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SCHAFER AUTISM REPORT "Healing Autism:

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COMMENTARY

* A Mysterious Upsurge in Autism: NY Time Editorial

* Quotes From Newspapers Around the Country

PUBLIC HEALTH

* COMMENTARY: The Bungling FDA

* Court Strikes Down FDA Rule

* Study of Californians Records Elevated Mercury Levels in Fish Consumers

TREATMETN

* Unlocking the Mysteries Of Autism

ADVOCACY

* Principle Guides A Mother's Battle

AWARENESS

* When the Press Gets Mean

FUNDRAISING

* Burkhart Tech Donation To Aid In Teaching Of Autistic Children

AWARDS

* Rollens to Receive Parent Leadership Award

 

COMMENTARY

A Mysterious Upsurge in Autism: NY Time Editorial

[Thanks to emaurine.] http://www.nytimes.com/2002/10/20/opinion/20SUN3.html?ex=1036164871&ei=1&en=

13b43bd6ce54110f <- - address ends here.

A shocking report from California last week suggested that a large increase in childhood autism in that state over the last 15 years is a true epidemic, not a statistical mirage inflated by artificial factors. If that judgment holds up after further analysis and research, it raises disturbing questions about just why this brain-distorting disease is on the rise and what can be done about it.

Experts have known for some time that there seemed to be a big upsurge in autism in California — a tripling in little more than a decade of the number of children with profound autism receiving services from the state. The state's Department of Developmental Services found that the number of children with "full spectrum" autism jumped from 2,778 in 1987 to 10,360 in 1998 and continued to rise thereafter. That was bad news indeed given that autism is a crippling brain disorder that often leaves its victims unable to speak, rocking compulsively, and unable to form social relationships or behave normally in everyday life.

Last week's report, commissioned by the California Legislature and conducted by researchers at the University of California at Davis, concluded that the upsurge could not be explained away by demographics, changes in the way autism is diagnosed or increased migration of autistic children into California. But whether the study looked hard enough for all possible explanations will need to be addressed when outside experts have a chance to review the findings. One possible weakness is that the study dealt only with autistic children receiving services from the state's regional centers. It did not examine whether parents and professionals are referring more children with autism to the centers today than in the past.

California's self-examination has underscored the surprising lack of information about the prevalence of this relatively rare brain disorder elsewhere in the nation. Studies carried out by the federal Centers for Disease Control and Prevention in recent years found that the number of cases in metropolitan Atlanta and in one New Jersey township were significantly higher than previous estimates of prevalence would suggest. But nobody knows for sure what the nationwide trends are. The C.D.C. is financing studies in a dozen other states to determine the prevalence there.

Virtually all experts agree that genetics play an important role in autism, but genes don't propagate fast enough to cause a sharp change in a decade. Some experts believe that environmental factors can trigger autism in people with susceptible genes, with suspicion falling at various times on vaccines, infections, heavy metals and other environmental insults. The evidence, unfortunately, is sparse. It could take years of study to unravel the widening mystery of autism.

* * *

>From Newspapers Around the Country

The following are quotations taken from the articles in major publications reporting on the MIND Institute's Autism-Growth-Is-Real report that made major news last week.

"Dr. Catherine Lord, a professor of psychology and psychiatry at the University of Michigan who is a leading authority on autism, said it was unclear whether the California findings applied to other states." NY Times http://www.nytimes.com/2002/10/18/health/18AUTI.html

"'We sense there has been a real increase, but like everyone else, we don't know why, and I don't think this finding is isolated to California,' said Margaret Whelan, executive director of the Geneva Centre for Autism in Toronto." The Toronto Globe and Mail http://www.globeandmail.com/servlet/GIS.Servlets.HTMLTemplate?tf=tgam/common

/SearchFullStoryPrint.html&cf=tgam/common/GenericSearch.cfg&configFileLoc=tg

am/config&encoded_keywords=autism&option=&current_row=5&start_row=5&num_rows

=1&search_results_start=1 <- - address ends here.

"'The California study is the first to look at questions of misdiagnosis, migration or increased awareness as explanations for the rise,' said Dr Fiona Scott of the Autism Research Centre at Cambridge University. 'Some scientists are now thinking that we could be born with a genetic susceptibility that can be triggered. Nobody knows what that trigger could be.' She added: 'We need to get a clearer picture of what is going on because we don't know for sure what the rates of autism are.'" The Independent, UK http://news.independent.co.uk/world/science_medical/story.jsp?story=344227

"Dana Wisdom, whose 5-year-old son, Chandler, is autistic, said that in the meantime, efforts must be stepped up to help families, schools and care providers cope with the unprecedented numbers of children living with autism.

'We have a huge wave of children already diagnosed,' she said. 'If we do not help these children learn and to learn how to be self-sufficient, it is going to have a huge impact on society.'" Sacramento Bee http://www.sacbee.com/content/news/story/4841807p-5855120c.html

"The surge in cases forced the department to seek additional funding of $17.2 million this year to treat all of them, according to Cliff Allenby, director of the Department of Developmental Services. 'This is really straining our resources,' he said. California has been particularly affected by the epidemic because it is required by state law to provide services to any resident diagnosed with autism or other mental disorders, Allenby said." LA Times http://www.latimes.com/news/printedition/la-me-autism18oct18004444.story

"State Sen. John Burton, D-San Francisco, who pushed for legislation authorizing the study, said it adds urgency to the search for a cause. 'There is more awareness, more people acknowledging it,' he said. 'We've come a long way toward recognition, but this study shows there is an awful lot of work and research that has to be done.'" SF Chronicle's SFGate.com http://sfgate.com/cgi-bin/article.cgi?file=/c/a/2002/10/18/MN176745.DTL

Copies of all news releases from UC Davis Health System are available on the Web at http://news.ucdmc.ucdavis.edu

Additional information available on these Web sites: Report to the Legislature at <http://www.mindinstitute.org> Statistics of children entering the state Regional Center system at http://news.ucdmc.ucdavis.edu/DDS_stats.html

1999 autism report at http://www.dds.ca.gov/Autism/pdf/Autism_Report_1999.PDF.

Robert Byrd's biography at http://news.ucdmc.ucdavis.edu/byrd_bio.html

 

 

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* * *

PUBLIC HEALTH

The Bungling FDA

The Agency Seizes Taurine Capsules Sold For Autism And Finally Admits To Its Major Life-Threatening Screw-Up On Anthrax Vaccine

[By Nicholas Regush.] http://www.redflagsweekly.com/second_opinion/2002_oct21.html

The FDA needs to be re-worked from the ground up. The agency is a disaster and there is no end in sight to its steady decline. Frankly, there are far too many apologists for the FDA - many academic types and weak politicians who don’t like to get too vocal - and not enough strong venom being unleashed about the way this teeter-tottering fool of an organization is going about its business.

Consider the FDA’s latest bungle: the seizure of dietary supplements, namely taurine. At the agency’s request, US Marshals seized hundreds of bottles of Kirkman’s HypoAllergenic Taurine Capsules at Kirkman Laboratories of Lake Oswego, Oregon.

I’m sure this made some of the boffo bigwigs at the FDA think they were actually running an agency that protects the public.

If the FDA thought that these taurine capsules, used by many doctors and parents as part of a dietary approach to autism, were being touted too boldly as a treatment, they could have approached the issue with much less than a big club.

+ Commentary continues at:

http://www.redflagsweekly.com/second_opinion/2002_oct21.html

* * *

Court Strikes Down FDA Rule

[By Marc Kaufman in the Washington Post.] http://www.washingtonpost.com/wp-dyn/articles/A46455-2002Oct18.html

A federal District Court struck down the Food and Drug Administration's Pediatric Rule last night, saying that the agency did not have the authority to require drug makers to test some of their products for childhood use.

The rule, promulgated by the FDA in 1998, has generally been accepted by the pharmaceutical industry, and the number of drugs tested for childhood use has been rising. It has been considered a major achievement by the FDA and public health advocates, who were sharply critical of the court's ruling.

Before the implementation of the rule, most drugs seeking government approval were tested on adults only. Physicians would come to use some of those medicines on children based on medical experience and subsequent studies that might show dosages appropriate for children. Because that use for children was never formally approved by the FDA, it was considered an off-label use, much like some drugs that have been approved for fight a specific disease can later be used on other ailments, even though the government agency has never specifically approved them for that second use.

But several groups, including the Competitive Enterprise Institute and the Association of American Physicians and Surgeons, sued the FDA to overturn the Pediatric Rule, arguing that it improperly expanded the agency's authority because it opened the door to greater oversight of "off label" uses of drugs. And in his decision, U.S. District Court Judge Henry H. Kennedy Jr., of the federal court for the District of Columbia, agreed.

"The Pediatric Rule may well be a better policy tool than the one enacted by Congress (which encourages testing for pediatric use, but does not require it)," Kennedy wrote. "It might reflect the most thoughtful, reasoned, balanced solution to a vexing public health problem. The issue here is not the Rule's wisdom. . . . The issue is the Rule's statutory authority, and it is this that the court finds wanting."

Lawrence Bachorik, spokesman for the FDA, said that "the FDA is very disappointed that the court struck down the Pediatric Rule. We still think it is vitally important that drugs be studied in children so that their safety and efficacy can be determined on the basis of sound data, and so they can be properly labelled for use in children." He said the agency is "weighing its options" on how to proceed.

Sam Kazman, CEI's general counsel, welcomed the decision.

"In our view, the Pediatric Rule constituted a drastic change in the drug approval process," he said. FDA essentially claimed it could force new uses, or new patient populations -- in this case, children -- on a label. While the rule was limited to pediatric uses, it opened the door for testing requirements for other off-label special patient populations and for other off-label uses. The end result could be a far riskier and costly approval process, and ultimately, fewer drugs."

But Mark Isaac, director of public policy for the Elizabeth Glaser Pediatric Aids Foundation, which has been a proponent of the rule, said the court's decision "deals a very devastating setback to childhood health in America. The pediatric rule has been producing extraordinarily important information about the safety and efficacy of drugs for children, and yesterday's court decision puts the safety of our children at risk."

Isaac said that about 75 percent of prescription drugs have not been tested in children, and so doctors cannot accurately know how youngsters will respond to particular dosages.

When the district court raised some objections to the pediatric rule earlier this year, legislators wrote a bill that would codify the rule and and give it the weight of law. That bill, sponsored by Sens. Hillary Clinton (D-N.Y.), Mike DeWine (R-Ohio) and Christopher Dodd (D-Conn.) passed the Senate health committee unanimously this summer.

© 2002 The Washington Post Company

* * *

Study of Californians Records Elevated Mercury Levels in Fish Consumers

[In The Associated Press.] http://www.washingtonpost.com/wp-dyn/articles/A56518-2002Oct20.html

A study of Californians who loaded their lunch and dinner menus with fish shows 89 percent wound up with elevated mercury levels in their bodies.

The research, presented Saturday by San Francisco internist Dr. Jane Hightower at a symposium of environmental health experts in Vermont, is one of the first studies to document mercury levels in Americans who eat more fish than the Environmental Protection Agency recommends.

Doctors are increasingly interested in the possible risks of eating too much mercury-tainted fish, and the Environmental Protection Agency and the Food and Drug Administration are trying to better inform the public about the subject.

It is a thorny problem because of the widely recognized benefits of fish, a high quality protein source loaded with heart-protecting Omega 3 fatty acids.

Conference participants didn't seem panicked about the findings: The majority ordered salmon for dinner Saturday though salmon is considered among the safest types of fish to eat.

"We are not talking about whether or not to eat fish," said the EPA's Kathryn Mahaffey, one of the conference organizers.

Hightower screened 720 patients from March 2000 to March 2001, then tested the mercury levels of patients who reported eating more than two servings of fish a week. That's the maximum the EPA recommends for pregnant women and small children.

The tests showed that of 116 patients who had their blood tested, 89 percent showed mercury levels greater than the 5 parts per million recognized as safe by the National Academy of Sciences.

Of that group, 63 people had blood mercury levels more than twice the recommended level and 19 showed blood mercury levels four times the level considered safe. Four people had mercury levels 10 times as high as the government recommends.

The peer-reviewed study is slated for publication Nov. 1 in the journal Environmental Health Perspectives.

The study monitored 67 patients as they reduced their fish intake and subsequently their bodies' mercury levels. Within 41 weeks, all but two had reduced their blood mercury levels to below government-recommended thresholds, according to Hightower.

The study did not address physical symptoms such as fatigue or memory loss associated with mercury poisoning. Some patients did report such problems, but Hightower's study did not seek to correlate symptoms with mercury levels.

Still, Alan Stern, a New Jersey public health official at the conference, said any mercury study focusing on people who eat a lot of fish is a sort of "holy grail" for the field.

Too much mercury damages the nervous system, especially in children and fetuses, but scientists are not certain how much mercury-tainted fish is needed to trigger health problems.

The FDA currently recommends that pregnant women and young children limit their fish intake to two 6-ounce cans of tuna per week if it's the only fish they eat, and to one can per week if they also eat other fish. The agency says they should not eat any swordfish, shark, king mackerel or tilefish.

About 78 percent of patients with high mercury levels reported eating canned tuna more than three times a month; 74 percent ate salmon more than four times a month; and 72 percent said they had swordfish more than once a month. Other fish commonly eaten by the patients included halibut, ahi, sea bass and sushi.

Hightower recommended that doctors concerned about patients' mercury exposure take dietary histories including fish consumption to help identify people at risk of accumulating too much mercury.

She also recommended that state and federal government agencies make the results of mercury testing in fish available wherever fish are sold, along with the details of consumption advisories.

Mercury is a naturally occurring element that makes its way into the environment when oil- and coal-fired power plants burn those fossil fuels. Rain washes it into waterways, where it settles and is eaten by microorganisms, which are eaten by fish.

The Vermont conference was organized by the American Fisheries Society and the EPA.

On the Net:

American Fisheries Society: www.fisheries.org

Environmental Protection Agency: www.epa.gov

Copyright 2002 The Associated Press.

* * *

TREATMENT

Unlocking the Mysteries Of Autism

As disease rates soar in children, parents turn to a revolutionary Los Angeles doctor

[By Carolyn Abraham.] http://www.globeandmail.com/servlet/ArticleNews/PEstory/TGAM/20021019/UAUTIN

/national/national/national_temp/5/5/24/

Canadian parents are flying to California with their autistic children to see a doctor who doesn't believe their children have autism at all, but a smouldering brain virus producing symptoms that look just like the disorder.

With the growing sense that autism is spreading like flu as numbers rise in industrialized countries, the viral theory -- both controversial and unproven -- is gaining interest, even among the mainstream medical community.

While doctors worry that desperation makes parents vulnerable to fraud and quackery, most can't help but wonder if there could indeed be a link between infections and autism, once viewed as a rare developmental disorder by the medical community.

Now Canadian doctors, on the urging of parents, are considering conducting a clinical trial of the complex antiviral therapy that the California doctor prescribes in conjunction with special diets.

"We have 40 families ready and set to go for the study," said Doug McCreary, who lives near Orangeville, Ont.

The McCrearys, whose youngest son, Matthew, has been on the therapy since May, are one of 24 Canadian families already registered with Dr. Michael Goldberg, whose office is based in the outskirts of Los Angeles.

Researchers at one of Ontario's university hospitals are now in talks with Dr. Goldberg, but until they formally decide to conduct the trial, they have asked not to be named, Mr. McCreary said. He has noted small, but significant, improvements in the five months his four-year-old son has undergone the therapy.

Parents have become a powerful driving force in recent autism research efforts. After all, nearly 60 years after it was identified, autism remains one of medicine's great mysteries, with no known cause, effective treatment or cure.

Speculation swirls around possible culprits: food allergies, vaccinations, mercury exposure, and without doubt, genes, perhaps those that encode both physiological and personality traits.

Autism, which hits boys four times as often as girls and which covers a spectrum of disorders, is marked by profound social disabilities. Those severely affected can't talk, make eye contact or return something as simple as a smile.

Estimates today suggest classic autism has increased fivefold in three decades, affecting 20 in 10,000, and as many as one in 300 may have an autistic disorder.

As a result, Dr. Goldberg's theories of a viral culprit exploiting children who are genetically susceptible has caught on with several parents.

"Science tells us that an epidemic, which this is, cannot be due to a genetic or developmental disorder," said Dr. Goldberg, who describes himself as being too impatient for mainstream medicine's long process of moving new treatments from labs to clinics.

Educated at the University of California medical school in Los Angeles, Dr. Goldberg believes people have become increasingly susceptible to certain immune-system disorders. He points to rising rates of ear infections, asthma and food allergies.

This, he suspects, is a product of defying Darwin: "Human beings are the only species to go against survival of the fittest." People increasingly choose mates on the basis of brains, not brawn, he says, passing on genes that predispose to immune-system weaknesses.

"Then you add to that a trigger, by some illness or infection," he says, and the combination in these children produces symptoms resembling autism.

Dr. Goldberg has focused, in part, on the role of the Herpes 6 virus, a common infection nearly all preschoolers pick up. If the immune system is weakened, Dr. Goldberg's theorizes, a child's body turns on itself and the virus heads to the brain, where it takes up long-term, low-grade residence.

He calls it the NIDS Hypothesis, short for neuro-immune dysfunction syndromes.

Dr. Goldberg, who works with researchers at the University of California at San Francisco, says brain scans of these children show lack of blood flow to the brain's temporal region, which is involved in language processing. It is also the site of the amygdala, important to both social and emotional behaviour.

Blood tests of children he treats show abnormally high numbers of viral antibodies, Dr. Goldberg says. This suggests an exaggerated immune response, or evidence of continued infection.

"If we catch these kids early enough, they can recover from this," Dr. Goldberg said. "Most of them started out normal and healthy."

+ Article continues at:

http://www.globeandmail.com/servlet/ArticleNews/PEstory/TGAM/20021019/UAUTIN

/national/national/national_temp/5/5/24/ <- - address ends here.

* * *

ADVOCACY

Principle Guides A Mother's Battle

She wanted nothing more than to stay at home and raise her babies.

[By Sarah Larson in the Courier Times.] http://www.phillyburbs.com/couriertimes/news/news/1018therapysuit.htm

She wanted nothing more than to stay at home and raise her babies.

Barbara de Mora of Doylestown Township couldn't have known then that the decision eventually would force her to learn psychological and therapeutic techniques. Neither could she have known that it would lead her into a lengthy court battle with Bucks County which may set a national precedent for parents of children with special needs.

A federal judge has ruled that Bucks must pay de Mora $6,842 for therapy she gave her daughter, who is now 5, after she proved it worked better than the county's program.

The check will not be in the mail any time soon, though. Robert O. Baldi, a New Hope lawyer who defended Bucks County, said he plans to appeal the decision to the federal Third Circuit. The appeal should be filed within a week, he said.

De Mora, though, said the money was not the point of the legal battle, which began in 1999. The point was to help her daughter and other sons and daughters across the country, she said.

"Of course, the check would be nice, but it's really about the principle," she said as her two daughters played in the background. "It's about the fact that the county had a responsibility to provide my daughter with an appropriate program. They failed, and refused to do it, even after I went through all proper channels and begged them to do it. I was left with no choice but to step in and learn how to do it myself."

The de Moras have two daughters. The girl in question - Barbara asked that her name not be published - was born in April 1997 with deafness, cerebral palsy and pervasive developmental disorder, a form of autism.

Under federal law, the government is required to pay for early intervention therapy for children with such disabilities.

The toddler began 24 hours a week of physical, speech and occupational therapy with Bucks County's department of Mental Health and Mental Retardation in July 1999. When Barbara asked to increase the number of hours and to include Lovaas therapy, the county refused, according to court papers.

The de Moras hired a Lovaas practitioner, Patricia Laudon. Laudon, though, had limited time and the de Moras couldn't find another Lovaas therapist.

Barbara learned how to deliver the therapeutic technique.

Her lawyer, Gary Mayerson, said the therapy is based on principles developed by Dr. Ivan Lovaas, a psychologist at the University of California at Los Angeles. Lovaas therapy breaks down individual tasks into specific steps.

"It's a scientific approach to teaching using one-on-one instruction so the child learns, brick by brick, how to accomplish a task," said Mayerson, a New York lawyer whose firm, Mayerson and Associates, represents only children with autism.

"If you wanted to teach a child to brush his teeth, a typical child will probably just mimic you, and in a few days, he's got it," he said, "but a child with autism spectrum disorder must be taught how to open the toothpaste, how to put the toothpaste on the toothbrush, how to put the brush in the mouth, how to move the brush against the teeth. That all takes time - and then they have to learn to do it without prompting."

The de Mora's daughter blossomed under the Lovaas method, Barbara said.

The family asked for a hearing to show how the therapy was helping the girl, so it would be added to her official program. A hearing officer took only written statements and then decided the county's plan was "appropriate" which meant she was entitled to no more or different therapy.

The de Moras appealed to state court, where a panel of three judges agreed that the county plan was not "appropriate" because Bucks submitted no evidence that it was helping the toddler. The court ruled the county should pay for the Lovaas therapy, which had been proven to help the girl.

A hearing officer calculated the payments at $3,520 for Laudon and $6,842 for de Mora for therapy delivered from October to December 1999.

Bucks County did not fight the payment to Laudon but appealed the award to de Mora in federal court. Baldi argued that parents shouldn't be paid for being parents.

"We're concerned that the precedent of this case says a parent should receive financial compensation for the time the parent spends with a child," he said.

"These children deserve and are entitled to extraordinary services from professionals, but we also expect that the parents will have an active role in providing these services."

On Oct. 4, U.S. District Judge Berle M. Schiller ruled that de Mora should be paid because she fulfilled the county's responsibility when it failed to do so.

Saying, "You could not find a more motivated mother on the planet," Mayerson said Barbara de Mora was not being paid to be a mother, but was being paid to be a therapist when the county would not provide adequate help.

"The court's decision merely acknowledges the extraordinary, beyond the call of duty - things that some parents have been forced to do when their child has been failed by the local educational agency," he said. "This is a landmark case. It will prevent school districts and counties from saying, 'We can't find anybody, wink, wink.' Now they have a real incentive to fulfill (therapy) programs."

De Mora said she became her daughter's therapist only after exhausting "all the proper channels" to have the therapy that helped the little girl added to her state-sanctioned program.

The de Mora's daughter is now 5 years old and has a cochlear implant that helps her hear, of which Barbara said, "It's making all the difference in the world."

Sarah Larson can be contacted via e-mail at slarson@phillyBurbs.com

 

 

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* * *

LETTER

When the Press Gets Mean

[The Tucson Citizen has been running a variety of reports that have been critical and unsympathetic to a Tucson 14 year old boy with Asperger's who has been charged with abuse of a dog which died of its injuries. This letter to the editor of the newspaper is from Carolyn Gammicchia. She doubts the paper will publish it. But we will. Thanks to Jerry Newport. –LS]

I am writing to the Tucson Citizen with the hope that you will publish my concerns regarding the way the case involving the alleged abuse of a dog by a 14 year old boy, affected by autism, has been handled by your publication. First I would like to tell you why I am writing this letter. I am a Police Officer and have been so for the past 16 years, seven of those years as an officer with the City of Detroit. I am also the mother of a eleven year old son affected by autism and am the Immediate Past President of the Macomb/St. County Chapter of the Autism Society of America and currently a member of two National Autism Society of America committees.

I have followed this story and have spoken with people involved with the case. I do feel your paper has violated not only this child's privacy rights by printing his personal information, but also his constitutional rights by not allowing him to remain innocent until proven guilty. This is a boy affected by a disability that does not always allow for abstract thought process and the ability to have knowledge of social norms. For this boy to be continuously ridiculed and judged by those within your articles is improper and does in no means portray the full scope of what has actually gone on in this situation. You have only sensationalize an unfortunate incident into something that will sell your publication and by doing so have possibly ruined the life of this 14 year old boy in the process. This is not a child that will be able to shrug off the guilt he feels having had knowledge of something of this nature, however the child proclaims he is innocent and it appears that your publication has done nothing to show that side of the story.

I would also like to say that the article you ran on October 17th regarding animals as victims of violence was very prejudicial regarding this case. The information provided by Child Psychologist Dennis Embry was a very bad example to be used to explain the actions by someone affected by autism also. His quote that indicated that juvenile animal abusers "tend to be a little autistic" is insulting and absurd. Persons affected by autism are just that, they have a neurological disorder, there is no such thing as being "a little autistic". For a professional in the psychology field to make an inaccurate statement such as that and then to have you print it sickens me. To think of all the work that many people have done, including myself to have people accept our loved ones affected by this puzzling disorder, and then have a "specialist" make such an inaccurate and damaging blanket statement that will shed an atypical shadow on those with autism, it's very sad indeed.

What I would like to see from your publication is an article explaining why this child was not allowed the rights that have been allotted to others. Why weren't all of the boys that were involved in the original incident subjected to what this boy has been through. Why was this child that was ultimately charged not allowed to have his parents or legal representation during his interview with police? Have those officers that have had contact with this child been appropriately trained to interview a child with a developmental disability and were they even aware of what the disorder of autism entails? Were they aware of communication deficits or auditory processing problems which may have affected this child's ability to appropriately answer the officer's questions. Were they also aware that if they had knowledge of this child's disability and interviewed him without his parents or legal representation, that they indeed violated the America Disabilities Act. The ADA provides that all law enforcement officials employed by a state or local government agency must adhere to principles of non-discrimination in carrying out their duties.

I do have to say that some of the damage that you have caused can be repaired, but that child will never be able to regain what your publication has taken away from him...his childhood, his sense of security, and his innocence. I have to say I don't not know if this boy is guilty or innocent, but what I do know is that the anger generated by the way you've reported this case can be very dangerous and damaging. I'd hate to think that people would look at our son and think he could possibly harm the hamster he keeps as his pet in his room or his dog that has been his companion for the last nine years. I only ask that you not generalize on such a sensitive topic and make others affected by a very misunderstood disorder victims of such misguided information.

I do sympathize also with those that have lost their beloved dog in such a senseless and devastating manner. But I would ask that we look at what has transpired in this case. The life of a child has been ruined, his disability has been inaccurately portrayed, and the community may still have perpetrators amongst them that obviously need help. The other boys in this case not only victimized that animal, they also victimized the child that has been wrongfully accused in this way.

Please feel free to contact me if you have any questions regarding my comments. I have just initiated a program in Michigan regarding the training of first responders in the field. The L.E.A.N. On Us Project (Law Enforcement Awareness Network) will be a training program for law enforcement officers, fire department personnel, and emergency medical professionals to assist them in identifying hidden disabilities such as Autism Spectrum Disorders, Epilepsy, Deafness, Tourette's Syndrome as well as Mental Illness. The program will allow for first responders to better serve those affected while also assist them to remain safe in possible volatile circumstances which may occur in the field.

- Carolyn Gammicchia

* * *

FUNDRAISING

Burkhart Tech Donation To Aid In Teaching Of Autistic Children

[A rare donation of funds going for autism treatment, rather than research. By Myrna Whitehead in The Lubbock Avalanche-Journal © 2002.] http://www.lubbockonline.com/stories/101902/edu_1019020020.shtml

To assist in training teachers of autistic children, James and Jere Lynn Burkhart of Lubbock donated $550,000 to Texas Tech's College of Education on Friday.

The Burkhart Family Endowment for Autism Education will fund scholarships, fellowships, lectureships and professional development for graduate students and faculty members in the college's special education program. In addition, the funds will be used for the Burkhart Project, a four-prong initiative to provide training development in autism education, research and travel expenses.

"When our grandson was diagnosed 15 years ago, little was known or shared about the education and care for autistic children," said Jere Lynn Burkhart.

"It wasn't until the film 'Rainman' that people started learning about this kind of culture."

"Unlike the film, not all autistic children are savant," James Burkhart said.

"In fact, no two children have the same level of autism. That's what makes this situation unique."

The Burkharts said they found assistance from various institutions, including the University of North Carolina and the University of Tulsa. With their gift, they hope to establish Texas Tech as the mecca of autism research in the state, James Burkhart said.

In accepting the gift, College of Education Dean Gerald Skoog spelled out plans for utilizing the funding. The college will develop training modules that can be used by teachers, aides, parents and caretakers so that they can learn about the needs of autistic children.

The funds also will be used to bring a professional in the field to the campus to share his or her expertise. This knowledge then would be presented via satellite to other campuses at Junction and the Hill Country, Skoog said.

Tech Chancellor David Smith said the project will be interdisciplinary to include the School of Medicine.

James Burkhart is a graduate of Texas A&M University. Jere Lynn Burkhart attended Hardin-Simmons University.

* * *

AWARD

Rollens to Receive Parent Leadership Award

Rick Rollens will receive NVIC's Parent Leadership Award at the Third International Public Conference on Vaccination being held Nov. 7-9, 2002 in Arlington, VA. Rick is the co-founder of Families for Early Autism Treatment (F.E.A.T.) and the M.I.N.D. Institute at University of California, Davis, which last week announced the results of a study into the dramatic increases in autism in that state. The father of an autistic son, Rick has been instrumental in raising public awareness about the need for basic science research into the biological causes of autism. For conference information, go to www.909shot.com.

 

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