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SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet" ________________________________________________________________

Tuesday, December 16, 2003 Vol. 7 No. 249

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TREATMENT

* Withdrawn Drug May Close Window of Hope for Kids

PUBLIC HEALTH

* West Virginia to Launch Nation's 1st Registry To Track Autism

* "Drugs Industry is Accused of Putting Wealth Before Health"

MEDIA

* Medics Slam 'Distorted' MMR Drama

* ‘Erin Brocovitch’ of MMR Drama Writes In

* TV Review: Hear the Silence

EDUCATION

* Autistic Student Will Not Return To California School

READERS’ POSTS

TREATMENT

Withdrawn Drug May Close Window of Hope for Kids

=la-headlines-california

Brian Gurwitz has written hundreds of legal briefs in his nine years as an Orange County deputy district attorney, most involving cases on appeal. The name of the game is research, research, research _ and then persuading someone through the power of your argument.

But for the last 18 months or so, he's been moonlighting on the biggest case he'll ever have _ proper treatment for his son, Garrett, who began displaying autistic-like characteristics when he was 1 1/2. However, Gurwitz and his wife, Renee, also a deputy district attorney, refuse to describe their son as autistic.

Therein lies the backdrop for an emerging medical story that, so far, has left the Gurwitzes and other parents in varying states of frustration, anger and _ dare they suggest it? _ cautious optimism.

The parents are largely convinced that, in many cases, what has been diagnosed as autism in their children may be something else _ the product of a class of illnesses or disorders related to a dysfunctional immune system. The handy name is NIDS, which stands for Neuro-Immune Dysfunction Syndrome.

The distinction is hugely important, they say, because it means the difference between doctors and others thinking there's only so much they can do (autistic children are thought to have a largely untreatable developmental disability), as opposed to being able to apply wide-ranging medical treatments with prospects for improvement.

Marc Share heads the NIDS Research Institute, a coalition of parents that formed in Tarzana a few years ago and that now, he says, includes 300 families.

For most of us, the medical issues may be beyond our grasp, but we can understand this: parents' frustration that a drug shown to produce remarkable results has been taken off the market.

Kutapressin, an anti-viral drug that has been around since the 1940s and is made from pig liver, has various uses. In recent years, Share says, a number of children who once would have been thought to be autistic have shown "dramatic improvement" under treatment with Kutapressin, including such breakthroughs as verbal contact and eye contact. About 10 days ago, however, its manufacturer ended months of speculation and pulled the plug, saying its supplier was no longer providing the drug's key ingredient.

Share says he hasn't been able to get more definitive answers from Schwarz Pharma, a company headquartered in the Milwaukee suburb of Mequon. When I inquired, the company affirmed in a fax that it is discontinuing production. The statement said, in part: " & For some time now, Schwarz Pharma, has been working hard to restore the supply of Kutapressin & After months of searching and testing other resources, we regret to say that we have been unable to find a source that duplicates the product specifications of our formula."

A follow-up phone call asking for elaboration was not returned.

Because parents need Schwarz Pharma's expertise if a new manufacturer is to be found (it has been the only manufacturer of Kutapressin), they can't afford to raise the roof, Share suggests. But they aren't happy with the company's decision, and are mystified why it can't round up more pig liver extract.

Gurwitz doesn't consider Kutapressin a magic potion all by itself, but says it undoubtedly spurred improvement in his son, who started taking the drug in April and who turns 3 next month. "We noticed huge gains when he went on it," Gurwitz says. "It kills me to think whether we'd be able to see the same rate of progress if he was still on it."

The search for a Kutapressin replacement has thrust Gurwitz and other parents onto the slow-moving machinery of the American pharmaceutical industry and governmental bureaucracy.

In fact, don't get him started. "There is this perception that these kids have this congenital, hard-wired developmental disability with no prospect of medical treatment," Gurwitz says. "The truth is, the kids who are medically treated can improve to varying degrees. There are some kids who are essentially normalized, others who have made more subtle progress."

Like a lawyer relying on logic and precedent, while trying to keep a father's emotions out of it, Gurwitz insists the answers are already out there. The research is moving in a clear direction, he says.

"I believe beyond a reasonable doubt that a huge percentage of kids who are diagnosed now as autistic are kids suffering from a neuro-immune problem, or an immune dysfunction," he says.

Share, the head of the NIDS Research Institute, sighs and laments the passing of time. "In general, the research world moves very, very slowly," he says. "With developmental things, if something takes five years instead of two, that may be the window of opportunity for hundreds of thousands of kids."

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PUBLIC HEALTH

West Virginia to Launch Nation's First Registry To Track Autism

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South Charleston, W.Va. -- Daniel Ryan, a bright-eyed boy in a red T-shirt, opens his front door with a cheerful smile and then returns quickly to the couch and his pile of favorite photographs.

Nationally, the number of children with autism--a neurological disorder that affects social interaction and communication--has been increasing rapidly. No one knows whether there really are more autistic people or if there is simply improved awareness and diagnoses.

West Virginia is launching an ambitious effort to unravel those mysteries as the nation's first state to establish a registry of residents diagnosed with autism.

Beginning Jan. 1, health care providers who determine a West Virginia resident has autism or a related disorder must report the patient's name, diagnosis, symptoms and related conditions to the registry at Marshall University's Autism Training Center. Even physicians in other states must report on West Virginia residents they diagnose.

"We realized there were no registries in the United States that would be able to track the number of cases of autism year to year," says Barbara Becker-Cottrill, the center's executive director. "We have such a challenging disorder, and we can't even say how many people have this.

"How can we move forward and find the answer of what causes this if we don't know how many people are affected?"

About 1.5 million Americans are believed to have some form of autism, according to the Autism Society of America. While researchers at the federal Centers for Disease Control and Prevention once thought there were four or five cases per 10,000 people, they now put the number at about six per 1,000.

In West Virginia, state education officials say the number of schoolchildren--ages 3 to 21--with autism has increased fivefold in the last nine years, from 108 in 1994 to 508 now.

West Virginia is not the only state to see an increase. A California study earlier this year indicated the number of autistic school children in that state had nearly doubled in the last four years to 20,377.

School-age statistics do not count children under 3 or adults with autism. The West Virginia registry will count all residents diagnosed after Jan. 1.

The information will be confidential, but researchers at Marshall and elsewhere will be able to use it to track potential increases in the number of people diagnosed.

It also could be used to track trends, such as whether there are more cases in one geographic area, in urban or rural settings or if people of a particular race or socio-economic group are more likely to have the condition.

"We want to be a part of finding those answers," Becker-Cottrill says.

Autism is a spectrum disorder, with symptoms and characteristics varying from mild to severe. It is the most common of five Pervasive Developmental Disorders, a category of neurological problems characterized by impairment in several areas of development. The others--which also will be included in the registry--are Asperger's Syndrome, Childhood Disintegrative Disorder, Rett's Disorder and Pervasive Developmental Disorder-Not Otherwise Specified.

The state Legislature authorized the registry in 2000. It has taken three years to establish.

Dr. Marshalyn Yeargin-Allsopp, with the CDC's Center on Birth Defects and Developmental Disabilities, called the registry a significant step because it requires all cases to be reported, and researchers will not have to rely on voluntary reports from doctors and parents.

Mandatory reporting will make research more accurate and eliminate any bias caused by self-reporting.

"That data can be key to early intervention and services, producing lifelong benefits," says Rob Beck, president of the Autism Society of America in Bethesda, Md.

Parents should not fear having their children's names and information on the registry, said Daniel's mother, Lori Ryan.

"I do think if you do nothing else but have your child's name on the registry, I think that's a form of advocacy because you are supporting research that may take place," she said. "You are saying this is a condition that needs to be studied seriously."

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"Drugs Industry is Accused of Putting Wealth Before Health"

The drugs industry is accused today of neglecting groups of patients including children, older people and women in the development of medicines.

A report from the King’s Fund also says that the industry and the Government have put too much focus on developing medicinal drugs to the detriment of other treatments, including alternative remedies.

Last week it was reported that Dr. Allen Roses, vice-president of genetics at GlaxoSmithKline told a scientific meeting in London that less than half of patients taking some prescribed medicines derived benefit from them.

Anthony Harrison, the author of the report, "Getting the Right Medicines?," said the relationship between the industry and government should focus more "on the promotion of health not just the promotion of wealth."

He said yesterday: "For too long the pharmaceutical industry has been in the driving seat of this relationship with the Government acting as a passive purchaser of drugs.

"While this partnership has undoubtedly been an economic success, the interests of patients and the public clearly do not always coincide with what will be most profitable for the pharmaceutical industry."

The report argues that involving the public more in decisions about the direction of future treatments could lead to a change in priorities and may encourage more research into low-risk drugs, self-administered treatments, non-invasive interventions and measures that avoid the need for treatment altogether.

The report calls for a health research and development task force to identify neglected areas.

Rabbi Julia Neuberger, the chief executive of the King’s Fund, said: "We need a relationship that promotes health rather than simply providing drug treatments." However, the pharmaceutical industry defended its position.

"The report says we do not produce enough medicines for women, children and older people," said a spokesman from the Association of the British Pharmaceutical Industry.

"We could point to the development of vaccines that have virtually eradicated many childhood diseases and eliminated polio in this country. For breast cancer there are new drugs, such as taxanes, and many new treatments for osteoporosis and many more in development.

"Older people benefit from the drugs for Alzheimer’s disease and Parkinson’s disease which affect many older people."

The spokesman added: "To the charge that we have created wealth for this country, we plead guilty."

* * *

MEDIA

Medics Slam 'Distorted' MMR Drama

Leading child health experts have called a drama about the MMR vaccine "distorted" and "entirely unbalanced".

Five's Hear My Silence tells the story of a mother whose child has autism which she believes is linked to the measles, mumps and rubella vaccine.

But 11 experts have written an open letter attacking the link made by the drama between MMR and autism.

No research has ever proved a link, and the overwhelming majority of experts believe the vaccine is safe.

The open letter, signed by leading GPs, nurses and paediatricians says the programme presents an "entirely unbalanced" of the work carried out by Dr Andrew Wakefield at the Royal Free Hospital Medical School in the 1990s.

It was that research which led to fears of a link between MMR and autism, although the paper found no direct evidence of a link.

The letter complains that other doctors are portrayed as "baddies" who appear to "positively dislike children".

It adds "the audience is presented with a piece of fiction that could not be further from the truth".

The medics say no evidence has been found for the 'new' forms of autism as described by Dr Wakefield and the drama.

The letter adds: "Over 30 years worldwide use of the combined MMR vaccine has shown it to be extremely safe and highly effective at preventing these three potentially damaging diseases.

"It would be a pity if the desire for 'good' television took precedence over the welfare of children and set this back.

'Talk to your doctor' "Our concern is that because this one-sided and misleading film appears to be a documentary, with some key players and places named, it will have undeserved credibility and inevitably increase the anxieties of parents whose children are due to have the MMR.

"We hope that any adverse effects are minimal and that the film does not persuade any parent to reject the MMR vaccine.

"We recommend that parents who have questions about the MMR vaccine seek advice from their health visitor or general practitioner."

The letter was signed by leading specialists including:- Alan Craft - President, Royal College of Paediatrics and Child Health David Haslam - Chairman, Royal College of General Practitioners Jane Collins - Chief Executive, Great Ormond Street Hospital Carol Black - President, Royal College of Physicians Beverly Malone - General Secretary, Royal College of Nursing Stephen Rooney, a spokesman for the Sense, the national deafblind and rubella association, said: "This drama will only add to the confusion that many parents feel about the vaccine.

"It quite irresponsibly links the rise in diagnosed cases of autism with the introduction of the MMR vaccine in 1988.

"This is despite the fact that extensive research has shown that there is no increased incidence of autism among those children who have had the vaccine compared to those who have not."

He also criticised the drama's star, Juliet Stevenson, for what he described as "irresponsible" remarks in media interviews in which she has called into question the safety of the vaccine.

But a spokesman for Five said the actress had every right to make her views known. She added: "Juliet Stevenson has never claimed to be a medical expert. She is expressing her views as a mother."

And Vernon Beauchamp, chief executive of the National Autistic Society, said: "Hear the Silence is a powerful drama and many of our members will identify with the mother's experiences of isolation when faced with a lack of help and support in achieving diagnosis for her son."

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‘Erin Brocovitch’ of MMR / Hear the Silence Drama Writes In

The content of this programme has been widely discussed in newspapers and airwaves across Britain.

I am utterly dismayed at the personal attacks being launched against Dr Andrew Wakefield, and am writing to publicly support his crucial research.

The obvious defensiveness of the public health authorities and government officials who have aimed their vitriol at Dr Wakefield speaks for itself.

If there were no credence to a potential MMR-Autism link, why would they even give Dr. Wakefield the time of day? I’d like to mention that many of the public health authorities who are bemoaning this programme are the very same ones to whom I have personally written incessantly over the last 6 years, and from whom I have never received a single response, not even to say, "I’m sorry you believe this happened to your child." There have been 2 articles published this week in The Guardian that mention "inaccuracies" in the script written by Timothy Prager.

The source of these accusations hasn’t been publicly revealed.

But the result is that we have a national British daily that has published unattributed quotes, and hasn’t even checked out the supposed inaccuracies.

This is simply unethical, immoral and irresponsible.

Timothy Prager wrote "Hear the Silence" after meeting many families like mine.

Juliet Stevenson’s character, Christine Shields, is an amalgam of the hundreds and thousands of us who have witnessed, with horror, our previously normally-developing child regress into autism.

"Hear the Silence" has a strong message: Why is the medical research simply not being allowed? So I ask, why aren’t the authorities concerned that the incidence of autism is sky-rocketing? The Scotsman published the following quote just this week, on 6 December, 20003: "One primary age child in 49 has been diagnosed with, or is awaiting diagnosis of, autistic spectrum disorder in the Inverness area, according to the survey carried out by the authority’s education department." This statistic is staggering.

I also wish that the authorities would stop saying that regressive autism is not a new phenomenon.

Dr. Bernard Rimland, who runs the Autism Research Institute in San Diego, CA, and who has been compiling statistics on autism for over 40 years, said on July 14, 2002, "Late onset autism, (starting in the 2nd year), was almost unheard of in the ‘50s, ‘60s, and ‘70s; today such cases outnumber early onset cases 5 to 1, the increase paralleling the increase in required vaccines." And if it isn’t MMR, then what is causing this epidemic? I can tell you that the answer is not to be found in the epidemiological, or "statistically" based studies that those in authority purport as the final word.

Parents need to be interviewed and children need to be examined.

In my son’s case, when the team at the Royal Free Hospital conducted biopsies during a colonoscopy, they found something sinister: measles genomic RNA in the walls of his intestine.

Why aren’t the authorities concerned about the presence of vaccination strain measles in some children with autism? Shouldn’t the health of our children, and not political imperatives, come first? Isn’t there enough smoke around this topic to allow parents the choice of single vaccinations rather than forcing them to choose between MMR or nothing? Only when the scientific research is allowed will we know definitively whether MMR causes autism in certain children.

Please know that I am one of thousands of mothers who will not stop being a thorn in the authorities’ sides until this research occurs.

- Kathleen Yazbak Boston, Massachusetts

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TV Review: Hear the Silence

Hear the Silence controversially treated a link between the MMR vaccine and autism as fact, but did that make it a bad drama?

Oliver Stone is going to be really mad if he ever gets to see Hear the Silence (Five). He’ll be kicking himself that he didn’t think of making a film about the MMR controversy first. Hear the Silence was his kind of movie. "This film," said a notice preceding this two-hour-long drama, "is a dramatised account of the work of Dr Andrew Wakefield and his colleagues at the Royal Free Hospital in the late Nineties, and a mother’s search for what happened to her child. Some of the characters have been merged or created for dramatic effect."

Just the kind of dramatic effect, in fact, that Oliver Stone made the trademark of his movie, JFK: never settle for the obvious answer, and if you are not sure whom to blame, then blame everyone. That’s the great thing about a conspiracy, it neatly covers all bases.

Watching Hear the Silence is like looking at one of those paintings in which the artist has covered the entire canvas in white paint; or maybe entirely in black paint. Either way, there are definitely no shades of grey. It treated a link between the MMR vaccine and autism not as a bewitching, largely anecdotal theory which remains unproven, let alone a reckless scare story, but instead as a law of nature, like gravity for example. And this law of nature is ignored only because the unbelievers are mulish, head-in-the-sand flat-earthers, or else because they are protecting their self-interests. In short, an MMR-autism link is granted the authority of a self-evident truth — like, say, the intrinsic rightness of votes for women — and thus becomes something discounted only by fools and knaves. This programme paints the medical profession as both.

In such an atmosphere, the refusal of some doctors to take part in the television debate on Five which followed the film is interpreted as evidence not so much of the medical world’s wariness about discussing a drama as if it were hard fact, but further proof of the medical world’s obstinacy and its masonic tendency to close ranks in the face of criticism. Of course, we all enjoy a pop at the medical establishment, largely because doctors never explain why, when they send us off with a bottle the size of a lipstick to produce a urine sample, it’s so vital that the sample be from "the middle of the stream"; unless, maybe, doctors get their kicks from watching secretly-filmed CCTV footage of patients struggling in tiny cubicles to fulfil this request (you’d bet that this is why the Prince of Wales has his valet hold his sample bottle for him). Even so, doctors will wince at their portrayal here: all, bar Wakefield, are smug, patronising, heartless and deaf to patients’ concerns.

Does all this make Hear the Silence a bad film? No more or no less than it makes a white canvas a bad painting — and you see those hanging in the Tate Modern and along Cork Street in the West End of London. An irresponsible film? Possibly. But since when was it drama’s job to be responsible? Are David Hare’s political plays irresponsible because they beat the drum for only one partisan viewpoint? Or Harold Pinter’s anti-Bush verse? Hear the Silence certainly exploits all its available armoury when assaulting our emotions. It milks our instinctive sympathy for the underdog. Here the underdog is Christine Shields, a bewildered mother who feels that she is battling against the entire medical mafia in her search for truth, and for an explanation of what has triggered her son’s autism: Christine is David to the medical world’s Goliath, and our reflex is to believe that — like David — it is the plucky underdog who is in a tight corner and facing a sea of scepticism from the forces of state authority, who deserves our

trust: at any rate, that’s the way we all used to think until the O. J. Simpson trial came along.

The effect is amplified by casting the wonderful Juliet Stevenson as Shields. Stevenson, when she is truly, madly deeply in full flow, is so persuasive that she could make you believe that Liza Minnelli married David Gest for his looks. As for Wakefield, who better to cast than bumbling, likeable Hugh Bonneville? Wakefield, at least as we see him here, is caring, warm, thoughtful, reasonable, clever, a devoted husband, an ideal father, sceptical, unfanatical, heroic, and morally courageous. Criticising him would be like criticising Neslon Mandela.

Will many people watch this film and change their minds about the safety of the MMR jab? Possibly, if they are dolts who haven’t read a newspaper in the past few years. Those who think the MMR injection is safe have already had their children immunised. Those who don’t have opted for single jabs, or else may be playing roulette with their children’s (and their neighbours’ children’s) health by not having them vaccinated at all. Tony Blair has hardly helped to quell the continuing hullabaloo by not saying whether his son Leo had the MMR jab or not.

If it’s OK for the Prime Minister to fuel the controversy, then why shouldn’t it be OK also for a tautly directed, well-acted television movie, however one-sided? And as long as the teensiest doubt remains, who wants to behave like John Gummer ramming a beefburger down his daughter’s throat on television just to prove that eating British beef was as safe as sleeping. Frankly, you’re happy any time that Five makes headlines with a powerful programme that isn’t controversial in a Keith-Chegwin-baring-his-genitals kind of way.

* * *

EDUCATION

Autistic Student Will Not Return To School

A Santa Clara County judge on Monday barred an autistic Los Altos third-grader from Springer Elementary School until her parents and the district reach an agreement or a state educational hearing in January.

Judge Gregory Ward also removed a temporary restraining order on the girl, which was imposed in November at the district's request. He added a requirement that the family comply with the state's compulsory education law in the interim, but not necessarily in a private room with a one-on-one teacher at Springer -- as the district originally suggested as a temporary option.

Sam Samari said he's pleased his daughter does not have to attend the private classroom, and he'd rather she stay away from her original Springer classroom anyway. The Mercury News is not naming the child to protect her privacy.

"There is no point in sending her back to Springer," Sam Samari said. "She'd be labeled and everyone there will make sure she's not successful." The attorney for the district, Eliza McArthur, said Monday's decision was consistent with the district's position from the beginning.

"We wanted an order that causes them to comply with compulsory education, and that, in the interim, does not bring the child into the regular education classroom," McArthur said.

The Los Altos School District had asked for the temporary restraining order in November when they were unable to agree with the Samari family on the child's educational plan. In the district's suit, they cited examples of aggressive behavior in the classroom and said they feared the girl could harm herself or the other students.

But parents Sam and Cherie Samari feared that isolating the girl until a decision was reached would have exacerbated her behavior, which they said deteriorated because of inadequate support in the classroom. If the right services were in place, she would not have acted aggressively, Sam Samari said.

The student, who has not attended school since Nov. 5, will stay at home until the hearing before the California Special Education Hearing Office in January, which will determine her educational placement. The Samaris plan to hire a private tutor and use the LOVAAS method, a program designed for aggressive intervention for children with autism. At the January meeting, they'll ask the district for reimbursement.

"We don't care how they comply with compulsory education as long as they comply," McArthur said.

Despite the resolution in court Monday, Samari said he's still frustrated with the way the school has been handled the situation, including the student's recent absence from class. They have been refusing to provide her with classroom homework, he said.

"I can tell you that's not true at all," said third-grade teacher Kathleen Panec. "There's a disconnect there." Panec said she has made every effort to provide the child with her work, sending homework to the office daily. In addition, the school arranged a special science project just for her, since the class project required on-site equipment. Often, Panec saw the work collecting in the office when the parents didn't pick it up, she said.

Federal law requires that children with disabilities be educated in the least restrictive environment that meets their needs. At the January meeting, Samari plans to argue that the least restrictive environment could be a private school or the use of additional programs such as Lovaas.

The district and Samari agreed it was unlikely the student will return to her original Springer School classroom.

* * *

READERS’ POSTS

Unlocking Autism introduces our newest autism awareness bracelet- two designs available- 0ne for the ladies, and one for girls and young ladies All proceeds generated through the go to support the Unlocking Autism National Hotline and Resource Center. Visit our website at

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Regarding the story about vaporizing mercury --Has anyone done a study to attempt to establish a link between ASD's and dental work performed on the mother. Mercury was (and may still be) an ingredient in dental fillings. Could these fillings be leaching into the mother's blood system and affecting the fetus? Just a thought, but it might be worthwhile research. Please advise. Thank you. ValkLand@aol.com

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"I will not follow where the path may lead, but I will go where there is no

path, and I will leave a trail." -Muriel Strade Didyouask@aol.com

Charlene Moody

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Has anyone had the experience of filing a Human Rights Complaint against a school district for not providing an advancing academic program over a 3 year period for an autistic child who is not mentally challenged? Or forcing parents into homeschooling through withdrawing services (OT, Speech, Aid time, etc?) causing the child to have to work in a storage room completely isolated from peers, so as not to disrupt the rest of the class with their autistic tendencies? I have a complaint in but wonder how others may have

dealt with this? Kerry Ayotte V4T 1T8 ayottes@telus.net

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Need suggestions for helping my 9 yr old son with HFA find friends. He knows other kids have friends and desires this for himself, but he is too impaired to be appropriate in social settings (bossy, rambles on about obsessions, misses important cues to respond correctly, rages when things don't go as he expects, etc.). I've tried putting a positive spin on autism, he feels like he's "weird and hated". cialdo@aol.com

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[Thanks to Terrie Silverman for compiling these posts.]

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