Schafer Autism Report: Microsoft and Autism * Why The ASA Bylaws Should NOT be changed

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Microsoft Leading The Way In Covering Autism * Why The ASA

Bylaws Should NO

SCHAFER AUTISM REPORT " Healing Autism:

No Finer a Cause on the Planet "

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June 6, 2002 CALENDAR LISTING: EVENTS@...

>> SPECIAL NOTE TO ASA MEMBERS: Your ballot for electing <<

Board Directors should have arrived to you by now by mail.

Please vote! Here are Schafer's endorsements:

Baumann Rick Rollens Jeff Sell

Details: www.feat.org/scripts/wa.exe?A2=ind0205 & L=FEATNEWS & P=R5981

ALSO: Why The ASA Bylaws Should NOT Be Changed (see commentary

below).

CARE

* Microsoft Leading The Way In Covering Autism

ADVOCACY

* Why The ASA Bylaws Should NOT Be Changed

ART

* Images of a Boy's Life

RESEARCH

* Persistent Crying In Infancy Tied To Later Problems

* Triangular Head Shape Relates to Dev. Delays; Treatable With Surgery

* Infantile Spasms (Social Symptoms Like Autism) Treatment Outcomes

* Head Circumference In Autism, Asperger Syndrome, and ADHD

* Defining and Quantifying The Social Phenotype In Autism

EDUCATION

* Hawaii Delays Private Contracts For Care Of Autistic Children

* California Autism Program Under Fire

* Readers' Posts

THE RENT

* Supporting the Schafer Autism Report: The Dot Com of Autism Advocacy

CARE

Microsoft Leading The Way In Covering Autism

[by Esteban. Thanks to Roxanne & Ed Przybysz.]

http://www.komotv.com/stories/18714.htm

Autism is no longer a rare disorder -- especially among children.

It beats out Down Syndrome, child deafness and even child cancer. No

one seems to know why more and more children are being diagnosed autistic,

but some think it might have to do with how high-tech their parents are.

Tori Boes is autistic. It took more than four years for her to speak

her first words.

" Red, dog, sink. " As quickly as she's shown a flash card, 9-year-old

Tori responds.

Today her mother, June Boes is doing what she does typically three or

four hours every day with Tori -- practicing communication. This lesson uses

flashcards with words and corresponding pictures.

" What color is a bear? " asks Tori's mom. " Brown Bear, " answers Tori.

" Which one smells pretty? " June asks. " F-f-f-flower, " said Tori.

She has trouble with her 'F's' , so she says it again to make sure

she's understood.

" (Autism) is a development disability that affects your ability to

socially interact with people and also your ability to communicate not just

through spoken language but through non verbal communications, " said Dr.

Geraldine Dawson, Director of the Autism Center at the University of

Washington.

Autism traps children in their own world. Tori has trouble reading

body language, she doesn't know when someone's sad or angry.

Dr. Dawson says that with therapy called Applied Behavioral

Analysis -- or ABA -- the socially withdrawn Toris of the world are breaking

free.

ABA is typically three years of intense one-on-one therapy for up to

40 hours a week.

'She Was Trapped Before The Therapy'

" The research has shown that early intervention is very effective for

many children, " said Dawson.

In a small room with kid-size table and chairs, therapist

McPartland, a grad student and certified ABA therapist at the University of

Washington, is loaded with toys. They're things that might interest Tori

and, at the same time, reinforce eye contact.

The challenge is to teach Tori to interact and read facial cues.

" The ABA is a great thing -- it unlocks your child from the trap

they're in, " said Gene Boes, Tori's dad. " She was trapped in a world of

autism until the therapy. "

Before the therapy five years ago, Tori wasn't able to communicate at

all. Now, although her vocabulary is limited, she is able to tell her

parents what she's thinking and, more importantly, what she needs.

" She has been able to express herself in a way she never was before, "

said her father.

Microsoft Offers Unique Coverage

But, ABA is expensive. On average, three years of therapy costs about

$75,000.

For some families it can be financially impossible.

Unless you work for Microsoft.

" We had some employees come forward and identify a need for us, " said

Mike Cochran, Microsoft's Benefit Manager. " And based on that need, we took

a very close look at this disease and felt it made sense to offer this as a

benefit. "

About 15 employees asked for coverage in 1998 and were determined to

get it. It took time, but in January of 2001, Microsoft offered ABA coverage

to all employees.

" The therapy has significant long-term benefits based on research, "

Cochran said. " When you look at providing the benefit for the longer term it

makes a lot of sense financially. "

Gene is a group product manager at Microsoft. He figures the coverage

saves him $25,000 a year.

" The most important thing it's given me is my family, " he said. " We

didn't have a family life...or the potential considering the working

situation before we had coverage. Both Gene and June worked 40 hours plus

overtime every week to cover Tori's health needs.

'Geek Syndrome'?

The software giant says it started coverage simply because it cares

about employees. But, last year, Wired magazine reported on something it

labeled " Geek Syndrome " - a controversial, and still unproven suggestion

that autism may be in a person's genes.

The theory: that couples who have trouble adjusting socially, but who

are gifted in math and high tech, pass the potential for autism on to their

children.

" I really think there is not much science behind that -- I think it's

more of an observation that someone has made. " said Dr. Dawson.

Cochran agrees.

" We took a long hard look at the incident rate here at Microsoft and

compared that with what's happening across the country and we're not seeing

any higher incidence here at Microsoft, " he said.

The idea behind Geek Syndrome comes from the Silicon Valley. In 1993,

California reportedly had fewer than 5,000 autism cases. Now, on average,

seven new cases are diagnosed everyday -- most of them children.

" We honestly don't know the answer to why the numbers are increasing, "

said Dr. Dawson.

But what Gene and June Boes know is the therapy is working. It has

given Tori a way to break through her silence. Five weeks into ABA and her

first words were 'mommy' and 'daddy.'

" It unlocked her! " said Gene Boes.

Microsoft says it hopes other companies will follow its lead and offer

employees coverage for ABA therapy. The concept was so new, Microsoft had to

rely on the University of Washington Autism Center to help determine

qualifications for coverage and certified therapist.

_______________________________________________________

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* * *

ADVOCACY

Why The ASA Bylaws Should NOT Be Changed

Commentary

Lenny Schafer

Dan Torisky, the Chapter President of the ASA of Pittsburgh expressed

his alarm to me over the phone over the proposed Bylaws Change being voted

on the ballot with the candidates for ASA national board election. " The

Bylaws must not be changed, to do so invites disaster. And we know the ASA

National has been prone to disasters in its history. "

Dan Torisky is a former president of the ASA and was the secretary of

national for nearly twenty years. His argument is simple. The change would

allow items normally voted on separately to be bundled together as a

package. This can be seen as An attempt to manipulate the voting process by

potentially allowing unpopular items to be passed into bylaw by slipping

them in together with popular items. Under the rubric of reform, we instead

get just so much more same old political expediency that breeds contempt.

This proposed short cut in the board voting process short-changes

democracy. It is a way to further distance the input from ASA chapters, who

often find themselves frustrated by the antics of " national " . This change

would leave them with even less influence, less opportunity to debate each

item on its own merit. " Our organization must not allow ourselves to be

turned into somebody's own berry patch, " continued a worried Dan, " this has

been attempted in the past. "

I have to agree. This becomes more unsettling the more I look into

it. I checked the insert that came in the mail with the ballot and the

candidate profiles to see how it's presented. Here is what it says:

RATIONALE:

The board of directors has announced a plan to update and change

the bylaws of AUTISM SOCIETY OF AMERICA, INC., starting with the

board of directors and management reorganization passed in 2001 and

to be voted upon by the membership later this year. In considering

the changes already planned, it was noted that many sections

and articles of the bylaws are interrelated. The existence of the

current provision of the bylaws noted above makes it very difficult

to make appropriate changes due to its restrictive nature.

OK, What's wrong with this picture? There's no counter-argument,

nothing to explain the possible downside to this change. The omission is

serious. It is wrong to use ASA materials for partisan purposes in this

manner. As a member of the ASA, I expect to get an honest presentation of

all the facts coming out this organization no matter the subject, and not

one-sided presentations like this. Is this a glimpse of the kind of reform

to come?

Jeff Sell, ASA board member, candidate whom I endorse, and strong

supporter in favor of the change acknowledges that abuses can happen as a

result. " But we wouldn't have the US Constitution today if everyone then

had to vote on each article of one-by-one. " He argues that having to vote

up or down each bylaw change will stifle the reform process and cause

serious reformers to lose interest. The reform of the bylaws should be

voted on as a package, because the reform effort itself is about making

wholesale changes in the nature of the organization, not just little tweaks

here and there to a patchwork of unworkable, outdated individual bylaws.

I am an ardent supporter of reform of the ASA. All of our children are

vulnerable to the political whims of others, due to the lack of strong

national representation. But reform must come not at the expense of

fairness and democracy. This short cut is not worth it. I urge you to vote

no on changing the bylaws, we can get the reforms we need without it. I only

hope this warning doesn't come too late.

* * *

ART

Images of a Boy's Life

Lloyd Allanson was diagnosed with autism last year His drawings have been

selected for exhibition by his mother Lorene Amet and her partner

Lathe.

[by Mansfield in the Scotsman.]

http://news.scotsman.com/features.cfm?id=601842002

The colourful canvases would not look out of place in a contemporary

art gallery. But Inside Out, an exhibition of paintings and photographs

currently at the Traverse Theatre bar in Edinburgh, is no ordinary art show.

The paintings are the story of a family's struggle to come to terms with

their son's autism, a journey of discovery, creativity and hope.

The paintings are signed simply " Alouette " , named after the French

song which is a favourite of six-year-old Lloyd Allanson. But the work is

the product of a unique family collaboration: Lloyd, who has autism, his

mother, Lorene Amet, and Lorene's partner, Lathe. Lloyd's

meticulously detailed drawings have been developed by Amet and Lathe into

beautiful abstract oil paintings.

" Right from the beginning I was impressed by Lloyd's drawings. I

thought they were beautiful, that they should be shown When Lloyd was

diagnosed with autism a year ago, Amet, who trained as

a research scientist, and Lathe, a geneticist, set out to discover more

about the condition, which is often misunderstood and mistreated. While they

used their skills as scientists to find out more about its causes, Amet also

started to draw on her own artistic background.

" I have always been surrounded by art, " she says. " My mother is an

artist, my brother is an art teacher. Right from the beginning I was

impressed by Lloyd's drawings. I thought they were beautiful, that they

should be shown. I added the colour as a means of helping people to access

the beauty in them. "

As she and Lathe worked on enlarging and colouring the paintings, they

started to become aware of elements in them they had not noticed before.

" As we started to learn more about Lloyd's needs, his drawings made

much more sense. He was drawing images of his need to be covered, to

structure the space around him, " she says.

Some paintings, like Mother and Child, seem to communicate a feeling

of deep security; others, like Someone Met a Cow, contain a fear as deep and

primal as that in Munch's The Scream.

" Through doing this I was getting closer to my son, " says Amet. " The

process of drawing for me was a process of understanding, accepting and

living. I want to contribute to what he has done, raise it to a level people

will see as art. "

She hopes that the exhibition will increase public understanding of

autism, which has increased dramatically in recent years, with around

500,000 children in the UK known to be " on the autistic spectrum " . Little is

known about the causes of the condition, although some parents have linked

it to the controversial MMR vaccine.

Those with autism usually have difficulty communicating and relating

to the world around them, and often display ritualistic, repetitive

behaviour. Amet believes that Lloyd is unable to filter out all the

fast-moving sights and sounds of the modern world in the way that most of us

do without thinking.

" It's like when you're talking to someone on a mobile phone, " she

says. " All the background noise sounds much louder, you can't filter it out.

That is what it is like for him, not just physically but emotionally. The

modern world is overwhelming. I think the pace of life today has a part to

play in why autism is increasing. It's a major issue now in society and we

have to find ways to understand and deal with it, rather than just focusing

on the MMR.

" It is misunderstood a lot, " she says. " I used to be ashamed going

shopping with Lloyd. If he had a tantrum, people would look at me as if they

were wondering why my child was so badly behaved. I just wanted to run

away. "

Lloyd started to show the classic signs of autism last year when he

started primary school. He is now on the Son-Rise Progamme, an intensive

home-based system of learning developed in the United States to help those

with autism. Money raised from the sale of the paintings will help fund this

programme.

The link between creativity and autism is well established. Several

leading artists, including Andy Warhol and LS Lowry, are believed to have

suffered from forms of the condition. Recently, the ish artist

Howson made public that he suffers from Asperger's syndrome, a mild form of

autism.

Like the autistic man portrayed by Hoffman in the film Rain

Man, some of those with autism have extraordinary talents. Autistic artist

Whitehouse, 11, from the West Midlands, has recently started to sell

his intricate drawings through commercial galleries for more than £500 each.

Lorene Amet is planning to organise a conference about autism in

Edinburgh in December, with an accompanying exhibition of artwork by

autistic children. " Although the illness is distressing for families going

through it, there is hope. There is a lot we can learn from it, " she says.

Inside Out is in the theatre bar at the Traverse, Edinburgh, until 8

June. All paintings are for sale, prices negotiable.

* * *

RESEARCH

Persistent Crying In Infancy Tied To Later Problems

[by Alison McCook in Reuters Health.]

http://www.reutershealth.com/cgi-bin/frame2?top=/tops/eline.html & left=/eline

l.html & right=/archive/2002/06/05/eline/links/20020605elin015.html <- -

address ends here.

Children who cry for abnormal periods of time during much of their

infancy are more likely than their peers to exhibit hyperactivity and

academic problems during their middle childhood, researchers report.

Although most children termed persistent criers during their infancy

did not develop behavior problems later in life, they did exhibit an

increased risk relative to their peers, the lead investigator told Reuters

Health.

" Our findings indicate that in those infants who persist in their

crying beyond 4 months of age, and where this is associated with persistent

feeding or sleeping problems, there is an increased risk for

attention/hyperactivity problems, " said Dr. Dieter Wolke of the University

of Hertfordshire, UK.

Infants were considered persistent criers if they regularly cried for

many hours a day, and the period of unexplained crying lasted longer than

the normal colic period for babies, which occurs in the first 3 months of

life. Colicky babies--who can also be fussy and seemingly inconsolable--

have not been found to exhibit any long-term consequences from their early

crying.

All 64 participants who were persistent criers as infants were

diagnosed at an average of 4 months of age, when their parents sought

medical advice for the crying. Wolke and his team then later assessed the

persistent criers for behavior problems when they were between the ages of 8

and 10, and compared them with 64 of their peers.

The investigators surveyed parents, children and teachers to determine

whether the children exhibited hyperactivity disorders or antisocial

behaviors, such as bullying, stealing, and cruelty to animals.

As Wolke and his colleagues report in the June 6th issue of

Pediatrics, 19% of the early criers were hyperactive during their middle

childhood years, relative to only 2% of their peers. In addition, persistent

criers tended to perform worse than their peers in certain academic

subjects, such as English and geography.

Parents of early criers and the children themselves reported that they

exhibited more antisocial behaviors than their peers, but teachers did not

note a difference between the two groups.

In an interview with Reuters Health, Wolke said that the link between

early, persistent crying and later behavior problems is likely due to a

combination of both neurodevelopmental problems and the attitude of

caretakers towards the child.

For example, Wolke explained that infants could possess certain

genetic factors that predispose them to having problems with behavior

control, which could explain both persistent crying and behavior problems.

Persistent crying occurs when the infant is unable to control herself,

Wolke explained, and therefore cannot stop crying or fall asleep unaided.

The baby is also less able to concentrate on stimuli and cannot maintain a

happy state. Similarly, hyperactivity disorders can be linked to a lack of

control, in which a child cannot shut out stimuli and concentrate on

individual tasks, he added.

In addition, Wolke noted that being the parent of a persistent crier

can be quite difficult, and infants can need a lot of extra attention. If

the infant cries for much of its early months, parents may begin to treat

the baby differently, perhaps inducing the infant to eventually adopt

difficult behaviors.

" Families with infants who persist in their excessive crying beyond 3

months of age may require additional support in the form of individually

structured behavioral programs that include very strict routines for the

infant to provide behavioral control the infants find difficult to find

within themselves, " Wolke recommended.

SOURCE: Pediatrics 2002;109:1054-1060.

* * *

Triangular Head Shape Relates to Dev. Delays; Treatable With Surgery

" Mild trigonocephaly with clinical symptoms: analysis of surgical results in

65 patients. "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui

ds=12042920 & dopt=Abstract <- - address ends here.

Shimoji T, Shimabukuro S, Sugama S, Ochiai Y.

Department of Neurosurgery, Okinawa Naha Prefectural Hospital, 1-3-1 Yogi,

Naha City, Okinawa 902-0076, Japan, simoji_takeyosi@...

INTRODUCTION: It has been believed that isolated, mild trigonocephaly

rarely presents with clinical symptoms.

PATIENTS AND METHODS: We diagnosed and operated on 65 patients with

mild trigonocephaly and developmental delay up to July 2000.

There were 47 boys and 18 girls in our series.

All patients had symptoms such as delay in language development,

hyperactivity, autistic tendencies, and motor dysfunctions.

Their facial features were characterized by a metopic ridge, depressed

temples, heel-shaped rather than keel-shaped forehead, and slight

hypotelorism.

The most important physical sign was the palpable metopic ridge.

Most patients did not exhibit any symptoms until they were more than 1

year old.

Fifteen patients showed regression in language acquisition and use.

Three-dimensional computed tomography revealed the metopic ridge,

depressed pterional regions, hypotelorism, and small anterior fossae.

Magnetic resonance imaging was performed on all patients and

demonstrated no abnormal findings in the brain.

Single-photon emission computed tomography (SPECT) was performed on

83% of patients and revealed decreased cerebral blood flow (CBF) in the

frontal lobes of 76% of those patients.

Decompressive cranioplasty of the frontal bone involving the skull

base was performed on all patients.

RESULTS: In most (61 out of 65) patients a degree of postoperative

improvement in clinical symptoms was noted, especially in behavioral

problems.

Postoperative SPECT demonstrated increased CBF in the frontal lobes in

95% of the patients.

CONCLUSION: Based on these results, it can be postulated that mild

trigonocephaly is frequently associated with developmental delays and that

these symptoms can be improved to a certain degree by decompressive

cranioplasty.

PMID: 12042920 [PubMed - in process]

* * *

Infantile Spasms (Social Symptoms Like Autism) Treatment Outcomes

" Developmental outcome with and without successful intervention. "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui

ds=12040897 & dopt=Abstract <- - address ends here.

Caplan R, Siddarth P, Mathern G, Vinters H, Curtiss S, Levitt J, Asarnow R,

Shields WD.

Department of Psychiatry and Biobehavioral Sciences, University of

California, Los Angeles, California 90095, USA.

A review of the literature on the developmental outcome of medically

and surgically treated symptomatic infantile spasms (IS) indicates that poor

seizure control, severe mental retardation, and marked behavioral disorders

are found at long-term outcome of symptomatic IS.

The 2-year outcome findings of the UCLA Pediatric Epilepsy Surgery

Research Group in children with symptomatic infantile spasms and in children

with early onset intractable symptomatic epilepsy other than IS (non-IS)

demonstrate impaired development of cognition, language, and social

communication despite improved seizure control.

The social communication deficits of these children are similar to

those found in autistic children.

Finally, the underlying pathology of the resected brain, rather than

ongoing seizures and seizure type, plays an important role in development of

the remaining brain tissue and the outcome of early onset symptomatic IS and

non-IS.

PMID: 12040897 [PubMed - in process]

* * *

Head Circumference In Autism, Asperger Syndrome, and ADHD:

A comparative study.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui

ds=12033714 & dopt=Abstract <- - address ends here.

Gillberg C, de Souza L.

Department of Psychiatry, St 's Hospital Medical School, London, UK.

ann.nordstrom@...

This study was undertaken to test the hypothesis that children with

autistic spectrum disorders often have macrocephalus, and that those without

comorbid learning disability are most frequently affected.

Fifty consecutive children with Asperger syndrome (45 males, five

females; mean age 9 years, range 1 year 6 months to 16 years) without

indications of underlying medical disorders were matched for birth year and

sex with 50 children (45 males, five females; mean age 6 years 4 months,

range 1 year 4 months to 13 years 11 months) who met criteria for autistic

disorder (a lower-functioning disorder within the autism spectrum) and with

50 children (45 males, five females; mean age 8 years 4 months, range 1 year

6 months to 15 years 5 months) who met criteria for

attention-deficit-hyperactivity disorder.

Birth and neuropsychiatric follow-up records were examined and data

relating to occipitofrontal circumference, weight, and height were detailed.

The group with Asperger syndrome included a subset of individuals with

macrocephalus recorded both at birth and at follow-up after the first year

of life.

Another subgroup developed macrocephalus during early childhood.

Autistic spectrum disorders include a subgroup with macrocephalus

characterized by a relatively high level of functioning and a clinical

presentation most often consistent with a diagnosis of Asperger syndrome.

PMID: 12033714 [PubMed - in process]

* * *

Defining and Quantifying The Social Phenotype In Autism.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui

ds=12042174 & dopt=Abstract <- - address ends here.

Klin A, W, Schultz R, Volkmar F, Cohen D.

OBJECTIVE: Genetic and neurofunctional research in autism has

highlighted the need for improved characterization of the core social

disorder defining the broad spectrum of syndrome manifestations.

METHOD: This article reviews the advantages and limitations of current

methods for the refinement and quantification of this highly heterogeneous

social phenotype.

RESULTS: The study of social visual pursuit by use of eye-tracking

technology is offered as a paradigm for novel tools incorporating these

requirements and as a research effort that builds on the emerging synergy of

different branches of social neuroscience.

CONCLUSIONS: Advances in the area will require increased consideration

of processes underlying experimental results and a closer approximation of

experimental methods to the naturalistic demands inherent in real-life

social situations.

PMID: 12042174 [PubMed - in process]

_______________________________________________________

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* * *

EDUCATION

Hawaii Delays Private Contracts For Care Of Autistic Children

Protests from parents prompt the DOE to reconsider the process

[by Crystal Kua ckua@... .]

http://starbulletin.com/2002/06/04/news/story9.html

Because of protests, the state Department of Education is pulling in

the reins on the awarding of contracts to private agencies that serve

autistic children, the state schools superintendent said.

" The (request for proposals) is no longer valid because we're

withdrawing it, " schools Superintendent Pat Hamamoto said.

That means, at least for now, parents with autistic children will not

see changes in services they currently have.

" This is the right step in the right direction, " said Cook, who

is the parent of an autistic child and the president of the Hawaii Autism

Resource Team.

But the department hopes to put contracted services in place by July

1, 2003, through a new request for proposals that will be issued in the

fall.

Beginning July 1, the Department of Education assumes responsibility

from the Department of Health for delivering services to autistic children

as part of the Felix consent decree, the 1994 court order in a lawsuit aimed

at bringing the state into compliance with federal law.

As part of the autism program's transfer, the department put out a

request for proposals to agencies to provide services to autistic children.

The Department of Education then named the agencies with the winning

proposals to provide contracted services.

Alakai Na Keiki was named to be the primary service provider on Oahu,

in Kona and on Kauai, and Child and Family Services on Maui.

But other agencies filed protests, leaving the resolution of the

awarding of the contract in limbo. Officials would not give the specifics of

the protests.

" Legally, we cannot do anything until the final decision is rendered.

We do not know when a decision would be made, " Hamamoto said. " We didn't

want to disrupt services to children, so the most prudent thing was to

withdraw the RFP. "

Cook said parents continue to have concerns over the autism transition

and the contracting of services.

" Parents will be happy with the services that are provided when there

is full parent participation in the process and the delivery of services, "

Cook said.

Hamamoto, however, said she did not see the letter until after her

decision was made.

Hufano, executive director of Alakai Na Keiki, did not know

about the request for proposals being withdrawn until told by a reporter.

" We're disappointed, " said Hufano. " We did understand we were

successful in obtaining the award. "

Hufano said that even though she does not know the contents of the

protests, she has seen the letter written by the parents of autistic

children, and she believes that their concerns are based on misconceptions

or misunderstanding of the agency's practices.

" I think the major goal of our agency is to provide services, " Hufano

said. " I do believe we provide very good services. "

* * *

California Autism Program Under Fire

[by Herendeen in the Modesto Bee.]

http://www.modbee.com/local/story/3101680p-4107753c.html

Three families who believe an autism program is shortchanging their

children are suing the Stanislaus County Office of Education.

The parents say their children spend less time in school than students

who are not disabled, have a shortened schedule every Tuesday and are given

extra holidays during the year.

They want the court to enforce a reprimand the California Department

of Education handed down in the fall. They also want $50,000 each, so they

can pay for tutoring to make up the lessons their children missed.

" They're losing a lot of time, " said Sacramento attorney Joyce

Carrillo, who filed the discrimination lawsuit May 23 in U.S. District Court

in Fresno. Carrillo filed on behalf of 9-year-old F. from Ceres,

9-year-old R. from Hughson and 11-year-old S. from

Salida. She said the children's names were withheld to protect their

privacy.

Stanislaus County Superintendent of Schools sen said a

problem with shortened Tuesdays was fixed long ago and the other claims are

unfounded.

" We don't discriminate against people with disabilities, " he said.

The Office of Education shortened Tuesday classes for autistic

students in May 2000 to give teachers more planning time.

Officials thought they still were offering enough instruction, but

they included summer sessions when they tallied up the class time. A parent

complained in July, and the state in September said summer school doesn't

count.

Pat Dimond, director of the Stanislaus Special Education Local Plan

Area, said the autism program fixed its schedules in October and offered

parents of 50 children ways to make up for lost class time.

The students still have shortened Tuesdays, she said, but the other

days were lengthened to make up for it. She said all students -- disabled or

not -- receive at least 54,000 minutes of class time a year.

Carrillo said the students continue to be shortchanged. She said

students in Salida attend school from 8:05 a.m. to 2:55 p.m., but an

autistic child from Salida attends a county program from 8:15 a.m. to 1:55

p.m.

sen and Dimond said the state closed its compliance investigation

in November because the matter was resolved.

Carrillo said the state will not enforce its ruling because fines or

sanctions would hurt children in the special education program.

" They know darn well that compliance has no teeth, " Carrillo said.

* * *

Readers' Posts

I'm compiling a list of those people that run support groups, websites, or

group elists in the speech and language area. I will be publishing a book on

late talking sometime next year and am looking for those individuals that

they can send an advance copy to. If you are a professionals that does much

outreach to help others please contact me too!

Geng -lisa@... President CHERAB Foundation Communication Help,

Education, Research, Apraxia Base

******

HFA 11 year old girl has recently developed trichotillomania. Started with

eyebrows/lashes, now spread to scalp hair. She is currently drug free.

Anyone have any success in dealing with this, any method considered. Thank

you, miamishooves@...

******

Children's Resource Center was established in 1981 to help children with

Autism using the remedial arts of music, art, movement, sculpture, puppetry,

drama and massage. We plan to build an alternative medical center for

children next year in sdale, Arizona to provide families with the most

effective medical treatment and therapies available. Also, if anyone has

land they would like to donate to a non-profit, 501©(3) organization on

which to build our multi-plex campus, please contact

Janet@....

******

I am still looking for an ABA specialist to work 2-3 hours a week with my 10

year old autistic son. He currently receives ABA in-school. He needs

additional hours of ABA at home. I live in Staten Island, NY. Nikki at

Niksterc@...

******

I am looking for any info on the Spokane Washington school district. (I

think district 81) I have a LF autistic first grader and we may be

relocating to the Spokane area. rhondad65@...

******

Can anyone recommend a good GFCF protein powder that I can use for my 2 1/2

year old autistic son's shakes? Deborah dgfindley@...

******

I need help finding good therpapists for my 4 year-old son In Woodland

Hills, CA. We are relocating from Chicago. He needs speech, OT and

floortime. amylynnpigott@...

******

Regarding the article on thalidomide and autism, I have an 8 y o with

autism. I personally did not take thalidomide, but my mother did when she

was carrying me. Could my exposure be linked to my son's condition even

though he was not directly exposed to thalidomide? Anyone else have

thalidomide in their family history? Davada Marshall

davye_marshall@...

******

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but posters are obligated to thank all those who take

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THE RENT

Supporting the Schafer Autism Report: The Dot Com of Autism Advocacy

Readers have responded enthusiastically to the new Schafer Autism

Newsletter. Some have wanted to encourage my efforts and have written to

ask if they can make a donation in support. I have been slow in getting back

to them. There is a reason.

Because I am still in the process of establishing my own non-profit

corporation, I have not been able to accept this money. I now have an

interim solution. The Autism Research Institute and its captain, Bernard

Rimland will accept donations on my behalf until my paperwork is finished

and I can do so directly and indecently. So now there is a place to send

your contribution to:

Autism Research Institute

for the Schafer Autism Report

4182 Avenue

San Diego, CA 92116

The ARI's Federal non-profit ID is 952-548-452

Make sure you indicate it is for the Schafer Autism Report.

Supporting the newsletter is one of the finest investments one can

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a measure of progress and hope to every child, adult and family with autism.

It makes a difference, touches lives every day. You can, too with your

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