Schafer Autism Report, July 15, 2003

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Press Conference on Autism Epidemic - Parents and Scientists to Demand White House Conference Wednesday, July 23, 2003, 10:00 a.m. - 11:00 a.m., Washington, DC Rayburn Building - Rm. 2203

The number of autistic children continues to rise. It has been proven that it is NOT better diagnosis. School districts across the nation are reeling from the budget impact as they struggle to educate these children. It is estimated that 30,000 more children succumbed to autism last year. That means an approximate 60,000 parents, 120,000 grandparents, and countless other extended family members were also affected.

Parents want to know why such a devastating epidemic is not getting well-deserved attention. Parents and scientists feel it is imperative to urge President Bush to hold a White House Conference on Autism to bring this health crisis to national attention.

On July 23rd, a press conference will be held in Washington. Several scientists will be speaking on the latest autism research findings and why more money is desperately needed to find the cause of this devastating disorder, why the numbers are rising so sharply in such a small period of time, and why the largest and most expensive medical health crisis in children ever known in America is getting only 58 million dollars from NIH when other diseases are getting in the billions.

Currently scheduled to appear: Congressman Dan Burton (R - IN) Dr. Mark Geier, Dr. Boyd Haley, Dr. James Adams, Dr. Jeff Bradstreet, Dr. Jeff Segal, Lyn Redwood, President, Safe Minds Scott Bono, The Autism Autoimmunity Project (TAAP).

Several other doctors and researchers will submit statements regarding their latest research findings. Congressmen and Senators will be on hand to lend their support for more research. Speakers will be added as they are confirmed.

They’re called special needs patients and they need more care than most dental patients. But there aren’t enough dentists who treat them .

One who does is Richard Feldhake. A quarter of his practice at offices in Scottsdale and Phoenix is dedicated to special-needs care.

His patients include children and adults who may be physically limited by birth defects, injury or disease or have mental retardation, behavior disorders or developmental disabilities such as autism.

They might have tics that keep their heads and limbs in motion. Some cannot speak. They may be withdrawn and clench their mouths shut, or violent and land punches and kicks, seeing the dentist as an invader. Most have a high degree of anxiety.

Their conditions can both prohibit conventional methods of care and create special oral health problems because their caretakers don’t have much success brushing their teeth.

Treating special needs patients isn’t a medical specialty, but dentists organizations, including the American Dental Association, agree their treatment takes special skills. Because their care is complicated, time-consuming and less financially rewarding than typical cases, few dentists acquire the skills. Some prefer not to treat disabled patients, leaving them scrambling for alternatives.

“They’ll stop you at the door. I’ve been turned away by two different dentists in the Valley,” said Debra Lawson-Gonzales, 46, whose son, Sean, 18, has multiple disabilities. “They said they were nervous,” Lawson-Gonzales said.

A dentist who treated Sean wouldn’t let his mother in the examination room, which panicked Sean, who is hyperactive and mentally retarded.

A few years ago, Sean’s medical doctor referred him to Feldhake, and now Sean has calmed down in the dental chair. He has even had a root canal.

“Everybody’s nervous at the dentist, but you need to have a lot more patience with these people,” Feldhake said. .

For new patients he does an assessment to determine whether they can be treated in a normal dental setting, and whether special restraints are necessary.

Then a treatment plan is created to address the patient’s needs. That may include getting a medical history and contacting the patient’s physician to find out what limitations need to be observed. .

Treatment begins with a tooth cleaning, which can take an hour and may require sedation.. Often after an examination, work doesn’t proceed until a year later, to avoid sedating the patient again too soon. Feldhake often uses the services of dental anesthesiologists.

Part of the mission is a psychological one, said the dentist. “I’m friendly, I talk to them and communicate, look into their eyes, let them know I am friendly,” he said. “There’s some intensity to it, but I sit back and take that breath and say, ‘God’s going to help me get this done.’ “

Over time, patients can lose their nervousness. Steve Pilkington, a man in his 40s who lives in a group home in Phoenix, is a patient of about five years who suffers from cerebral palsy and is a quadriplegic with spasticity, meaning his limbs flail around.

“He is cooperative. He doesn’t have a lot of verbalization, but he understands. And you can kid him and he laughs,” Feldhake said.

Because of the time consumed in treatment and the fact that sedation is often not covered by insurers, Feldhake’s special needs care operates at a loss, shored up by his conventional practice.

Promising changes are in the wind, though. A national group of dentists and doctors was recently launched to address the special needs patients. And Arizona is working on providing special training to more dentists.

Feldhake, who went to Southern Illinois University, has other missions. He’s active with his wife, Michelle, and two kids in Arizona Indian Scouts, and hunts and fishes.

Every year, he and fellow-dentist friend Tim Lukavsky volunteer with Alternative Missions, a group that provides free medical care to people in Helene, Honduras, an undeveloped community.

“We live in a world where people only want to live with beautiful people,” said Feldhake’s friend, Lukavsky. “Rick’s answering a higher call. People who go to him, go to someone who understands and helps them break down barriers.”

[This article along with the following two are from the Oakland Press of Michigan.]

Troy resident Aaron Freed panicked when he discovered a notice in his apartment on a recent Friday.

The note did not suggest that he was being evicted or that there was a problem with the utilities, but that new carpet would be installed the following Monday.

Immediately, Freed worried about not being able to make out a check to pay for the installation. The people who help him with his finances would not be available over the weekend.

What’s more, he worried about having to move a great many collected possessions out of his bedroom and then return them to their rightful places once the new carpet was in.

The anxiety Freed experienced is a frequent experience in his life - a symptom of a condition called Asperger’s syndrome. Anxiety precipitated by what a typical person might see as an insignificant change in one’s routine is a common trait among people with the condition, which is a high-functioning form of the pervasive developmental disability autism.

West Bloomfield Township resident Sue Hodess, who has two autistic sons, has done well to maintain an ironic sense of humor.

“I used to laugh because I’d think: ‘There’s not a lot of pressure here. I just can’t die,’“ the 41-year-old mother said.

She and her 42-year-old husband, Ron Hodess, have by no means been spared any degree of the grief, frustration, exhaustion and desperation many parents of children with autism experience. But at the same time, they have done their best to celebrate the joys any parent experiences.

But it’s been a struggle. Their 10-year-old son, Jay, was diagnosed with the developmental disability at age 3. In addition to exhibiting common characteristics, such as delayed speech, impaired social skills and intense and prolonged attention to a single object, Jay would scream or cry for hours on end. Sue said she long suspected the problem was something other than colic. “When he was finally diagnosed, it was like, ‘Thank God, we know what it is now.’ “

“You just want to be a soccer mom, and suddenly you’ve become a therapy mom,” Sue Hodess said.

There are few more frightening things parents can hear than that their child has been diagnosed with autism.

And that is something more and more parents are hearing, nationally and in Oakland County. The Autism Society of America reports a 172 percent increase in cases of the developmental disorder in the past decade. In Oakland County, the number of students placed in special classrooms for the autistic has risen by more than 400 percent in those years.

There are variations in severity - but most experts agree there is no cure. Generally, children with autism will never learn, achieve and communicate as other children do. Their parents often face a lifetime of physical, intellectual and emotional demands.

“It’s very, very, very stressful,” said Vicky Debold, an assistant professor in the School of Nursing at the University of Michigan.

The New York Yankees announced that they will host Autism Awareness Night on Tuesday evening, August 19, 2003, during the 7:05 p.m. game against the Kansas City Royals. Pre-game ceremonies begin at 6:30 p.m.

The night will feature a pre-game ceremony recognizing the strides of the autism community to this point and advances to come in the future. Additionally, locations will be set up on the concourse outside of Yankee Stadium for representatives to educate the public on autism through informational literature and speaking.

Baseball for Autism Awareness, a non-profit autism educational organization, is serving as co-host of this event and has a limited number of half-price tickets to offer. Main reserve seats that are normally sold for $33 per ticket are being sold by Baseball for Autism Awareness for $16.50.

For advance ticket information, please contact Yankees Autism Awareness Night Coordinator Joni Jones at Baseball for Autism Awareness, 732-818-1145.

Eddie Torisky is 46 years old, works 2 1/2 days per week at a Monroeville print shop and spends his weekends reading and listening to CDs on his boombox in his bedroom at his father’s house.

He has autism and is moderately retarded. During the week, he lives in a Coraopolis group home. He used to live at the Western Center, and his father filed a lawsuit, still pending, in 2001 when the state Department of Public Welfare shut down the Washington County facility that had been his home for more than 30 years.

Dan Torisky will be sharing his experience and advice as a parent of an autistic person in a presentation at the annual conference of the Autism Society of America, which begins tomorrow and is based at the Westin Convention Center Hotel, Downtown. It ends Sunday.

“I’m going to tell them that [people with autism] never stop learning,” Torisky said. “Never stop challenging them to learn, at their own rate.”

Eddie Torisky wasn’t diagnosed with autism until he was almost 11, and at that time there were no intensive interventions, such as behavioral and speech therapy.

One Saturday morning when he was 28, his father went to Apel Printing to get some papers bound and took Eddie with him.

The younger Torisky had already put the pages in order, and manager Bob Apel asked him if he enjoyed that kind of work. I can do it, Eddie answered. Apel offered him a paying job.

Is that a job in the community? Eddie asked. Apel said, I think I’m in the community.

Once home, the young man quietly told the family dog his good news. Then he went to his room. What he did next made his father cry like a baby.

The younger Torisky yelled at the top of his lungs, “I got a job in the community, and I earned it!”

He has been working part time for 18 years now doing collating and what he calls “housekeeping” at Apel and the Autism Society of Pittsburgh, of which his father is president.

“He does square roots in his head,” Torisky said of his son. “He does a lot of things that are amazing but totally useless. He always will need social oversight.”

Torisky will be on a panel with other parents, including Cindy Duch of Penn Hills, whose 8-year-old son Andrew was featured in a story in Sunday’s Post-Gazette.

“If you can save a parent one additional step, maybe they can get therapy faster or find something they might not have found otherwise,” Duch said. “I try and get involved with things that will help that way.”

About 2,000 people are expected to attend the conference, which is being held in Pittsburgh for the first time, said Rob Beck, executive director of the national autism society. It will bring together researchers, health care providers, people who have autism and their families and government officials. More than 120 presentations will be given on basic research, therapeutic interventions and raising awareness of the condition.

Autism is estimated to affect up to 1.5 million Americans and recent studies indicate that the incidence rate is rising dramatically. Beck said that while the U.S. population increased by 13 percent in the 1990s, autism cases jumped by 172 percent.

Scientists are trying to uncover the reasons for the startling increase, which does not appear to be fully explained by a broadening of the autism case definition. Care costs $90 billion annually and is projected to rise to more than $200 billion in the next decade.

However, current funding for basic and applied autism research is about $50 million annually.

“That’s not nearly enough of a commitment to try and do something about autism,” Beck said. “That’s one of the key issues, getting additional funding to address this national health crisis.”

The growing numbers of children with autism could have a huge impact on school systems and the provision of special education. Already many affected families are frustrated by the low funding levels of the Individuals with Disabilities Education Act, or IDEA.

If autistic children are diagnosed early and intensive behavioral services are promptly put into place, they stand a better chance of living fuller lives, Beck noted.

“In many cases they can be educated, can be able to socialize with other people, can learn to hold a job and pay taxes and do all kind of other things to become meaningful and productive members of society,” he said.

Estelle Richman, secretary of public welfare for the state, is establishing an autism task force to “improve the organization, financing and delivery of services and treatment for people with autism in Pennsylvania,” said spokeswoman Stephanie Suran.

The task force will include family members, health care workers, researchers and educators, and plans its first meeting in Harrisburg July 26. It will have nine subcommittees focusing on early intervention, adolescents, needs of adults and education and training.

Claude Allen, deputy secretary of the U.S. Department of Health and Human Services and Robert Pasternak, assistant secretary for special education and rehabilitative services in the U.S. Department of Education, will be making presentations at the conference.

There also will be sessions about the measles-mumps-rubella vaccine and environmental factors that some have contended contribute to the development or worsening of autism, Beck added.

“At this stage of the game, there’s been no causal relationship that’s been scientifically found, but there’s an awful lot of very upset parents who seem to be able to link the two together,” he said. “And we believe that there needs to be significantly more research into this area.”

One of the keynote speakers will be Temple Grandin, an associate professor of animal science at Colorado State University, who recounted her experiences of having autism in two memoirs.

Among local reseachers, Dr. Nancy Minshew, director of the Center for Autism Research at the University of Pittsburgh School of Medicine, and her colleagues will discuss “how people think and what the brain is doing when people think,” as she put it.

Minshew is one of several people who will be honored for their leadership in the autism community. The conference gives her an opportunity to talk to parents and offer hope.

“There will be a cure for autism and it will be in the lifetime of their children,” she said.

Cynthia Johnson, director of the Autism Center at Children’s Hospital, will be giving a talk on innovative treatments, including early findings from a drug study she conducted.

The hospital recently launched a follow-up clinic for families with new diagnoses of autism. It was created in response to criticisms that after parents were told their children had autism, there was often a long lag before services were put in place.

“Families often felt somewhat at a loss, overwhelmed, abandoned,” Johnson said.

I found some of the comments by Dr. Spurgat in the July 9 SAR article (Health Officials Upset New Law Won’t Force Vaccination in Texas) to be rather interesting. In particular, Dr. Spurgat was quoted as saying “Parents who don’t want their children vaccinated because of conscientious objections often are victims of unscientific information that serves as a scare tactic against immunizations.” He then goes on to state that “It’s a shame these people are operating off so much misinformation.”

But perhaps the most interesting comment he makes is “They’re putting their children at risk and they’re putting my children at risk.” Now THAT is a pretty scary statement, especially coming from someone who implicitly condemns scare tactics almost in the same breath. How frightening it is when all these “misinformed victims” are painted as a threat or a danger to other peoples’ children, when in reality their actions could represent the best hope for protecting those same children (and all children to come).

After all, who else will ever expose the real issues surrounding vaccinations, and who else will ultimately force accountability onto the vaccine manufacturers and government regulators who continually try to shield them? These “misinformed” parents may indeed be victims -- of government negligence and corporate greed. And no one should be told to be afraid of them or their kids.

In the big picture, they are fighting to protect all our children. I really think that that any parent who understands the vaccine issues will also understand that. As for Dr. Spurgat, who’s really scaring whom?

[This strident, polemical response to the Bill Gates article from the NY Times, reprinted in yesterday’s Schafer Autism Report, comes from Greg Palast, who is the author of the New York Times bestseller, The Best Democracy Money Can Buy. The opinions expressed belong to the writer and does not necessarily reflect those of this newsletter. Thanks to Sally Kirk.]

Bring back Jayson Blair! The New York Times has eliminated the scourge of plagiarized journalism by eliminating journalism altogether from its front page.

Check this Sunday’s edition: “Bill Gates is no ordinary philanthropist,” gushes a Times reporter named Stephanie Strom, re-writing one of the digital diva’s self-loving press releases. Gates has saved 100,000 lives by providing vaccines to Africans, gushes Stephanie, according to someone on the payroll of Bill Gates. And he’s making drugs for Africans, especially for AIDS victims, “cheaper and easier.” Stephanie knows because she asked Bill Gates himself!

Then we get to the real point of this journalistic Lewinsky: “Those who think of Mr. Gates as a ruthless billionaire monopolist . may find it hard to reconcile that image with one of a humorously self-deprecating philanthropist.”

Stephanie, let me let you in on a little secret about Bill and Melinda Gates so-called “Foundation.” Gate’s demi-trillionaire status is based on a nasty little monopoly-protecting trade treaty called “TRIPS” - the Trade-Related Intellectual Property Rights rules of the World Trade Organization. TRIPS gives Gates a hammerlock on computer operating systems worldwide, legally granting him a monopoly that the Robber Barons of yore could only dream of. But TRIPS, the rule which helps Gates rule, also bars African governments from buying AIDS, malaria and tuberculosis medicine at cheap market prices.

Example: in June 2000, at the urging of Big Pharma, Bill Clinton threatened trade sanctions against Argentina for that nation’s daring to offer low-cost drugs to Southern Africa.

Gates knows darn well that the “intellectual property rights” laws such as TRIPS - which keep him and Melinda richer than Saddam and the Mafia combined -- are under attack by Nelson Mandela and front-line doctors trying to get cheap drugs to the 23 million Africans sick with the AIDS virus. Gate’s brilliant and self-serving solution: he’s spending an itsy-bitsy part of his monopoly profits (the $6 billion spent by Gates’ foundation is less than 2% of his net worth) to buy some drugs for a fraction of the dying. The bully billionaire’s “philanthropic” organization is currently working paw-in-claw with the big pharmaceutical companies in support of the blockade on cheap drug shipments.

Gates’ game is given away by the fact that his Foundation has invested $200 million in the very drug companies stopping the shipment of low-cost AIDS drugs to Africa.

Gates says his plan is to reach one million people with medicine by the end of the decade. Another way to read it: he’s locking in a trade system that will block the delivery of cheap medicine to over 20 million.

The computer magnate’s scheme has a powerful ally. “The president could have been reading from a script prepared by Mr. Gates,” enthuses the Times’ cub reporter, referring to Mr. Bush’s AIDS plan offered up this week to skeptical Africans. The US press does not understand why Africans don’t jump for Bush’s generous offer. None note that the money held out to the continent’s desperate nations has strings attached or, more accurately, chains and manacles. The billions offered are mostly loans at full interest which may be used only to buy patent drugs at a price several times that available from other nations. What Africans want, an end to the devastating tyranny of TRIPS and other trade rules, is dismissed by the Liberator of Baghdad.

We are all serfs on Microsoft’s and Big Pharma’s ‘intellectual property.’ If Gates’ fake philanthropy eviscerates the movement to free Africans from the tyranny of TRIPS, then Bill and Melinda’s donations could have the effect of killing more Africans than then even their PR agents claim they have saved.

The Sensory Learning Program is a multi-modal sensory integration experience with over 12 years of success. See www.SensoryLearning.com or call Rene at 810-632-4017 for more information.

I am a writer for Education Week www.edweek.com, a national newspaper covering K-12 education. This year, the topic is special education. We are looking for students to feature in brief profiles to illustrate challenges or failures in special education. The column will focus on the students’ experiences with getting access to the curriculum taught to students without disabilities, access to the general curriculum. Lisa Goldstein LGoldstein@epe.org. or 301-280-3167

Does anyone know if a study has been done that looks at a correlation between mercury amalgams in the mouths of mothers of autistic children. As a mother of two autistic boys, and with a mouth full of fillings, I can’t help but wonder if my sons were born with a high level of mercury in their bodies that was then added to with all the mercury in their vaccinations. kelliston@comcast.net

On Wed., July 23 we’ll be holding a press conference at the Capitol in Washington, D.C. to call for a Presidential Autism Conference. I know many of you will be unable to attend but we could really use your help. We’d like to pass out packets to every Senator and Congressmen’s office if possible and also pass out media packets with the same information. For a small donation of $15 we’d like to include a picture and short biography of your children with autism spectrum disorders to be used as a cover page in each packet. Please send your child’s photo and short biography to Jo Pike at JPiker@aol.com To donate call April at 1-800-939-TAAP to use your credit card over the phone.

I would love to hear about any successful social skills classes or groups that would be appropriate for a 6 1/2 year old girl with mild Aspergers in the Worcester, MA area. Kathleen Klauze@auburn.mec.edu

Many of you responded to me at great length and I appreciate the time all of you took. I will get back to each and every one of you but I have a lot of responsibility here at home. I am single and work full time and take care of two disabled along with doing all the housework, yard work, cooking and laundry. Please keep in touch because then I don’t feel so alone. Thank-you all very much. Linda

I’ve been introduced to a new food supplement company called MANNATECH, INC. that seems to be having some benefits on our 8 1/2 yr old autistic daughter. She’s been on this since June 21st & we are already seeing some small improvements. www.glycoscience.com & www.resultsproject.net People can also email me, Carmen, at gf9164@socket.net

Author Nick Martin is researching the impact of children with special needs on marriage, dating, and partner relationships. Parents are invited to share their experiences and recommendations to assist other parents. What have you learned that you’d like to share with others? What worked or didn’t? What do you wish you had known years ago? Email by Oct. 30th NMartin@4accord.com

There is a website for puzzles. It has puzzles cuts from 6 pieces to 247. You chose the cut for any puzzle on their site. They range from “classic”,

“US map” cut, “circle”, “bulb”, and many more. When you subscribe you get

a puzzle a day sent to you. In your account there is a public and private area where you can upload your pictures and make puzzles out of them. www.jigzone.com

I received your name from a behavior consultant in the Boston area. I recently relocated to Boston and I am looking to work provide ABA consulting to children diagnosed with autism and their families. Robin Shevland robbie_mitchell@yahoo.com

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