WHY THE AUTISM SPEAKS BLACKOUT ON JENNY AND DAN!?

[Guest guest]

WHY THE AUTISM SPEAKS BLACKOUT ON JENNY AND DAN!?

By

4/4/08

Like tens of thousands of parents I watched history being made

on " Larry King " Thursday night. McCarthy held up the AAP's

1983 infant and toddler immunization schedule and the 2008 schedule

and said what all of us have known for years, " too much, too soon. "

We can no longer play russian roulette with our babies' developing

central nervous systems. As Kirby so eloquently said, " the debate is

over, after the Polings concession, it is a fact that vaccines can

trigger autism. " Newsflash- AAP- mitochondrial disorders among ASD

kids are neither rare or in most cases, pre-existing. My child has a

mito disorder too. They are triggered by too many vaccines at too

young an age, overloading a developing immune system.

I almost felt sorry for Dr. Tayloe, the routing he endured was

painful to watch, yet well deserved.

His cohort, Dr. Karp, spoke about or families' concerns about over

vaccination in his usual disrespectful manner. We are not anti-

vaccine; we are pro safe vaccine and vaccine schedule. This fact

should not be so difficult for Karp to grasp; yet it is. Karp and

Tayloe are apparently fine with the fact that ether, aluminum,

ammonia and other toxic substances remain in vaccines as

preservatives. It is a sad day for the AAP to declare itself to be

against basic vaccine safety. Their claims of financial self-

sacrifice in their blind adherence to the world's most aggressive

infant vaccination schedule are grossly disingenuous. If they really

cared about vaccinating children against diseases they would make the

vaccines safe. If they want to learn about financial sacrifice they

can talk to the parents of an autistic child.

I was so proud of my parents, Bob and Suzanne , for doing the

impossible and having the United Nations declare World Autism Day.

The epidemic deserves this recognition and sense of urgency. While

most of the geneticists invited to speak about autism made ridiculous

claims about how autism is " 90% genetic " all the questions from the

audience were dismissive and angry about both this claim and the

endless amount of money poured into gene research while more

promising avenues of investigation are ignored. I was thrilled when

my Dad said yes, that Autism Speaks was sponsoring a vaccinated vs.

unvaccinated population study, in response to a mother's question.

Meanwhile Autism Speaks has sadly been ignoring all the exciting news

that the vast majority of parents deem important. There was no

mention of and having their history making debate with

the AAP and there is no mention of this weekend's DAN! Conference on

the website. I cringe when I hear AS leader's telling parents to look

to the website for help and information. Despite my pleas, AS science

and awareness leadership will not report on any biomedical news that

is not gene related. The genome receives endless coverage, on World

Autism Day, the only AS science news story was about how TV watching

causing autism, Offitt's op-ed pieces, NIH study about why the

GF/ CF diet is dangerous, everything single gene study from Cold

Springs Harbor but no coverage of the Dr. Polings' articles,

Kirby's or Deidre Imus' front page Huffington Post pieces about the

CDC, no coverage of Dr. Wakefield's response to his critics (although

the critics articles are always included in AS news) and NO mention

of the DAN! Conference.

If Autism Speaks only mission were awareness this would all be fine.

However, the walks collect tremendous amounts of money for research

and services. When I was a kid I was told over and over again, if you

are going to do something, do it right. If you say you are a big tent

and that you welcome and respect the concerns of the parental

community get your scientific leadership to show up at a DAN!

Conference. This has yet to happen in four years. I am not talking

about setting up a AGRE table, I mean scientists attending the

workshops and listening to parents. Somehow they find the time to

attend and sponsor dozens of international eye- gazing and brain

imaging workshops, but cannot find the time for DAN! I wonder why…

I have been unsuccessful in convincing this group why biomedical

research and the biomedical community are important. Maybe parents

reading this can let AS scientific leadership know how you feel about

this. I would interpret a non-response as disinterest in our

community.

Mroithmayr@... Mark is the AS president

Goldstein@... Dr. Goldstein is a scientific director

Ashih@... Andy is a scientific director

Asinger@... Alison Singer is in charge of website content

has two young boys. Her oldest son, Christian, is

severely affected by autism. He developed normally; smiling, talking,

walking; only to lose every skill and every word by the age of 2 and

a half. Upon the advice of medical professionals and her

husband were advised to pursue only high quality behavioral therapy,

speech and OT for Christian. It had no meaningful impact on Christian

until his parents sought help from DAN! doctors who treated the

underlying causes of Christian's descent into autism. Christian has

improved but still has far to go. He has Inflammatory Bowel Disease,

the measles virus in his gut and an immune system akin to a late

stage AIDS patient. Christian does not have a psychiatric disorder.

Before autism, was the Clinical Director of Sexual

Assault Crisis Center in Stamford Connecticut. is proud to

serve on the Boards of NAA and SafeMinds.