[NVIC] New York Times: Autism Debate Strains Families

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NVIC E-news

" No parent or grandparent could read the article about dissension within

families with autistic children without deep sadness. Although the causes

for regressive autism are most likely multifactoral, one possible co-factor

- vaccination - stimulates the most intense debate. Like any other medical

intervention, vaccination carries a risk that is greater for some than for

others, a fact confirmed in 1991 and 1994 by the Institute of Medicine in

historical reviews of the medical literature. But all of the potential

biological mechanisms and genetic or other high-risk factors involved have

not been identified. It is important to support the quest for answers led

by parents whose children suffer with brain and immune system dysfunction.

All potential causes should be explored and re-examined in the search for

why some healthy children suddenly regress and become autistic. Science,

like opinion, evolves over time. " - Barbara Loe Fisher, New York Times

" A year after their grandson Christian received a diagnosis of autism in

2004, Bob , then chairman of NBC/Universal, and his wife, Suzanne,

founded Autism Speaks, a mega-charity dedicated to curing the dreaded

neurological disorder that affects one of every 150 children in America

today. The s' venture was also an effort to end the internecine

warfare in the world of autism - where some are convinced that the disorder

is genetic and best treated with intensive therapy, and others blame

preservatives in vaccinations and swear by supplements and diet to cleanse

the body of heavy metals.......The s' daughter, , the mother of

Christian, says her parents have not given enough support to the people who

believe, as she does, that the environment - specifically a synthetic

mercury preservative in vaccines - is to blame. No major scientific studies

have linked pediatric vaccination and autism, but many parents and their

advocates persist, and a federal " vaccine court " is now reviewing nearly

4,000 such claims. The feud has played out in cyberspace and spilled

into Autism Speaks, where those who disagree with 's views

worry that she is setting its agenda. And the family intent on healing a

fractured community has instead opened its old wounds and is itself riven. "

- Jane Gross and Strom, New York Times

Barbara Loe Fisher Commentary:

For more than two decades, the National Vaccine Information Center,

co-founded in 1982 by parents of vaccine injured children, has advocated

that a portion of the billions of taxpayer-supported research funds at NIH

be used to fund methodologically sound scientific research into the

biological mechanisms and high risk factors for vaccine-induced brain and

immune system dysfunction. At no time is that research more needed than

today, when millions of America's children are suffering with learning

disabilities, attention deficit hyperactivity disorder (ADHD), autism,

asthma, diabetes and other types of chronic illness and disability and the

reports of regression following vaccination continue.

Recent calls by physician leaders in the fields of pediatrics and public

health, including the influential Institute of Medicine in 2004, to end all

research into vaccine-associated regressive autism, are not only premature

but extremely unwise. While reasonable men and women can disagree about

various scientific hypotheses regarding the plausible biological mechanisms

and genetic factors involved when children regress after vaccination, the

most intelligent course of action that can be taken at this critical

juncture is to refrain from closing the door on any of those hypotheses. It

may well turn out that every one of them is a co-factor, depending upon the

individual child and the vaccine(s) involved.

The best way to find out why some children regress physically, mentally and

emotionally after vaccination is for parents and physicians to keep an open

mind about all possible reasons for the child's sudden health

deterioration. If parents and physicians would become partners, rather than

remain adversaries, in the search for answers to the most important public

health question of our time, the answers would come much more quickly.

It is important for all cases of regression and health deterioration

following vaccination to be reported to the federal Vaccine Adverse Events

Reporting System (VAERS) and to NVIC's Vaccine Reaction Registry . Families

who speak out about what happened to their child following vaccination are

helping to raise public awareness that will, eventually, lead to

appropriate scientific inquiry. You can post a report with or without a

photo about what happened to your child (or other family member) after

vaccination on NVIC's International Memorial for Vaccine Victims.

VM

LETTERS TO THE EDITOR

New York Times

June 25, 2007

http://www.nytimes.com/2007/06/25/opinion/l25autism.html?_r=1 & oref=slogin

Autism: What Research Is Needed? (7 Letters)

To the Editor:

Re " Debate Over Cause of Autism Strains a Family and Its Charity " (front

page, June 18):

As the parent of a 23-year-old son whose autism was in evidence before

vaccinations, I know what it feels like to hear that the cause of your

child's lifelong disability is " unknown " and that he or she is " untreatable. "

For years I listened to the snake-oil salespeople and tried treatments that

no thinking person would consider. I understand why clings to

the belief that her son's autism was caused by synthetic mercury

preservatives in vaccines.

While Ms. is entitled to her beliefs, too many questions remain

unanswered. Hundreds of thousands like my son are waiting for Autism

Speaks, the charity founded by Bob and Suzanne , to promote the solid

science necessary to fully explain the causes and recommend treatment for

this confounding disability.

Annie Lubliner Lehmann

West Bloomfield, Mich., June 19, 2007

·--------------------------------------------------------------------

To the Editor:

Autism researchers are only beginning to assemble a wealth of observational

details into a coherent theory of what causes autism.

Different subsets of these observations can evoke competing testable

hypotheses (which are healthy for science) and competing ideologies (which

are not).

As your article notes, the vaccine idea has been epidemiologically tested

and not borne out. It seems time to move on.

I worry, though, that this vaccine controversy has steered the field away

from environmental causes in general. As a brother and uncle to two people

with autism, I am keenly aware of the role of genetics. But genes can

affect responses to the environment, and the environment can influence gene

expression, making the genetic-environmental dichotomy a false one.

One truth our work has taught us is that the perturbations of brain

development that lead to autism are usually the product of multiple

interacting causes. Surely autism research has room for all of these, and

for all of us.

Belmonte

Ithaca, N.Y., June 18, 2007

The writer is an assistant professor of human development at Cornell

University.

·--------------------------------------------------------------------

To the Editor:

A key fact should be noted in the suspected link between the current autism

epidemic and mercury in vaccination shots.

It has been known for a very long time that mercury is a potent neurotoxin

that severely damages the brains of humans, especially developing children.

That is why the federal and state governments warn against eating fish with

traces of this deadly metal.

How is it possible to inject mercury into millions of infants and pregnant

women in childhood and flu vaccinations and not damage the brains of some

of these children?

Regenstein

Atlanta, June 18, 2007

The writer is the author of books about health and the environment.

·--------------------------------------------------------------------

To the Editor:

There is one area that the Autism Speaks charity should be focusing on: the

importance of an inclusive education for people with autism.

Millions of dollars are being spent on researching the " cure " for this

disorder. How much goes into ensuring uniform and complete compliance with

federal education laws?

Why not put some of those dollars into school inclusion programs? The

routine segregation of people with autism defies logic. Being segregated

from their school communities leads to a life of exclusion and loneliness

for many.

Yes, it would be great to find the cause and a cure. But it would really be

great if my son were truly accepted as a full member of his community.

Joan B. McCarty

Grosse Pointe Park, Mich., June 18, 2007

·--------------------------------------------------------------------

To the Editor:

I am the mother of a 15-year-old boy with autism. I don't know if there is

a link between vaccines and autism.

I do know, however, that after my son's 18-month battery of shots, he

became sick. I know that I called our pediatrician, who dismissed my calls

because in her opinion the symptoms were not those she would expect as side

effects.

I also know that in the three months after the shots, we visited doctors

many times because my son experienced all sorts of medical problems, from

ear infections to pneumonia and bronchitis.

I am skeptical of the blind defense of vaccines. I believe that medical

professionals haven't done as much as they should to investigate complaints

and that they tend to play down possible evidence that would undermine the

safety of vaccines.

Parents are right to demand accountability from the pharmaceutical

industry. They are the force behind safer vaccines in the future.

Hrabowski

Norwood, Mass., June 18, 2007

·--------------------------------------------------------------------

To the Editor:

The arguments surrounding the charity Autism Speaks point to a fundamental

problem: resources are going primarily for research and researchers, and

not for those who have autism.

The first wave of the so-called autism epidemic is now reaching adulthood.

The urgent need for job training, job placement, socialization and housing

must be met if high-functioning people with autism are to become productive

members of our society.

As the mother of an autistic child now reaching adulthood, I have been

studied and probed, and have witnessed batteries of tests on my son. We are

grateful for the attention. But what do we do now?

We need to reshape the paradigm so that there is an emphasis on helping

autistic people move into adulthood - not just with more studies, but with

practical programs for real people.

Margot Fassler

Guilford, Conn., June 19, 2007

·--------------------------------------------------------------------

To the Editor:

No parent or grandparent could read the article about dissension within

families with autistic children without deep sadness. Although the causes

for regressive autism are most likely multifactoral, one possible co-

factor - vaccination - stimulates the most intense debate.

Like any other medical intervention, vaccination carries a risk that is

greater for some than for others, a fact confirmed in 1991 and 1994 by the

Institute of Medicine in historical reviews of the medical literature. But

all of the potential biological mechanisms and genetic or other high-risk

factors involved have not been identified.

It is important to support the quest for answers led by parents whose

children suffer with brain and immune system dysfunction. All potential

causes should be explored and re-examined in the search for why some

healthy children suddenly regress and become autistic. Science, like

opinion, evolves over time.

Barbara Loe Fisher

President and Co-founder

Natl. Vaccine Information Center

Vienna, Va., June 19, 2007

---------------------------------------------------------------------

Autism Debate Strains a Family and Its Charity

The New York Times

June 18, 2007

By JANE GROSS and STEPHANIE STROM

Click here for the URL: (registration required)

A year after their grandson Christian received a diagnosis of autism in

2004, Bob , then chairman of NBC/Universal, and his wife, Suzanne,

founded Autism Speaks, a mega-charity dedicated to curing the dreaded

neurological disorder that affects one of every 150 children in America today.

The s' venture was also an effort to end the internecine warfare in

the world of autism - where some are convinced that the disorder is genetic

and best treated with intensive therapy, and others blame preservatives in

vaccinations and swear by supplements and diet to cleanse the body of heavy

metals.

With its high-powered board, world-class scientific advisers and celebrity

fund-raisers like Jerry Seinfeld and Simon, the charity was a powerful

voice, especially in Washington. It also made strides toward its goal of

unity by merging with three existing autism organizations and raising

millions of dollars for research into all potential causes and treatments.

The s call it the " big tent " approach.

But now the fissures in the autism community have made their way into the

family, where father and daughter are not speaking after a public

battle over themes familiar to thousands of families with autistic children.

The s' daughter, , the mother of Christian, says her parents

have not given enough support to the people who believe, as she does, that

the environment - specifically a synthetic mercury preservative in vaccines

- is to blame. No major scientific studies have linked pediatric

vaccination and autism, but many parents and their advocates persist, and a

federal " vaccine court " is now reviewing nearly 4,000 such claims.

The feud has played out in cyberspace and spilled into Autism

Speaks, where those who disagree with 's views worry that she

is setting its agenda. And the family intent on healing a fractured

community has instead opened its old wounds and is itself riven.

The rift began in April when put herself squarely on the side of " The

Mercurys, " as that faction is known, on Oprah Winfrey, where she described

how her talkative toddler turned unresponsive and out-of- control after his

vaccines and only improved with unconventional, and untested, remedies.

In a Web interview with Kirby, author of the controversial book,

" Evidence of Harm: Mercury in Vaccines and the Autism Epidemic, " Ms.

lashed out at the " old guard " scientists and pioneering autism families. If

the old-timers are unable to let go of " failed strategies, " she said, they

should " step aside " and let a new generation " have a chance to do something

different with this money " that her parents' charity was dispensing.

Complaints poured in from those who said Ms. 's remarks were

denigrating.

So, in early June, Bob and Suzanne repudiated their daughter on the

charity's Web site. " is not a spokesperson " for the

organization, the s said in a brusque statement. Her " personal views

differ from ours. " The s also apologized to " valued volunteers " who

had been disparaged. Told by friends how cold the rebuke sounded, Mrs.

belatedly added a line saying, " is our daughter, and we love

her very much. "

Ms. called the statement a " character assassination. " She said she

had not spoken to her father since. Ms. continues to spend time with

her mother, but said they had not discussed the situation.

" I totally respect if her feelings were hurt, " Mrs. said. " But a lot

of feelings were hurt. A lot. "

Now other autism families who hoped to put their differences aside are

shouting at each other in cyberspace. " Our struggle is not and should not

be against each other, " said Ilene Lainer, the mother of an autistic child

and the executive director of the New York Center for Autism.

The big tent approach of Autism Speaks appealed to Mel Karmazin, chief

executive of Sirius Radio and an early board member and contributor. " If

you look at what projects Autism Speaks has funded, we are agnostic, " he said.

Mr. Karmazin, who also has an autistic grandson, added, " I never wanted to

look my grandson in the eye and tell him I'm taking just one viewpoint or

that I think it had to be genetic. "

Bob and Suzanne are sympathetic to 's plight, having witnessed

Christian's sudden regression and his many physical ailments, mostly

gastrointestinal, which afflict many autistic children.

The boy did not respond to behavioral therapies, the s said, leading

to their daughter's desperate search for anything that might help. " When

you have that sense of hopelessness, and don't see results, you do things

that other people think is too risky, " Mr. said. " The doctors say,

'Wait for the science.' But you don't have time to wait for the science. "

The s agreed to disagree with most of 's views. But her public

attack on other parents crossed a line, Mr. and Mrs. said in

separate telephone interviews.

" I know my daughter feels deeply that not enough is being done, " Mr.

said. " The larger issue is we want to be helpful to everyone, and to do

that we need information, data, facts. "

Some in the traditional scientific community worry that Autism Speaks has

let Ms. 's experience shape its agenda. She scoffs at the notion. Her

parents, she said in a telephone interview, are " courageous " and " trying

very hard, " but have been slow to explore alternative approaches.

" You can say it and say it and say it, " she said. " Show me evidence that

they're actively researching vaccines. "

The family's fight has captured the attention of the bloggers, who

are now questioning everything from its office lease to how it makes

grants. The charity rebutted the bloggers' accusations of improprieties in

interviews with The New York Times, which examined its IRS forms and read

relevant sections to Gerald A. Rosenberg, former head of the New York State

attorney general's charities bureau. He said nothing he reviewed was untoward.

The most distinctive aspect of Autism Speaks is its alliance with Autism

Coalition for Research and Education, an advocacy group; the National

Alliance for Autism Research, devoted to scientific research into potential

genetic causes, with high standards for peer review; and Cure Autism Now,

which has championed unconventional theories and therapies.

Which wing of the merged charity is ascendant? Some establishment

scientists and parents now fear it is The Mercurys. They point to Cure

Autism Now's having more seats than the National Alliance does on the board

of directors and the growing number of research projects that focus on

environmental causes.

At a recent benefit gala, featuring Bill Cosby and Toni Braxton, some in

the audience were surprised when Mr. announced that all proceeds

would go toward environmental research, which generally includes vaccines.

But a list of current research grants on the Autism Speaks Web site

suggests that the s, while walking a fine line, are leaning toward

genetic theories.

From 2005 to 2007, the charity sponsored $11.5 million in grants for

genetic research (compared with $5.9 million by all its partners between

1997 and 2004). It sponsored $4.4 million in environmental research (down

from $6 million granted by the partners in the previous seven years). And

many of the environmental studies explore what is known as the double-hit

hypothesis: That the genes for autism may be activated in some children by

exposure to mercury or other neuro-toxins.

Bob and Suzanne say their two-year immersion into the world of

autism has been an eye- opener, especially the heated arguments worthy of

the Hatfields and McCoys.

Mrs. is aware that the marriage of the Alliance and Cure Autism Now,

for instance, could fall apart over opposing ideologies. " I'm not going to

let it, " she said. " The truth will rise to the top. "

She is also aware that the rift in her own family needs repair: On Friday,

her daughter posted a message on an autism Web site questioning their

" personal denouncement of me. "

Yet Mrs. is confident that " we'll work our way through this. "

Autism, she said " has done enough damage to my family. I'm not letting it

do any more. "

*************************************************************

National Vaccine Information Center

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founder.

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Sheri Nakken, R.N., MA, Hahnemannian Homeopath

Vaccination Information & Choice Network, Nevada City CA & Wales UK

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