SCHAFER AUTISM REPORT "Healing Autism:
No Finer a Cause on the Planet"
The Autism Calendar is Out for Dec:
http://www.freewebz.com/schafer/12Cal02.htm________________________________________________________________
December 10, 2002 Promote Your Event - Free! - Send a CALENDAR LISTING:
http://www.freewebz.com/schafer/calendar-form.htm
** MEDIA ALERT CORRECTION **
The deadly dangers of the smallpox vaccine will not be featured on Dan Rather's 60 Minutes II today as reported yesterday.
PUBLIC HEALTH
* Emotional Hearing Renews Vaccine Safety Doubts
* CNN: Burton, ASA Speak Out on Mercury Controversy
COMMENTARY
* Junk Politics and Special Children
RESEARCH
* Hormone's Benefit To Autistic Unproven
* Brain Reaction May Up Anorexia
CARE
* Adults with Autism Internet Resource
EDUCATION
* Inclusion in the Mainstream Is The New Mantra
LETTER
* Holding Out for the Koegels', Language
READERS' POSTS
PUBLIC HEALTH
Emotional Hearing Renews Vaccine Safety Doubts
[It is a curious spin that Reuters puts on this event, judging by their headline for it, above. There is no factual information in the article that supports this claim. Public reaction to the hearing is not even discussed. –LS. By Maggie Fox.]
http://www.kansas.com/mld/kansas/4708824.htmWashington - Members of Congress who doubt the safety of vaccines launched a renewed effort on Tuesday to find a link between diseases such as autism and childhood shots, worrying experts in the field.
Indiana Republican Rep. Dan Burton presided over an often emotional hearing into the alleged vaccine-autism link and railed against a decision in Congress earlier this month that made it harder to sue vaccine makers.
But one member of his own committee attacked Burton's campaign as well-meaning but misguided and said science, not politics, should decide whether vaccines are safe.
Doctors say vaccines may have been the biggest advance in health of the last century, saving millions of lives. But their success has opened the door to questions about safety.
"I am for vaccines, but they need to be tested properly," Burton told House Committee on Government Reform hearing.
Burton, whose grandson is autistic, has held such hearings for years. Many reports have shown no link, including several university-based studies and a 2001 independent Institute of Medicine report saying there was no evidence to show the measles, mumps and rubella, or MMR, vaccine causes autism.
Children are usually diagnosed with autism around age 2, just after they finish their series of vaccines, which has led many people to associate the vaccines with the condition.
And there is no denying that autism has become more common in recent years, with an estimated 1 in 250 U.S. children affected to some degree by the condition, whose symptoms range from mild behavioral issues to a near-complete inability to speak or otherwise communicate.
No one knows what causes autism, but experts note there is a strong genetic component and say the causes are sure to be complex.
Focus On Mercury
The latest focus is on thimerosol, a mercury-based preservative used in vaccines for decades.
It is no longer used in childhood vaccines -- not because it was shown to be harmful but because U.S. government officials and vaccine makers were aware that people believed that mercury may be linked to autism.
In the past month two studies published in the most respected medical journals -- the Lancet and the New England Journal of Medicine -- have shown no link between vaccines and autism. The Lancet study found evidence that children who got vaccines containing thimerosol do not have unsafe levels of mercury in the blood.
Dr. David Baskin, a professor of neurological surgery at Baylor College of Medicine in Houston, told the committee he had doubts about the studies and said he believed the thimerosol in vaccines could cause brain damage.
But California Democrat Henry Waxman, ranking minority member of the committee, noted that Baskin's opinion, and those of other scientists, had been considered by the Institute of Medicine in determining there was no proof of a link.
"This committee, unfortunately, has played a role in sowing confusion," Waxman said, referring to "sensational allegations" and "discredited scientific views."
"Mr. Chairman, I think you have been well-intentioned in your efforts and genuine in your convictions, but often your theories have been just wrong," Waxman added.
But Burton, who thumped his desk and often shouted as he spoke, vowed to continue to press health officials to prove that vaccines do not cause autism or to admit that they do.
"I know you people at HHS (the Health and Human Services Department) and CDC don't like me and I don't give a damn."
Florida Republican Dave Weldon, a medical doctor, acknowledged that health officials fear people will stop vaccinating their children if the safety of immunizations is questioned. But he praised Burton's doggedness.
"We are trying to investigate a sacred cow," Weldon said.
"I don't think parents are that stupid. I think parents will continue to vaccinate their kids."
_______________________________________________________
>> DO SOMETHING ABOUT AUTISM NOW <<
Subscribe, Read, then Forward the Schafer Autism Report.
To Subscribe
http://www.freewebz.com/schafer/SARHome.htmNo Cost!
_______________________________________________________
* * *
CNN: Burton, ASA Speak Out on Mercury Controversy
[This transcript is from CNN "Newsnight Aaron Brown", which ran December 10, 2003.]
BROWN: This is a story we need to approach with a strong dose of caution. It's about a disorder that hits the very young and can devastate entire families. The number of kids getting it is growing fast and there are suspicions among many pearns about what may be behind it.
It's autism and the suspicion is that childhood vaccines may be part of the problem. Now, childhood vaccines had been one of the true wonders of modern medicine, saving literally countless lives. And the suggestion that parents may begin viewing somehow them as dangerous is alarming to the medical community, especially since the consensus at this point is that the research doesn't support the suspicions.
We'll talk with a congressman in a moment who has his own autism story and believes the vaccines need closer scrutiny. First, the science of what we know from CNN medical correspondent Rea Blakey.
(BEGIN VIDEOTAPE)
REA BLAKEY, CNN MEDICAL CORRESPONDENT (voice-over): The controversy centers around a preservative once widely used in vaccines. Called Thimerosal, it contains nearly 50 percent ethyl mercury. Exposures to high levels of mercury can permanently damage the brain and kidneys, causing tremors, attention deficits, and problems with language development and memory.
Can mercury exposure in vaccines also cause autism?
DR. MARK BATSHAW, AUTISM EXPERT: It is known that autism is increasing and everyone wants to know why. And certainly it was not inappropriate to consider immunization as a cause. But it's been considered now and ruled out.
BLAKEY: A Food and Drug Administration review of Thimerosal found no evidence of harm caused by doses in vaccines, except for minor reactions like redness and swelling at the injection site. Yet autism activists remain concerned.
ROBERT BECK, EXECUTIVE DIRECTOR, AUTISM SOCIETY OF AMERICA: But there is no scientific evidence that shows that it's not. So it's a question that still needs to be answered.
BLAKEY: In 2001, the esteemed Institute of Medicine issued the most exhaustive study ever on Thimerosal. The research concluded it's biologically plausible that Thimerosal might cause developmental disorders like autism.
Meanwhile, the IOM report recommended Thimerosal be removed from all vaccines for infants, children and pregnant women.
Except for the flu vaccine, and the one for tetanus diptheria, most vaccines have only trace amounts or none at all.
(on camera): As a result, ethyl mercury levels in routine childhood vaccines have been reduced by 60 percent. So what's the government's recommendation for worried parents? Well, the Centers For Disease Control says there's plenty of preservative-free vaccines. But in cases where those don't exist, vaccines should be given according to the schedule.
BATSHAW: If you compare the risks of autism to the risks of not having immunization, it is much better for you to be immunized.
BLAKEY (voice-over): Each year, millions of American children receive childhood vaccinations. Given that fact, autism activists want more studies on role on Thimerosal might be playing.
Rea Blakey, CNN, Washington.
(END VIDEOTAPE)
BROWN: One Congressman has been pushing hard to look more closely at autism and vaccines. He knows the damage autism can do firsthand. He has an autistic grandchild.
Indiana Republican Dan Burton reopened hearings in the House today and Congressman Burton joins us tonight from Washington. Congressman, it's always good to see you. Thank you.
REP. DAN BURTON (R), INDIANA: Nice seeing you, Aaron.
BROWN: Is your gut telling you anything here, one way or another? I mean, science at this point seems to suggest there is no connection.
BURTON: Well, that's not accurate, Aaron. We have had scientists from around the world and here in the United States who come with very strong evidence that the mercury in some of these vaccines does contribute to the autism in children.
My grandson, whom you mentioned a moment ago, got nine shots in one day, seven of which contained Thimerosal, mercury. And he got about 45 times the amount of mercury in one day that's tolerable in an adult. And he became autistic in just a matter of a couple of days and he hasn't been right since. And he was a perfectly normal child before that.
My granddaughter got a hepatitis B shot that had mercury in it and quit breathing within a matter of hours. We had to rush her to the hospital and fortunately she recovered. And she's been doing well. But she now has grand mal seizures that we believe may have been related to the Thimerosal, the mercury in that vaccine. So, a lot more -- as you said, a lot more needs to be studied. And that's why we've called on president to have a White House conference on this, bringing in all sides of the issue.
BROWN: Well, we hope we do.
Let me ask you -- of a-- this is -- I'll acknowledge a bit tangential to the basic question, but for reasons that are not easily explained to me at least, in the homeland security bill, Lily, who makes some of the vaccines and has some legal issues here, is given essentially a pass in the homeland security bill they're an given immunity to legal action, mostly. How did that happen?
BURTON: Well, that was put in the bill in the dark of night and many pharmaceutical companies that use Thimerosal in their vaccines I think were supportive of that, although they won't publicly say it.
The problem, is there's a three-year limit of -- statute of limitations on people who have damaged children as a result of vaccines. There's what's called a vaccine injury compensation fund. And with that three-year statute of limitations, if their child is believed to have been damaged by vaccines after that three-year period, they have no recourse but to go to the courts.
The language that was put in under the cover of darkness in the homeland security bill, stops even existing lawsuits from going forward, thus taking the ability of these people to get compensation for their damaged children from vaccines ever getting it. And that's a tragic thing because many of these people had to sell their homes. They have to live with these kids. It's just tragic. And they have nowhere to go.
BROWN: Who put that in -- in the bill?
BURTON: I talked to Dick Armey, who was the head of the subcommittee or the leadership committee that finalized the homeland security bill. He said it was put in at the request of the White House.
He also said the committee of jurisdiction was contacted about this amendment, which is not the case because my committee was the primary committee of jurisdiction and we knew nothing about it.
BROWN: White house, as you know -- I know you know this -- denies it had anything to do with it. White House says it didn't have anything to do with it. The committee apparently didn't have anything to do with it. No one's taking responsibility for this. Did members, particularly in the House -- did members in the house know this was in that bill when they voted on homeland security?
BURTON: Nobody knew about it except the people that put it in. And it didn't just fall from the sky. It wasn't an accident that it was put in that bill. It was done deliberately to protect pharmaceutical companies from lawsuits that might originate from these vaccines. Now, the fact of the matter is, I don't mind if we have a vaccination compensation fund that's fair and equitable to these people and gives them compensation without a lot of legal maneuvering. If we can come to that -- get that resolved.
But the fact is, these parents don't have any place to go except to the legal system, many of them, thousands of them. And it's wrong, if they've been damaged by vaccines, not to give them any avenue of hope.
BROWN: I'm going to bring us back in our last half minute to the central question. Where do your hearings go next?
BURTON: Well, we intend to continue to press for information concerning this issue from the pharmaceutical companies. I have subpoenaed documents that go all the way back to the '30s to find out if this stuff has ever been tested.
Thimerosal, to my knowledge and through our research, has never been tested by the FDA or the pharmaceutical companies. The only time it was ever tested, it was tested in 1929 on 27 people who were dying from meningitis. All of them died but they said it was not as a result of the Thimerosal given to them, so they've been putting it in vaccines ever since. That's just wrong.
BROWN: Congressman, we look forward to -- thank you. We look forward to the hearings. And you're updating us on them. Thank you very much. Congressman Dan Burton tonight.
BURTON: Thank you, Aaron.
* * *
COMMENTARY
Junk Politics and Special Children
Having inserted pharmaceutical "liability protections" in the Homeland Security bill, the Republicans now have to face their toughest opponent yet: Parents
[By Steven C. Day, who is an attorney practicing in Wichita, Kansas.]
http://www.poppolitics.com/articles/2002-12-10-homelandsecurity.shtmlOnly 3 years old, and already my son’s a lady killer, an absolute knockout; smart, loving, rambunctious and Guinness Book of World Records level cute, flashing the biggest blue eyes this side of Frank Sinatra.
Eight months ago, he joined the growing epidemic of children diagnosed with autism.
The word still numbs me. Maybe we should have seen the diagnosis coming, but we didn’t. He has always been such a bright kid, exceptional in some ways. Delays in speech development didn’t seem that alarming. Everyone who knows him, including his pediatrician, was convinced that there was nothing seriously wrong. "It just sometimes takes longer with boys," they all said.
So there we were, my wife and I, surrounded by the evaluation team -- speech, occupational and physical therapists, a pediatric psychologist and a developmental pediatrician -- waiting to be told that everything was fine. Except it wasn’t.
The Light of Day
There’s no way to sugarcoat it. Autism is a devastating diagnosis. Approximately 70 to 75 percent of autistic individuals have some degree of mental retardation (50 percent are profoundly limited, with IQs below 50); many never learn to speak, and only about 5 percent are able to live independently as adults. All victims of autism, regardless of their level of functioning, have profound problems relating to other people.
The outlook is brightest for those like my son who are classified as high functioning (my son is so high functioning, in fact, that we still harbor some doubts about the correctness of the diagnosis). This generally implies normal or above normal intelligence. But even this group faces extraordinary challenges. To be sure, there have been some inspiring success stories, like Temple Grandin, a professor at Colorado State University, who despite having autism became an internationally renowned expert on the humane handling of livestock. But such cases are the exception.
Most adults with this level of autism still have great difficultly fitting into the practical world. They have trouble getting and keeping work and are chronically "underemployed" when they do find a job. They also have problems forming and maintaining relationships and tend to lead lives of relative isolation. Even at its best, the diagnosis is a bleak one.
A parent’s response is likely to be one of overwhelming grief. It certainly was for us. As I think about it, though, grief is actually a funny word to use in this context since it usually implies that you’ve suffered a great loss. The son I hugged the night following his diagnosis was the same wonderful kid I had hugged earlier that morning.
From his perspective, nothing had changed. But from our perspective, as his parents, everything had. Suddenly, the future we had imagined for him was gone, swept away by a one-word typhoon. Everything that had once seemed certain and settled was now in doubt and the landscape ahead looked harsh and unjust.
It all seems so unfair. It’s unfair that while other 3-year-old kids get to play, our son has to go to therapy sessions, often kicking and screaming. It’s unfair that despite his obvious brightness, school will probably always be hard for him. It’s unfair that he will likely be picked on as a child (autistic children, because of their behavioral oddities, are obvious targets of children’s cruelty). Above all, it’s unfair that his future, which should be limitless, is instead clouded.
Along with this profound sense of unfairness comes an equally profound commitment to do whatever it takes to make certain that your child is treated fairly in the future. And it is this commitment, as much as concern over compensation, that explains the extraordinary degree of outrage felt by families of autistic children over the recent Homeland Security legislation.
The basic story is now well known. Flush from their victory in the off-year elections, the Republican leadership couldn’t resist the urge to load up the Homeland Security bill with giveaways to major campaign contributors. This pork barrel was added secretly and late in the legislative process, without the knowledge of many members of the House.
Probably the most controversial addition was a package of "liability protections" for the pharmaceutical industry. This included a provision specifically designed to get Eli Lilly off the hook in a number of currently pending lawsuits involving claims that high concentrations of mercury contained in thimerosal, a preservative once used in the measles-mumps-rubella (MMR) vaccine, caused some children to develop autism.
Under the new law, such claims must now first be submitted to a special federal "vaccine court." Any compensation paid by the vaccine court comes not from the drug company itself, but from a special excise tax on vaccines. The amount that can be awarded is subject to strict limits. If a family loses or is otherwise dissatisfied with the outcome before the vaccine court, they are free to then file a lawsuit against the manufacturer in regular court. Obviously, this process can cause considerable delay.
The most appalling aspect of the legislation, aside from the slimy way it was adopted, is the fact it was made retroactive. This means that numerous pending lawsuits will likely be dismissed, forcing families to go back to square one. Also, because of the statute of limitations, some of the victims may be unable to file a claim before the vaccine court. In other words, baring some additional Congressional action, they may simply be out of luck.
There is something fundamentally wrong here. Inherent in traditional American notions of due process and fair play is the belief that legal disputes are to be resolved in courts of law, based upon the evidence, not on the basis of some back room political pay-off. Article continues:
http://www.poppolitics.com/articles/2002-12-10-homelandsecurity.shtml* * *
RESEARCH
Hormone's Benefit To Autistic Unproven
Inconclusive study setback for parents
[By Earl Lane.]
http://rc.newsday.com/news/health/ny-dstop3039535dec10,0,7987205.story?coll=ny-health-headlines <- - address ends here.
The latest study on secretin, touted a few years ago as a possible cure for autism, has failed to show that the digestive hormone has any significant impact on the disorder.
The new study by researchers at the University of Washington and the University of Colorado is another setback for parents whose hopes were raised by a 1998 study reporting marked improvement in the behavior of three young boys with autism after they received a slow injection of secretin as part of a diagnostic procedure for digestive problems.
The striking improvements in behavior and language skills, widely publicized in the media, prompted a rush by parents anxious to try anything that might benefit their autistic children. In some cases, they were willing to pay hundreds of dollars to obtain a single infusion of the hormone.
"We looked at the initial claim that even one dose could have some effect," said Geraldine Dawson, a University of Washington psychologist and director of the school's Autism Center. She said the joint study with researchers at the University of Colorado Health Sciences Center found no evidence that use of the hormone reduced the symptoms of autism any more effectively than injection of a placebo.
The study was published in the November issue of the Journal of the American Academy of Child Adolescent Psychiatry. The research, which involved 85 children between the ages of 3 and 12, is consistent with several studies that have shown little or no evidence of benefit by secretin.
"It hasn't been the world-beater that it was described to be," said Dr. Karin B. Nelson of the neuroepidemiology branch at the National Institute of Neurological Disorders and Stroke, one of several federal agencies that have sponsored research on secretin.
But proponents note that additional studies still under way could yet demonstrate secretin's value for subgroups of autistic children, such as those younger than age 6. The ongoing studies also feature multiple infusions of the hormone during a period of months rather than the single intravenous dose used in the Washington-Colorado study and others.
"The current data suggest that if there is a benefit [of secretin], it is with certain age groups and the benefits seem to be noticed only with serial infusions," said Dr. Andrew Adesman, director of developmental and behavioral pediatrics at Schneider Children's Hospital in New Hyde Park. Adesman is recruiting 20 children for a secretin study sponsored by Repligen, the Massachusetts-based manufacturer of a synthetic version of the digestive hormone. The Long Island study is part of a national clinical trial involving 200 children in all, ages 32 months to 59 months. A second Repligen-sponsored study is recruiting another 200 children.
Autism is a developmental disorder that interferes with a child's ability to communicate and relate socially to others, and includes attention problems and hyperactivity. Scientists do not know the cause of the disorder , which affects a million or more people in the United States by one estimate. While researchers continue to pursue the fundamental causes of the complex disorder, including possible genetic factors, caregivers for those with autism face more immediate challenges and are looking for treatments that work.
"There are a number of people in the autism community who still believe secretin is an appropriate treatment for their children," said Lee Grossman, the parent of an autistic boy and president of the Autism Society of America, an advocacy group with offices in Bethesda, Md. "Some people are still reporting improvements in their child."
+ Article continues:
http://rc.newsday.com/news/health/ny-dstop3039535dec10,0,7987205.story?coll=ny-health-headlines <- - address ends here.
* * *
Brain Reaction May Up Anorexia
Immune attack could cripple appetite control. Around 1 in 200 anorexics die each year.
[By Helen Pearson. The immune theory of anorexia is similar in part to the immune theory of autism.]
http://www.nature.com/nsu/021209/021209-3.htmlSome eating disorders could involve the body's immune system rounding on the brain, Swedish researchers are proposing.
Three-quarters of the anorexic and bulimic women studied by Serguei Fetissov of the Karolinska Institute in Stockholm carry blood antibodies targeted against appetite centres in the brain, he finds. Just 16% of those without eating disorders have such antibodies 1.
The antibodies may stop nerves responding to hormones that control hunger, Fetissov says, and so contribute to eating problems. If the idea proves to be correct, suppressing the aberrant molecules might treat the disease; diagnosis could also be improved on the basis of the presence of the antibodies.
Neuroscientist James McNamara of Duke University Medical Center in Durham, North Carolina, agrees that the hypothesis is plausible. "It's easy to imagine you could mount an attack on a specific population of neurons," he says.
McNamara and others have evidence that some cases of epilepsy and of the sleep disorder narcolepsy might also be attributed to wrongly aimed antibodies. "My suspicion is that a subset of many common nervous-system disorders could be auto-immune in nature," he says.
+ Article continues:
http://www.nature.com/nsu/021209/021209-3.html* * *
CARE
Adults with Autism Internet Resource
[From the CAN-Alert newsletter.]
Unlocking Autism has realized for quite some time that there was a tremendous need for networking and support in the adult and teen community. We have received enormous numbers of emails from parents and caregivers in the last few months and have tried to put them in touch with UA State Representatives that have experience in that arena. We realize that more support is needed.
Unlocking Autism and the UA State Representatives, under the leadership of Rick and Jane Tallman of New Jersey will activate a new listserv this week that will connect the many resources of UA Reps as well as parents around the country.
If you are a parent of a teen or adult on the spectrum or if you are an adult on the spectrum who would be interested in joining the UA-ADULTS-WITH-AUTISM listserv, simply go the Unlocking Autism website
http://www.UnlockingAutism.org and look under Breaking News to find the introduction. Click there and your email will be sent to Rick Tallman, who will then invite you to the listserv.We are using the "invitation only policy" in an effort to keep the listserv what it is intended to be; adults sharing information in the most useful and responsible way possible.
We truly hope that this will be a blessing to all those involved.
_______________________________________________________
>> DO SOMETHING ABOUT AUTISM NOW <<
Subscribe, Read, then Forward the Schafer Autism Report.
To Subscribe
http://www.freewebz.com/schafer/SARHome.htmNo Cost!
_______________________________________________________
* * *
EDUCATION
Inclusion in the Mainstream Is The New Mantra
But autism is more than a learning difficulty, it's a way of being
[By Charlotte Moore in The Guardian, UK.]
http://www.guardian.co.uk/parents/story/0,3605,857586,00.htmlI have just been to Sam's annual review. If you have a child with a statement of special educational need, you have a yearly meeting with the head, the class teacher, someone from the local authority, and other interested parties (speech therapist, social worker, educational psychologist... ). Together, you decide whether the wording of the statement still applies, and whether your child is being educated in the right place. This year's review was particularly important because Sam is in year six. Next September, he must start at secondary school.
Sam is in an ASD [autistic spectrum disorder] facility attached to a special-needs primary school. There are eight boys in the unit, no girls, two job-sharing teachers, and four general assistants. There is a speech therapist, and extra helpers for activities like swimming and music. It sounds like a lot of staff, but, believe me, they are all needed. Autistic children only learn one-to-one. Class teaching doesn't work. And if - as often happens - one child throws a wobbly and mops up the attention of three or four members of staff, the remaining seven children are pretty much all at sea.
Sam has a "severe autistic impairment". He also has "severe learning difficulties". To me, the autism is by far the greater problem. There is an excellent local school for children with severe learning difficulties, but I don't want Sam to go there because I believe his school environment should be wholly attuned to the needs of autism, and that he should be managed by staff who really understand the condition. I want him to go to the ASD facility attended by his older brother, George; it is a very similar set-up to his present school, but for children of 11 and up.
Why am I so set on an autistic environment for Sam? Doesn't being with other autists intensify his "challenging" behaviour? Would he benefit from being in a class with non-autistic children? Should he be in a school which specifically caters for his apparently low IQ? No, no and no. A central characteristic of autism is the lack of imitative behaviour. One autistic child will only pick up "bad habits" from another in the most transient, superficial way. Sam just might imitate, say, Joe's peculiar high-pitched hoot for a few days, but he doesn't think "Ah, Joe uses that noise to get out of swimming so if I hoot I'll get out of swimming too". Sam cannot think that way because he cannot put himself into someone else's shoes. He has no "theory of mind".
By the same token, Sam would not learn "normal" habits through contact with non-autistic children. Most children, even those with intellectual impairments, are profoundly social beings. They sort out their group dynamics through observation and imitation. Sam is not a social being. He prefers some adults to others, but has no concept of friendship. He is indifferent to what other children do. He has a reduced sense of his own identity. I showed him a photograph of Ian, our nanny, holding him. In the picture, Sam was wearing a red jumper. "What is Ian doing?" I asked. "Ian holding red jumper," Sam replied. Never mind that there was a Sam inside it.
What about Sam's "severe" intellectual impairment? Why do I regard addressing his autism as the priority? Well, for a start, the autism makes an accurate assessment of his abilities very difficult. I have no doubt that Sam has learning difficulties. I also have no doubt that, like most autistic children, he is cleverer than he can or will show us. Another autistic trait, particularly marked in Sam's case, is lack of motivation. Sam wants to be left alone; he is not concerned with showing us what he can do. He has no intellectual curiosity, no goals beyond unlocking the cupboard and taking out the sweet tin. The core of any educational programme for Sam has to be to find a way of galvanising him. Indifference, not IQ, is the main issue.
The present government favours a policy of "inclusion in mainstream wherever possible". Special schools and units are being closed up and down the country. In the case of autism, this policy is idiotic and harmful. Both George and Sam have special needs - the needs of an autistic child. The overlap between their requirements and those of a normal 11- or 12-year-old scarcely exists.
* * *
LETTER
Holding Out for the Koegels', Language
Thanks for the update on the status of the Koegels' grant. I remember sending a letter some time ago to NIH on this issue as a result of your campaign. It's good to know the Koegels will get the funding they need to continue their work. We visited their clinic at UCSB for a week of intensive training when my boys were almost 4 years old, and I continue to maintain contact will Bill Frea at Cal State LA, who was a grad student at the time and spent a week in a room with me and my son, Scott.
In a nutshell, they taught my husband and I to "hold out" for language on anything my guys want and to set up lots of opportunities for wants. At the time, the prognosis was "possible language" for one of the boys, and not much likelihood with the other. My boys are verbal today (not highly, but enough to express their basic needs and desires in complete, understandable sentences). Patrick, whose prognosis was not positive even in the Koegels' estimation, is the bigger "talker" today. I'm hopeful that the Koegels will continue to receive funding for many years to assure that kids like mine are able to make substantial progress. You do good work.
- Lisa Sostack
* * *
READERS' POSTS
My autistic child was born in December,1987. He was fine, yet after his MMR, started the behaviors that pointed to autism. Before changing, he was smiling into the camera any time a picture was pointed in his direction. Is there any group that can help fight for benefits for older affected children? Paula at pjmax@ezmailbox.net
******
Seeking Philadelphia metropolitan area parents who are currently homeschooling or are considering homeschooling their Asperger's Syndrome
child(ren) (ages 11 - 14, secular focus). Would like to connect if you are doing so independently or would be interested in cooperative learning opportunities. Exploring the options. Contact baboo2191@yahoo.com.
******
Have a child with food allergies? Then this is the perfect shirt for you! Youth sizes 2/4, 6/8, 10/12 and 14/16. Price is $12.00 each.
http://www.geocities.com/ARNFL/pinsnsticker.html******
A new Institute of Medicine Committee on Smallpox Vaccination Program Implementation to advise the CDC on selected aspects of pre-event smallpox vaccination program implementation (see the project website at
http://www.iom.edu/smallpox for details, agenda, and registrationinformation) will hold its first open meeting December 19 at which representatives from DHHS, CDC, and DOD will make presentations on various components of the vaccination program. The meeting will begin at 8:00 am and run until 5:45 pm. Room 100 of The National Academies, 500 Fifth Street, NW, Washington DC. You are invited, please register at website. Nicole Amado namado@nas.edu
******
Unlocking Autism's first website was
www.littleangels.org. When we launched the Open Your Eyes project, everyone reviewing the pictures kept telling us... "They all look like little angels." Kimberly West, an ABA therapist from Baton Rouge, LA, has designed a special pin this holiday season that can be worn with pride throughout the year on your lapel to help you show off your little angel. You can even coordinate the color with your child's birthstone. Visit UA Gear and Projects sections at www.unlockingautism.org.******
FOR MORE READERS' POSTS:
http://www.freewebz.com/schafer/readpostarch.htm******
>> FREE (Almost) READERS' POSTS <<
For Individuals, organizations, non-commercial and
commercial. Limit your posting to no more than 60
words please. There is no charge for this service,
but posters are obligated to thank all those who take
the time to answer your ads. This is a consideration
for others with autism after you and yours, who seek
assistance from appreciated readers. Send submissions to:
READERS' POSTS:
http://www.freewebz.com/schafer/postsc.htm
------------------------------------------------
SAR Autism Resources
* The Autism Calendar: Subscribe (without daily reports)
http://www1.freewebs.com/schafer/Ripform.htmTo List an event in Calendar:
http://www.freewebz.com/schafer/calendar-form.htm* The Schafer Autism Report: Subscribe (includes events calendar)
http://www.freewebz.com/schafer/SARHome.htmSubscription type: Schafer Autism Report
* Free Readers' Posts
http://www.freewebz.com/schafer/postsc.htm* News Archive – Autism Database
http://groups.yahoo.com/group/-AuTeach/messages
_________________________________________________________________
Lenny Schafer, schafer@sprynet.com Kay Stammers Edward Decelie
CALENDAR EVENTS@doitnow.com Michelle Guppy Ron Sleith
++ To Unsubscribe, Send an email to unsubscribe@doitnow.com ++
ALL INFORMATION, DATA, AND
MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION
PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS
OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR
LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND
COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH
YOUR HEALTH CARE PROVIDER.