NAA and the Wrights

Yesterday the National Autism Association openly challenged Bob and Suzanne Wright to account for their statement about Katie.

Today NAA sent out a notice of their conference in the fall.

Suzanne Wright is listed as one of the speakers.

I am guessing that things are not as chilly between Bob and Suzanne and the environmental/biomed camp as they seem to be on the surface.

There is not a chance that Suzanne would walk into a room full of NAA members and extol the virtues of genetic research over environmental. What would be the point?

Either way, my hat is off to the woman. She is going to be pelted with questions about what is going on at Autism Speaks. I really respect her for coming.

I will be at this conference if only to hear from Suzanne Wright.

Autism Bites: SIX Autistic Kids

This post should be entitled Utah Bites.

These people have six children with one form of autism or another. So surely the state must have rushed to their aid as this is vastly more than any parents should have to handle on their own. Right??

Nope.

Mom makes a joke that, the house is so messy, might as well just "burn the whole thing down and start over", a sarcastic comment that I have made dozens of times both before and since having children, so social services over reacts and takes the children away for two weeks and evaluates mom.

OR

UTAH COULD SPEND LESS MONEY, NOT TRAUMATIZE THE FAMILY, AND JUST GIVE THEM CLEANING AND RESPITE SERVICES!!!

You see the word "services" in "Social Services" has the root word 'serve' in it. It implies that their job is to SERVE people in difficult positions.

If these people do not qualify as a family that needs to be served, then no family does.

Utah and whatever local "service" organization were involved here should be ashamed of themselves.

The Kirton's get my vote for parents of the year.

I would NOT be able to show the kid of good humor that they are displaying, but then again I guess that they probably don't have the luxury of actually complaining of the way they have been treated.

It would probably get their kids taken away from them again.

This makes me angry.

Autism x 6: Family's kids all have the disorder
By Angie Welling
Deseret Morning News

MURRAY — One minute they're sitting, the next they're gone. Off the couch and onto the rocking chair, into the corner of the room, anywhere but where they were.
The children move quickly, often too fast for their parents — or even the camera's lens — to catch them.

Mary Kirton stands in her high chair in the kitchen during dinner. The Kirton family has six children with autism of differing degrees.

This speed, this constant flash of children, is why the Kirton house looks like it does: a veritable maze of locked doors and makeshift barricades that are designed to keep kids in, or out, of certain areas. It is why the Kirton parents can keep talking through just about anything, hardly raising their voices while 8-year-old Nephi has yet another "meltdown" as 5-year-old Sarah, aka "Tigger," bounces madly on the couch beside them.

After all, if John and Robin Kirton focused too much on these incidents, who would catch 3-year-old Ammon, lovingly referred to as "The Destroyer," before his little hand finds its way into his dirty diaper? And where, during all of this, are the older children, Bobby and Emma, or the baby, Mary?

Life with six children is tough. Life with six children with autism practically defies description.

The stress has landed the family in juvenile court, following an offhand comment from a frustrated mother, and cost John Kirton his job and the family's medical insurance. But it has also helped the Kirtons — who now market their own "Autism Bites" T-shirts — recognize the healing power of laughter.

John Kirton hugs his 5-year-old daughter, Sarah, at the family's home in Murray. John misses at least one day of work every couple of weeks to tend to his family.

"We use sarcastic humor to diffuse our stress," Robin Kirton said with a smile. Added husband John: "If we didn't laugh, we'd cry."

Dubious distinction
In Utah, 1 in every 133 children has autism, according to a recent study that placed Utah's rate about 12 percent higher than the national average. University of Utah researchers found that the rate is even higher for boys, at 1 in 79.

Even with such high state rates, having six children from the same family on the autism spectrum is extremely rare, said Judith Pinborough Zimmerman, Ph.D., assistant professor in the department of psychiatry at the U.

"What tends to happen is sometimes families, if they have one child with autism, they tend to stop having other children," she said. "Geneticists refer to it as stoppage."

Autism is characterized by impaired social, communicative and behavioral development. It is a spectrum disorder, with symptoms and characteristics ranging from mild to severe. Common characteristics include resistance to change, a difficulty expressing needs, tantrums, difficulty socializing with others, an obsessive attachment to objects, over- or under-sensitivity to pain and a preference for being alone. There is no medical cure for autism.

Autism cannot be detected by medical tests; diagnoses are based primarily on observation. Its causes are unknown, though research indicates that genetics can be a factor, while many believe that environmental factors and even childhood vaccines may be to blame.

The Kirtons note all of these factors when questioned about the cause of their children's autism. They also point to John's age as a possible factor, as he was over 40 when all of his children were born. (Bobby, the oldest boy, is Robin Kirton's son from her first marriage.)

The Kirton's own research, through Internet searches, online discussion groups and local autism conferences, has led the family to believe it may lead the nation in the number of children with autism. It's a dubious distinction to John and Robin Kirton, but they also see it as an opportunity to educate others about the disorder and, maybe one day, start their own nonprofit organization to raise money for other families with autistic children.

This week, researchers from the Utah Registry of Autism and Developmental Disabilities, a joint project between the state health department and the U. medical school's department of psychiatry, will visit the family's home to draw blood from each family member as part of an ongoing study into the role of genetics in autism.

'Dangerous thoughts'
Two-year-old Mary Kirton plays on the couch with her mother. Mary has PDD-NOS, which stands for "pervasive developmental disorder -- not otherwise specified."

Two-year-old Mary Kirton plays on the couch with her mother. Mary has PDD-NOS, which stands for "pervasive developmental disorder — not otherwise specified."

John and Robin Kirton bristle when asked the all-too-familiar question about their family: Why didn't they, as many parents do, stop having children?

Depending on their mood, the Kirtons respond with humor, frustration or defensiveness. Regardless, the answer remains the same — all of the Kirton children were already born when Bobby's fifth-grade teacher told John and Robin she suspected the boy suffered from Asperger's syndrome, a mild form of autism.

According to the Utah Registry of Autism and Developmental Disabilities, signs of autism-spectrum disorders are often the most obvious in 3 and 4 year olds, while more mild forms are often not diagnosed until later in childhood.

After observation tests confirmed Bobby, now 13, was a high-functioning autistic, the Kirtons began to become concerned about their other children. Sarah's diagnosis came next, then Ammon's.

"That's about when my grieving period started," John Kirton said.

The Kirtons sought early intervention services for the two children, each considered "classic autistic." Falling at the severe end of the spectrum, each child is still in diapers and has limited verbal skills. It was one of those early intervention workers, from a local nonprofit organization that contracts with the Utah Department of Health, to whom Robin Kirton made the comment last fall about the family's Murray home being so dirty that some days she was tempted to "burn the whole thing down and start over."

The remark was never meant seriously, said Robin Kirton. It was simply one of those "dark and dangerous and scary thoughts that crosses the minds of all parents but you don't do."

Still, within an hour, workers from the state Division of Child and Family Services were at the front door. One week later, all six children were at the Christmas Box House, where they lived for two weeks while their mother's mental state was evaluated.

"I feel like my character was, at first, so smeared," Robin said. "At the same time, I know they were doing their job. I've just had to prove myself and earn our freedom back.

Emma Kirton, 9, chases Mary around the living room. The children move quickly, often too fast for their parents to catch them.

Emma Kirton, 9, chases Mary around the living room. The children move quickly, often too fast for their parents to catch them.

"It really helped humble us. It made us appreciate the children more."

It also led to an official diagnosis for the other three Kirton children after the juvenile court judge ordered that they be tested for autism, as well. Last November, the news finally came: Emma, 9, and Nephi also have Asperger's syndrome and 2-year-old Mary has PDD-NOS, which stands for "pervasive developmental disorder — not otherwise specified."

The news, Robin said, "was hard to take." However, the diagnoses also helped the family in certain ways, she said. "For one, it helped make sense of all the stress."

'Armageddon level'
The Kirtons will be back in court late next month for what they hope will be their final court hearing. "The thing with the thing," as John Kirton refers to the state intervention, is finally winding down.

The pair has made necessary changes to their home, and John Kirton has found work driving a truck for a local excavation company. The owner is sympathetic to the family's situation and the fact that John misses at least one day of work every couple of weeks to tend to his family — the reason he lost his previous job. And although John and Robin are without health insurance, three of the children receive Medicaid and the other three are on federal SSI (supplemental security income) through Social Security.

Meantime, the couple, who celebrated their 11th wedding anniversary in late May, will continue to cope with their situation in their own ways. John blogs on their Web site autismbitestheblog.blogspot.com/ about his family and rents World War II movies because, "even though I know how it ends, I like to see the fighting and how they got there." Robin, on the other hand, steals whatever free time she can to play her favorite computer game, Snood.

Recently, while reaching the highest level in the puzzle game, Robin reached an important conclusion about her life.

"I realized that the lower levels aren't fun now, because I'm good at it," Robin Kirton said. "If I had, say, six normal kids or less kids that were normal, that would be easy for me. God knew I was up for the challenge, so he made it.

"Six autistic kids is my Armageddon level."

NAA and SafeMinds to AS: "Hey... What the Hell"!?

NAA and SafeMinds want Autism Speaks to explain themselves and their decision to distance themselves from Katie and her comments. I would love to hear the answer to that as well.

Statement from the National Autism Association (NAA) and SafeMinds regarding board member Katie Wright, her recent interview with David Kirby and subsequent statement from Autism Speaks

The National Autism Association (NAA) and SafeMinds compliment Katie Wright for her thoughtful commentary in a recent video interview. We were surprised by a subsequent announcement by Autism Speaks about Katie, whose son Christian was the driving force behind the creation of Autism Speaks by her parents, Bob and Suzanne Wright. The announcement stated that Katie should not be considered a spokesperson for Autism Speaks and her views do not represent those of her parents or their organization.

In her interview with Evidence of Harm author David Kirby, Katie speaks from her heart with regard to her son's diagnosis of autism, the struggles and hardships she and her family have endured as a result and what she feels should be the direction of autism research. In the interview, Katie makes clear she is expressing her views as a parent and not as a representative of Autism Speaks. It is odd that an organization would issue a statement counteracting something that doesn’t exist. A more serious concern is that Katie's substantive points on autism research and causation, which are shared by so many families, are apparently being opposed by an organization that has stated its commitment to pursuing all reasonable avenues of science.

NAA and SafeMinds offer our support of Katie, both as a parent and as a board member of our respective organizations. When Katie spoke to David, she represented the thoughts of thousands of parents who believe they delivered their healthy infants to a doctor’s office for government mandated vaccines only to witness their lapse into sickness and regression into autism.

Parents bring a wealth of expertise to science and treatment discussions because they are the ones confronted on a daily basis with the needs of their children and as such, their opinions should be actively solicited and embraced. Parents like Katie add perspective and urgency. They play an essential role in directing precious resources towards the most promising ways that will most quickly improve the lives of those suffering with autism now and prevent its occurrence in the future.

In keeping with these principles, our organizations ask Autism Speaks to clarify the rationale for issuing their announcement on Katie. We ask them to assure the community that meaningful autism research on the role of the environment, including vaccines and their components, will assume dramatically greater and expedited prominence in its scientific and treatment agendas.

To view the interview between David Kirby and Katie Wright go to www.autismmedia.org

To view the recent statement from Autism Speaks regarding this interview see http://www.autismspeaks.org/wrights_statement.php
For information regarding the National Autism Association or SafeMinds go to www.nationalautismassociation.org or www.safeminds.org

NAA: Dr. Proffit's Conflict of Interest

VACCINE-INDUCED AUTISM VICTIMS IN THE THOUSANDS WILL FINALLY GET DAY IN COURT

Despite spin from pharma companies and their minions that these cases are threats to disease outbreaks, parents cite ongoing conflicts of interest as the real threat to vaccine safety and disease

Washington, DC – Hearings will begin on June 11th at the U.S. Federal Claims Court to determine if autism is linked to vaccines and their components, including the mercury-based preservative thimerosal. As the Autism Omnibus Proceeding approaches, parents of children diagnosed with autism are calling attention to the conflicts of interest they believe continue to threaten the safety of vaccines.

Among the concerns cited by parents are the close ties between pharmaceutical companies and government regulatory agencies. A July, 2003 UPI investigation revealed the following:

* In two cases in the past four years, vaccines endorsed by the CDC were pulled off the market after a number of infants and adults appear to have suffered devastating side effects, and some died. Critics now worry about a possible link between vaccines and autism, diabetes, asthma and sudden infant death syndrome, among other ailments.
* Members of the CDC's Vaccine Advisory Committee get money from vaccine manufacturers. Relationships have included: sharing a vaccine patent; owning stock in a vaccine company; payments for research; getting money to monitor manufacturer vaccine tests; and funding academic departments.
* The CDC is in the vaccine business. Under a 1980 law, the CDC currently has 28 licensing agreements with companies and one university for vaccines or vaccine-related products. It has eight ongoing projects to collaborate on new vaccines.

Dr. Paul Offit, MD, former chairman of the Advisory Committee on Immunization Practices, which guides vaccine policy decisions at the CDC, embodies the conflicts of interest concern of parents. Dr. Offit has been a long-time defender of injecting mercury, a known neurotoxin, into infants and pregnant women. He is also co-patent holder of the RotaTeq vaccine with pharmaceutical giant Merck, a funder of his research for over a decade. Offit is speaking against parents today in support of the vaccine program and pharmaceutical companies at a press conference sponsored by Every Child by Two, a group also funded by pharmaceutical companies and supportive of injecting mercury into infants.

“In my opinion, as glaring as Dr. Offit’s conflicts are, what’s even more disturbing is that such close ties between vaccine policy decision makers and vaccine manufacturers are routine,” said parent and National Autism Association board member Scott Bono. “The bottom line has become vaccine profit rather than vaccine safety. Children diagnosed with autism are suffering the consequences of an unprecedented greed, and their parents aren’t going away until the public knows the full details of this man-made disaster.”

For more information, visit www.nationalautism.org and www.putchildrenfirst.org/Quicksummary.html

Vaccines Hearings PR Out of The Gate Early

This seems to have started Friday. Both sides are issuing press releases and conference calls and articles and such. With two weeks to go.

AUTISM FAMILIES KEEP CLOSE WATCH AS FIRST TEST CASE GOES TO VACCINE COURT

Washington, DC – The first test case of approximately 4800 claims that vaccines caused autism goes to federal court June 11th. Cedillo v. HHS will be heard by three special masters, part of the U.S. Court of Federal Claims, established under the National Vaccine Injury Compensation Program (NVICP).

Parents filed the claims after their children regressed into a diagnosis of autism following multiple rounds of vaccines, many of which were preserved with amounts of mercury that exceeded EPA guidelines.

Thimerosal’s inclusion as a vaccine component increased in the early 90’s, its rise mirroring the alarming rise in autism. Parents note their children’s symptoms of autism mimic mercury poisoning and many autistic children are now being successfully treated for mercury poisoning and damaged immune systems.

Earlier today, Ann Brasher, Board Member of the National Autism Association (NAA) stated, “I believe that NVICP will not provide the specialized medical care necessary for autistic children despite a favorable ruling for the plaintiffs. But the overwhelming evidence needs to be explored. The public deserves to know all the facts and the truth behind them.” Parents cite fatal flaws in the NVICP including:

* Families are forced to sue the government, which has no incentive to settle and can drag out cases for years while children go untreated.
* Unlike civil court, there is no right to discovery in vaccine court and no jury trial.
* The master denied access to vaccine company documents and CDC/HMO vaccine database records that would be routinely available in civil court.
* Tax payers end up paying for pharmaceutical mistakes. No other industry is allowed unparalleled protection in a “Free Market” economy.
* The massively profitable vaccine industry is not held liable, therefore has no incentive to create safe vaccines.

Several families who have waited years for justice and are willing to share stories of their children’s regression will be available for interviews during the hearings. For contact information, please write to naa@nationalautism.org.

To learn more, visit www.nationalautism.org.

Contact: Amy Pisani For
Immediate Release
Phone: (860) 443-1166 May 31,
2007
E-mail: amyp@ecbt.org Every Child By Two and the Sabin Vaccine Institute
Will Brief Reporters on the Upcoming Omnibus Autism Proceeding
³Vaccine Court² Hearing Scheduled to Begin June 11, 2007

What: Leading experts will brief reporters on the upcoming Omnibus Autism
Proceeding, which is scheduled to begin June 11 at the U.S. Federal Claims
Court in Washington, D.C. The Court will hold evidentiary hearings to
determine whether autism should be deemed a possible vaccine-caused injury
under the U.S. National Vaccine Injury Compensation Program. Just over
4,800 petitioners have filed claims alleging that vaccines caused their
children's autism. The actions and decisions of the Court could have
significant legal and public health implications.

Who:
Bruce Berman, Partner, WilmerHale LLP
Peter Hotez, MD, PhD, FAAP, President, Sabin Vaccine Institute and Chair,
Department of Microbiology, Immunology and Tropical Medicine, The George
Washington University

Paul Offit, MD, Chief, Division of Infectious Diseases and Director, Vaccine
Education Center, The Children's Hospital of Philadelphia

Amy Pisani, MS, Executive Director, Every Child By Two

When: Monday, June 4 from 10:00 - 11:00 a.m.

Where: Sabin Vaccine Institute, 1889 F Street, N.W., Washington, D.C., 8th
Floor Conference Room

RSVP: Please E-mail Amy Pisani (amyp@ecbt.org ) by
Friday, June 1 and let her know whether you will be attending in person or
by phone. The dial-in number is 1-866-463-5401 or 212-457-9857 and
participant PIN code is 590870#.

###

Every Child By Two, the Rosalynn Carter/Betty Bumpers Campaign for Early
Childhood Immunization, works to ensure that all children receive timely
immunizations and continues to seek methods to institutionalize vaccine
delivery and insure access to vaccines for all children. For more
information, please visit www.ecbt.org .

The Sabin Vaccine Institute is a non-profit public organization dedicated to
saving lives by stimulating the development and distribution of vaccines
throughout the world. The Institute is committed to continuing the work of
Dr. Albert Sabin, developer of the oral live virus polio vaccine, who
envisioned the enormous potential of vaccines to prevent deadly diseases. To
learn more, visit www.sabin.org .

A-CHAMP Will Report Daily On Vaccine Hearings

A-CHAMP TO PROVIDE DAILY LEGAL REPORTING
ON CEDILLO HEARING IN VACCINE COURT

New York, New York
June 4, 2007
Contact:
Robert J. Krakow, Esq. 516-354-3300
rkrakow@earthlink.net

A-CHAMP, an organization that advocates for children with vaccine injuries and autism, is pleased to announce that it will be providing daily reporting and commentary on the proceedings in Cedillo v. The Department of Health and Human Services, the first case to be heard of the more than 4800 pending in the vaccine court’s Omnibus Autism Proceeding. The Cedillo case, which will be heard beginning June 11, 2007 by three Special Masters of the United States Court of Federal Claim will consider one theory relating to the claim that vaccines are a contributing causal factor in autism.

Mary Holland, Esq., who teaches law at New York University Law School, will be posting daily commentary on the proceedings on the A-CHAMP blog at http://achampblog.org. Ms. Holland has a child who has been diagnosed with autism but does not have a legal claim pending regarding her child’s disorder.

The goal of A-CHAMP’s reporting by Ms. Holland will be to provide incisive and accurate summaries of the proceedings. The proceedings, which are unprecedented in the history of tort litigation, have been a subject of confusion and controversy among parents. We hope that by elucidating the complexities of the proceedings parents will be placed in an improved position to understand the nature of the issues that will be decided in the vaccine court.

A-CHAMP will also be posting background articles and relevant documents on its website that will be linked to achampblog.org. As the Cedillo case proceeds A-CHAMP invites those who follow the proceedings to comment on it and on our reporting and commentary.

While it has been described as a “test” case the decision in the Cedillo case will not be binding on any other case nor is it necessarily representative of any other case. Many of the facts that likely will emerge in the Cedillo case will also very likely be unique to that case. Nevertheless, as the first legal proceeding in which the substantive claim that vaccines cause autism will be considered, the Cedillo case has historic implications.

For that reason and many others ACHAMP will be there to offer information and commentary to interested parents and others.

To register for daily audio feeds of the Cedillo proceedings go to:
http://registration.teleconferencingcenter.com/menu.php?short_name=autismphoneaudio or

http://tinyurl.com/2owrwd

To view the public documentary record of the Omnibus Autism Proceeding, obtain files containing the proceedings beginning June 11, and other relevant links go to:

http://www.uscfc.uscourts.gov/omnibus-austim-proceeding

A brief biography of Mary Holland, Esq. will be posted at achampblog.org.

Dear John Travolta,

There is no shame in Autism.

Love,
Ginger Taylor

Travolta wary of making his son's autistic condition public?
From our ANI Correspondent

New York, June 2: John Travolta is interested in having a third child, but the actor is recoiling from making his 15-year-old son's autistic condition public.

Travolta has not come out in the open to declare that his son, Jett, is autistic.

However, a magazine editor, who interviewed the actor, is of the view that if Travolta doesn't shy away from accepting the fact and comes forward, awareness about autism would get a major boost.

The editor also said that the actor should join other celebs like Sylvester Stallone, Doug Flutie, Jenny McCarthy and Toni Braxton, who all have autistic kids, in raising awareness and research funds to cure the disease.

"Travolta sits there in interviews talking about how Jett loves to read or play sports, but it is clear that the boy can barely do either," the New York Post quoted the editor, as saying.

"It's fine with me if Travolta doesn't want to become the poster child for autistic parents, but every time the parent of an autistic child hears about someone else who is in this fight, it makes them feel better. He could do so much good for autism awareness if he would just come forward," the editor added.

Travolta has either pretended that there's nothing wrong with Jett, or claimed that he has Kawasaki syndrome, a disease characterized by high fever, skin rash and swelling of the lymph nodes.

Tim Kenny, one of Travolta's neighbours, and the father of an autistic girl, revealed that Scientology is the reason behind Travolta's denial.

"Scientology is keeping him from acknowledging his son's autism. They see it as a weakness," Kenny told Mark Ebner of HollywoodInterrupted. com.

According to the Church of Scientology, people with mental illnesses are "degraded" and are capable of curing themselves by working harder on the church's teachings.

However Travolta's lawyer Marty Singer asserted that such claims are false and offensive.

"The Travoltas are wonderful, loving parents, and their priority is their children. They have [taken] and they continue to take the best possible care of their children. To suggest anything to the contrary is very hurtful to a loving family and also would be false and defamatory," Singer said.

Katie Wright Speaks for Me!

Note: Anyone wanting to send supportive emails to Katie Wright can do so through the National Autism Association at naa@nationalautism.org

Last week at Autism One I had the good fortune to be present for Katie Wright’s official coming out. FAIR Autism Media debuted the 30 minute version of their two hour piece in which David Kirby interviews Katie Wright, which she gets to tell the full story that she was not able to tell on Oprah (more on the Oprah interview to come).

It was followed by a Q&A in which Katie expressed her affection and respect for her parents for all they were trying to accomplish in ending autism, and vehement frustration with Autism Speaks scientific board. Displaying all the passion that us mom’s are usually able to work up when talking about the state of research and the head in the sand position that the medical community is in, Katie said that it is time for the AS board (who has vastly more control over the direction of research than Bob Wright) to “stop awarding research grants to their friends” and put the money into environmental and biomedical research. I am sure you can imagine the ovation that she garnered from the audience.

During that session, and in a previous one, she stated very empathetically that she understood the position of those on the board who came to AS from NAAR. That they had been working toward the genetic causes of Autism for decades and were very invested in that line of inquiry. She also praised them, saying that they were out there looking for a cause long ago when no one else was. But, she said, that “now that their children have grown, it is time for them to step aside” and allow the research to shift.

Katie also spoke several times about her father. She was asked frank questions about him and she answered them frankly. To the question as to whether or not Mr. Wright would be hesitant to look into the vaccine question because of all the ad money that pharma spends at NBC, she plainly said that it would not be the case. With her hand over her heart, she repeatedly described her father as a man of very high integrity who would not be influenced by such matters. She further said that if anyone tried to bring pressure to bear on him in that respect, “that would be a big mistake for them, it would backfire.” She spoke with conviction and I believed her.

Katie told us that her father has seen Christian’s progress and is open and interested in the biomed approach. She also said that his hands are somewhat tied as he has contractual obligations to the people at NAAR to continue their lines of research, and that the people on the board who are not open to the environmental lines will be in place for another four years.

If it were Bob Wright’s intention to ‘turn the ship’ of AS, in my estimation it will take 5 or 10 years. With the pace of biomed research moving forward at the pace it is, they may miss the party, or arrive just in time to validate the research that DAN, NAA, SafeMinds and their sister organizations are pioneering.

Have I mentioned that finding the gene that causes autism won’t cure autism, just get people who have it aborted, just like those with Downs? Just wanted to remind you.

The Wrights have issued a statement distancing themselves from their daughter:

Statement from Bob and Suzanne Wright, Co-founders of Autism Speaks

Katie Wright is not a spokesperson for Autism Speaks. Our daughter's personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks.

Autism Speaks is committed to finding the causes of and a cure for autism. We are proud of our scientifically based research programs, including those established by NAAR and CAN, and will continue to pursue them. The members of our scientific advisory teams have impeccable credentials and we fully support them. There is no question that genetics plays the leading role in autism and that environmental triggers are key issues for many children. These areas, as well as biomedical treatments, need huge research support.

Autism Speaks merged with NAAR because it believes in and supports its scientific mission, methods, and advisory board. We are proud of the accomplishments of NAAR and grateful to the families and volunteers who created it. They are a tremendously valued part of Autism Speaks. We welcome input from volunteers and parents/guardians of children with autism of all ages, including adults with autism. We apologize to our valued volunteers who were led to believe otherwise by our daughter's statement.

Not kind to Katie. I am sure it was to smooth ruffled feathers on the board of AS. However, The Wrights need to understand that the tide has turned. Just like their grandson, our children regressed following vaccination and get better under the DAN protocol.

It is time for Autism Speaks, to Listen.

So I will be respectfully writing to the Wright’s this week to let them know that their daughter speaks for me. I encourage you to join me and write to them, copying your letter to the scientific board. Put in the subject line: “Katie Wright Speaks For Me” and tell them your story, and what specific causes and interventions are relevant in your case and what you want them to research.

Autism Speaks
2 Park Avenue
11th Floor
New York, NY 10016

Bob Wright - Co-founder
Suzanne Wright - Co-founder
Gary W. Goldstein, M.D. - Chair, Scientific Affairs Committee
Mark Roithmayr - President
Peter H. Bell - Executive V.P. - Programs and Services

Let’s let Autism Speaks live up to their commitment to listen to all parents.

Thank You Katie. Again.

UPDATE: The Wright's statement on the AS web site has been since it was first posted:

Old statement:

Katie Wright is not a spokesperson for Autism Speaks. Our daughter's
personal views differ from ours and do not represent or reflect the
ongoing mission of Autism Speaks. Her appearance with David Kirby was
done without the knowledge or consent of Autism Speaks.

New statement:

Katie Wright is not a spokesperson for Autism Speaks. She is our
daughter and we love her very much. Many of Katie's personal views
differ from ours and do not represent or reflect the ongoing mission
of Autism Speaks. Her appearance with David Kirby was done without the
knowledge or consent of Autism Speaks.

UPDATE:

David Kirby comments on the rift caused by the interview:

Katie is an amazing person, and her parents are great people. They're a great family, a terrible thing happened to them [Christian's severe autism], and they're dealing with it as best as possible under a glaring spotlight. My intention is not to create any kind of rift - but I had to ask her some tough questions about the foundation that was created in her child's name. She went out of her way to defend Autism Speaks and her parents. [But she did make the comment] that the older generation of parents who helped create NAAR (the National Association for Autism Research) and focused on genetics should perhaps step aside and let younger parents try something new.

She praised them for starting NAAR - and I don't think she intended anything malicious - but umbrage was taken by parents, volunteers, and donors from NAAR who didn't appreciate Katie's comment. But it was heartfelt and sincere. I feel terrible personally that this came back in a negative way - that a rift was created in the family. People ask if I'm going to blog about this and I say no, I think I've cause enough trouble for this week - kids should not be estranged from their parents or grandparents!

Does that last line mean that Katie is estranged from her parents over this?

UPDATE: Sara at FAIR Autism Media reports that, "Katie didn't betray her parents. Her parents saw the video before it's release and even asked for a few edits... Katie views her parents in the highest regard and would never intentionally try to hurt them or what they are trying to accomplish in the autism community. Listening to Katie's comments, the Wrights sound like a very close family and I'm certain they're working things out."

Does Suffering Have Any Value?

Mark Pickup is a man with MS (triplegic) who knows God and the value of suffering.

Conflict of Interests in the Wakefield Conflict of Interest Case

As I have mentioned before, I have not focused on the Andrew Wakefield/MMR controversy because Chandler never got the MMR and so that research is on the back burner for me. This article was just to much for me to pass up posting though.

The Wakefield Case is a carnival of conflict of interests with his accusers breaches vastly eclipsing those that they accuse Dr. Wakefield of. The irony would be hilarious were it not destroying a good man who has gone above and beyond for our kids, and holding at bay progress that would be made in understanding our children's illnesses.

I have heard Dr. Wakefield present three times, and have been impressed. He is a humble man, he backs up what he says with research, he is reticent to make claims about topics that are not fully explored yet, and most importantly, he presents case after case of successfully treated autistic children who came to Thoughtful House with horrible bowel issues and who became healthier and more functional when they were able to resolve those issues.

If we could afford it I would be in Texas getting Chandler scoped.

Good thing that these kind of secret hearings and dual relationships shenanigans don't exist here in the US.

GMC Challenged On MMR Inquiry Chief's Vaccine Firm Links

London, England & Scotland/29 May 2007/JWock/ The Chairman of the General Medical Council's inquiry into MMR vaccine doctor Andrew Wakefield, Professor Dennis McDevitt, is being challenged over undisclosed personal interests. On 11th July this year an unprecedented 14 week GMC hearing chaired by Professor McDevitt was due to commence into charges against Dr Andrew Wakefield of the Royal Free Hospital relating to the controversial vaccine. However, previously secret government minutes reveal Professor McDevitt was himself a member of a 1988 government safety panel which approved Pluserix MMR as safe for vaccine manufacturer Smith Kline & French Laboratories (see first .pdf attached). Pluserix MMR (measles, mumps and rubella) vaccine was introduced in 1988 but the Government was forced to withdraw it in November 1992 after large numbers children suffered suspected adverse vaccine reactions.

This development follows the recent discovery that High Court Judge Sir Nigel Davis, who in a secret hearing rejected the MMR childrens' appeals against withdrawal of legal (see second .pdf attached), failed to disclose his brother was main board director of the MMR vaccine manufacturer's parent company GlaxoSmithKline (more below).

The GMC hearing against Dr Wakefield relates to events in 1998, seven years after legal investigations into the MMR childrens' ailments first started. Dr Wakefield angered MMR vaccination proponents and created a furore in 1998, when he suggested offering single vaccines alongside MMR - albeit that is current official Conservative party policy.

Nearly 2000 children alleged to be suffering from autism, deafness, bowel disorders and other serious injuries caused by the vaccine filed legal claims against manufacturer Smith Kline & French Laboratories Ltd. Investigations into the claims started in 1991 when applications for legal aid were first being filed. The vaccine was given to 85% of MMR vaccinated children between 1988 and 1992. Labour MP Jack Ashley said at the time of the 1992 withdrawal that correspondence with Minister Virginia Bottomley MP confirmed government knew of the problems in March 1991, some 18 months earlier.

The GMC's inquiry into Dr Wakefield is said to include conflicts of interest alleged by the Sunday Times in 2004. Dr Wakefield was retained as an expert witness in the legal claims. It was alleged Dr Wakefield failed to disclose payments made by lawyers to the Royal Free when his team published a paper in the Lancet medical journal concerning medical investigations into the children's illnesses. Final charges have yet to be published. GMC hearings are often less than a day and usually no more than two or three days.

Other safety panel members who approved the vaccine included controversial paediatrician Professor Sir Roy Meadow, Government vaccination supremo Dr David Salisbury, Dr Elizabeth Miller of the Health Protection Agency, and Joint Committee on Vaccination and Immunisation member and Chairman Professor Sir David Hull.

Dr Miller is also an expert witness for the Glaxo companies defending the children's claims. She has stated "there can be no conflict of interest when acting as an expert for the courts, because the duty to the courts overrides any other obligation, including to the person from whom the expert receives the instruction or by whom they are paid ". Dr Miller has also published in The Lancet without disclosing funding from drug companies and still without complaint from the Editor. Wakefield disclosed his status as an expert witness funded by legal aid in a letter to the Lancet in 1998 - six years earlier so this was known to The Lancet.

Barrister Robert Hantusch in a letter to the Times of 24 February 2004 said "The courts do not consider that the engagement of someone to act as an expert witness in litigation has the effect that that person is then biased. Indeed, if this were the legal position, no paid professional could ever at any time give evidence to a court."

A challenge is also being mounted against the withdrawal of the childrens' legal funding in 2004 concerning High Court Judge Sir NigelDavis failure to disclose his brother was main board director of the MMR vaccine manufacturer's parent company GlaxoSmithKline plc and Chief Executive of the Lancet medical journal. Judge Davis' brother is Sir Crispin Davis (57).

Furious parents who filed complaints with MPs and the Office for Judicial Complaints, which investigates the conduct of judges and coroners are told to expect a response this week..

Judge Davis' spokesman Peter Farr of the Judicial Communications Office said "The possibility of any conflict of interest arising from his brother's position did not occur to him. If he was wrong, any possible remedy must be sought from the Court of Appeal.".

Multinational drugs giant GlaxoSmith Kline appointed Sir Crispin Davis as non executive director 1 July 2003. Three months later the Legal Services Commission were due to decide on the MMR childrens' funding and made the contested decision on 4th October 2003. Five months later Judge Davis rejected appeals against the LSC's decision. The reasons remain secret. Parent Ann Hewitt claims " We have been dumped. Legal advice says Thomas has a strong case, but legal aid was mysteriously taken away." However, parent Marion Wickens, who also claims her severely injured 13-year-old daughter's legal case was strong, said in a later open court hearing that a senior LSC official admitted the decision to stop Legal Aid " came from the government" (see third .pdf attached).

Sir Crispin Davis is unlikely to be a stranger to controversy over the MMR vaccine. He is Chief Executive of the owners of the "The Lancet" medical journal. In 1998 The Lancet published the now controversial study by Dr Andrew Wakefield's Royal Free Hospital London research team into links between autism and the MMR vaccine. Wakefield sparked a furore with the government later to involve Prime Minister Tony Blair when at a March 1998 press conference he suggested single measles jabs be made available alongside MMR.

Six years after the publication of the Lancet paper, in February 2004 and only a week before Judge Nigel Davis's rejection of the childrens' funding appeal, The Lancet Editor, Richard Horton disclaimed the Royal Free paper, claiming Wakefield had failed to disclose a conflict of interest over funding by the Legal Services Commission. Premier Blair was quoted at the time " There's absolutely no evidence to support this link between MMR and autism". Horton expressed public regret for publishing the Royal Free paper and Sir Crispin Davis was knighted three months later.

Parent John Stone comments "A major unexplained mystery is why the issue of what measles vaccine was given to children should have been so political. There was, after all, a perfectly acceptable, cheaper and more effective measles vaccine then available. "

Current Conservative Shadow Health Minister Andrew Murrison says "The last time we commented on this we said that MMR would be routinely recommended (the CMO believes it to be safe) but if refused the single jab would be available. We haven't changed that position. "

Today the issue remains mired in confusion and contradictions. Parent Elaine Butler demands an inquiry "We believe the evidence shows very clearly that our children were damaged by this vaccine. If it was so important to the government, then they should have ensured the case went to trial with full funding so everyone could see the evidence in open court. The additional amount that would cost compared to all the money spent by the government and NHS on attacking Wakefield and promting MMR is trivial . And the irony is, we now learn that 2007 is the year the chance of anyone catching measles and dying became vanishingly small. People in the UK are 60 times more likely to be hit by lightning than killed by measles and the official government
figures show that disparity will continue to increase over time ".

INFORMATION FOR EDITORS:

For the curious politics of MMR see - Top doctor wades into MMR debate BBC - Monday, 23 February 2004

Some of the MPs known contacted by parents include:-
Norman Baker
Stewart Jackson, Peterborough,
Shona Robinson (SNP health minister with autistic daughter)
Sir Robert Smith, Aberdeenshire West & Kincardine
Lynne Featherstone
Alex Salmond
Chris Mullin

For in-depth analysis of the controversy see:-
"MMR - SCIENCE AND FICTION": the Richard Horton story BMJ John Stone
24 Sep 2004
"MMR - SCIENCE AND FICTION": the Richard Horton story II BMJ John
Stone 26 Sep 2004
"MMR - SCIENCE AND FICTION": the Richard Horton story III BMJ John
Stone 30 Sep 2004
"MMR - SCIENCE AND FICTION": the Richard Horton story IV BMJ John
Stone 1 Oct 2004
"MMR - SCIENCE AND FICTION": the Richard Horton story V BMJ John Stone
1 Oct 2004
"MMR - SCIENCE AND FICTION": the Richard Horton story VI BMJ John
Stone 3 Oct 2004

========== Contact information
Peter Farr
Judicial Communications Office
Thomas More Bldg 11.07
Royal Courts of Justice
Strand, London WC2A 2LL

www.judiciary.gov.uk

Listening in on the Vaccine Hearings

For anyone who wants to listen to the Vaccine Omnibus Hearings that begin on June 11th, Jeff Sell has passed on the link to register.

http://www.uscfc.uscourts.gov/omnibus-austim-proceeding

Holy Crap... I Forgot About The Zinc!

We upped Chandlers zinc at the beginning of the week! I forgot about that when I started getting excited about Chandler's huge improvements this week.

So week 4 of the SCD diet his improvements were steeper than weeks 1-3 probably because we upped his zinc.

Yay for zinc!

"March 11"

Scott called this morning to update me on what is up with Chandler.

Scott was making breakfast and thought he would just ask Chandler a random question. He said, "Chandler, do you know what day your birthday is?"

Chandler replied, "March 11".

Until know we had no way of knowing if he even understood the concept of a birthday. We knew he understood birthday parties have cake and they were damn good things, but that is it.

I told Scott to get out the video camera stat and start getting this stuff on record. Hopefully if I have enough time I can cut something together that shows him before and after the SCD diet.

Incidentally I am here hanging with two moms, both of who tried the SCD diet on their kids with little result, and they tried it for six months and one year, so clearly this diet is not a magic bullet for every child, but it seems as if it is another piece of Chandler's puzzle.

UPDATE:

I forgot that we upped Chandler's zinc at the beginning of the week. Check this.

Not Blogging Autism One

So I have been here for two days and I had to make the choice between trying to drinking all the information I could from the fire hose and writing about it. I choose the former.

but...

I will keep you updated on the crazy breakthroughs of my baby boy.

Stay tuned.

“Five”.

So I am at Autism One and I am no longer at Autism One.

I am a thousand miles away back in Maine.

Scott just called me and said, “Are you holding on to your pants?” Then he told me the best thing I ever heard ever.

He took Chandler to pick up his older brother from school. Scott was standing the lobby holding Chandler when the guidance counselor walked by. She knows our family and knows that Chandler is autistic and will be coming to school next year, but had not met him yet and did not know the severity of his disability.

She stopped to say hello, and Scott introduce him. She turned to him and said, “Hello Chandler, how old are you?”

Chandler stuck out his hand with all his fingers spread and said, “Five”.

I DIDN’T EVEN KNOW THAT HE KNEW HOW OLD HE WAS!

I am in tears! I am absolutely HIGH right now!

UPDATE:

The hits just keep on coming.

UPDATE:

I forgot that we upped Chandler's zinc at the beginning of the week. Check this.

Blogging Autism One

Hello from Chicago. I will be blogging from Autism One for the next three days, and if I can get wifi in the conference rooms, I will be live blogging.

So check back in this weekend.

Simpsonwood Remembered

From the National Autism Association and Mom's Against Mercury:

The Simpsonwood Remembered Rally is getting close!

Join us on June 8th, at the CDC in Atlanta Georgia, in remembrance of the anniversary of the infamous CDC meetings at Simpsonwood and to celebrate and support the United Methodist Women's Division.

Also join us for a poolside meet and greet at the Emory Inn on Thursday June 7th at 7pm (straight through the front doors and outside to the courtyard). T-shirts and magnetic car ribbons will be sold there. T-shirts are $15.00 and the magnetic car ribbons $7.50. We will be raffling off some T-shirts and ribbons at 8pm. Both T-shirts and ribbons are of limited quantity.

Just a reminder that we will be meeting the morning of June 8th at 6:15am in the Emory Inn parking lot (1641 Clifton Road, Atlanta, GA).

Thank you all for your continued support and hope to see you there!

For more rally information: http://www.momsagainstmercury.org/rally-simpsonwood.htm

For more information about the infamous Simpsonwood meetings held June 7-8, 2000 please go to:
www.PutChildrenFirst.org and www.NoMercury.org

Judicial Watch Uncovers Three Deaths Relating to HPV Vaccine

Judicial Watch Uncovers Three Deaths Relating to HPV Vaccine
Event Reports Obtained from FDA Detail 1,637 Adverse Reactions to Gardasil

(Washington, DC) -- Judicial Watch, the public interest group that investigates and prosecutes government corruption, today released documents obtained from the U.S. Food and Drug Administration (FDA) under the provisions of the Freedom of Information Act, detailing 1,637 reports of adverse reactions to the vaccination for human papillomavirus (HPV), Gardasil. Three deaths were related to the vaccine. One physician’s assistant reported that a female patient “died of a blood clot three hours after getting the Gardasil vaccine.” Two other reports, on girls 12 and 19, reported deaths relating to heart problems and/or blood clotting.

As of May 11, 2007, the 1,637 adverse vaccination reactions reported to the FDA via the Vaccine Adverse Event Reporting System (VAERS) included 371 serious reactions. Of the 42 women who received the vaccine while pregnant, 18 experienced side effects ranging from spontaneous abortion to fetal abnormities.

Side effects published by Merck & Co. warn the public about potential pain, fever, nausea, dizziness and itching after receiving the vaccine. Indeed, 77% of the adverse reactions reported are typical side effects to vaccinations. But other more serious side effects reported include paralysis, Bells Palsy, Guillain-Barre Syndrome, and seizures.

“The FDA adverse event reports on the HPV vaccine read like a catalog of horrors,” stated Judicial Watch President Tom Fitton. “Any state or local government now beset by Merck’s lobbying campaigns to mandate this HPV vaccine for young girls ought to take a look at these adverse health reports. It looks as if an unproven vaccine with dangerous side effects is being pushed as a miracle drug.”

Judicial Watch filed its request on May 9, 2007, and received the adverse event reports from the FDA on May 15, 2007. Judicial Watch has posted the adverse event reports.

(A recent study, published in the New England Journal of Medicine, also questioned the general effectiveness of Gardasil.)

Click here to view the Garadsil Related Deaths Reported to VAERS as of May 11, 2007

Click here to view the Vaccine Adverse Event Reporting System (VAERS) Reports as of May 11, 2007

Autistic Inventor At Work Redux

Ladies and Gents, the second patent that Chandler will be applying for will be The Dental Floss Belt.

Autistic Adults Lack Services

Anne Dachel won the Age of Autism Award last year for her tireless advocacy for our kids.

In an email today she calls attention to the lack of services for adults with autism.

What will happen when the autistic children of Chandler's generation no longer have their parents to care for them?

Before I drive myself crazy here, let me send this. These scary stories about the lack of services are out every single day. They're local and state items. They'll sometimes use the words "crisis" and "epidemic"---but never with a demand for answers. Only rarely do reporters project that the situation will get worse as these kids age out.

With the medical community diagnosing more and more autism, patting themselves on the back for doing it earlier and earlier but with no alarm, and federal officials promoting the myth that there is no increase and that autism is genetic............I truly think that no bad how bad the situation gets, doctors and health officials will continue to pretend it just isn't happening.

We'll have disabled people in the streets with nowhere to go eventually when mom and dad are no longer there.

I have to laugh........every year John who's now twenty, gets a letter from the county telling him his status on the waiting list....

last year, he was #42....this year, he's #36............

I honestly don't know what happens when he gets to be #1..........there are no services in the area for autistic adults.

Anne

Wait Is All Many Disabled Can Do
The Ledger, FL

"We're going to put people in crisis," said Debra Dowds, executive director of the Florida Developmental Disabilities Council. "We recognize there needs to be some changes. The problem is the level they've done is way too severe."

Treating Autism at the Marcus Institute
WXIA-TV, GA

Autism Spectrum Disorder is at a crisis level and the Marcus Institute and Easter Seals of north Georgia are two places trying to help autistic children and their families.

When 'the cuteness is gone'
Bridgewater Courier News, NJ

Much of the media attention focused on autism is directed at children -- but once a child is 21, the state no longer mandates any services to be provided, and a person with autism is on his or her own.

As the growing number of autistic children in New Jersey grows up, parents and service providers are worried about the supply of public resources to help autistic adults live, work and interact with the community with independence and dignity.

Autism epidemic being ignored

Daily Telegraph, Australia

Autism's Angels: Women Start School for Children with Autism
First Coast News, FL

Virginia fails to provide care for children with autism
Fauquier Times-Democrat, VA

People with autism with no other qualifying "label" are eligible for services under the Developmental Disability Waiver. And guess what? That waiting list is also years long. Children do not have three to five years to wait until their slot is open.

Children should not be on 'waiting list' for services
Central Maine Morning Sentinel, ME

Families struggle to care for the mentally disabled
Victoria Advocate, TX

The Texas Legislature is looking at funding that could impact families like the Sausedas, who were on a waiting list for 11 years before finally receiving mental health support for the twins in 2005. Local mental health caregivers, meanwhile, are waiting to learn if 212 other area families can similarly finally stop waiting this year.

Parents plead for aid from county services
Appleton Post Crescent, WI

Group works to help the developmentally disabled
Baltimore Examiner, MD
"There's a bit of a debate over whether that's just a more exact diagnostic capability [or an actual rise]," Morgan said. "Regardless, it's clearly a condition that's increasingly presenting itself for care and treatment."