@... Decelie CALENDAR: Guppy events@...

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