On Autism Speaks' Grants

[Guest guest]

By

People frequently ask me what I think of Autism

Speaks and are surprised by my answer. I believe

the creative team, the administrative staff, the

incredibly hard working special event and Walk

staffers are amazing. They all could be pursuing

more lucrative careers elsewhere but truly want

to help autistic kids and their families.

My parents, Bob and Suzanne , are also

tireless in their efforts to bring attention to

the needs of our families. At a time when it

seems as if the whole world, especially in the

Middle East, is angry with the United States, my

Mom has successfully engaged in a wonderful

collaboration with the Sheika of Qatar in order

to have the United Nations declare a World Autism

Day. This is only the third time the U.N. has

recognized a disease in such a way. Autism Speaks

has, undoubtedly, lifted the shame and isolation

so many families felt by forcing autism into many

public forums in the media and government. Their

work on insurance re-imburs ement is also

extremely important to all our cash strapped

families.

It is Autism Speaks' scientific advisors that I

find myself at great pains to understand.

It appears as if they are wedded to the past and

are non-responsive to what parents want and the

immediate needs of our children. By any measure,

autism is worse than ever and traditional

research has yielded few breakthroughs for

children living today. So many ASD children are

living with horrible GI disease, seizures,

serious immune deficiencies, pain induced

self-abusive behavior…

Meanwhile AS has funded eye gazing research on

fruit flies, a study on the olfactory senses in

worms, endless gene research, yet nothing

relevant to the pain my child lives with on a

daily basis. Parents have waited for three years

in hopes of seeing real biomedical research. Of

course there is a place for gene and brain

research in autism, but not at the expense of

toxicology, immunology, regression,

gastrointestinal and vaccine safety research.

Preservatives in children's vaccines such as:

aluminum, ammonia, formaldehyde, mercury and

human embryos have never been adequate ly

researched or proven to be safe, nor has the

CDC's extremely aggressive vaccination schedule.

Everyday infants are injected with these

preservatives, combination vaccines and live

viruses. There is no more time to waste. We are

in the midst of a catastrophe and must be

unafraid in pursuit of answers.

It appears as if AS grants are selected less as a

result of the significance of a research proposal

but more as a consequence of the financial

resources of academic institutions to put forth

in producing most professional and conservative

grant applications. Instead of funding impactful,

breakthrough science, millions of dollars are

spent on researching the same safe subjects over

and over again. Numerous exciting, innovative and

progressive biomedical grants on GI disease,

methylation pathways and toxicity, vaccinated and

unvaccinated siblings have been repeatedly

rejected due to ignorance and fear. It is past

time for the scientific advisory boards to think

outside the box and pursue the bold research

parents want and our children desperately need.

Trump's recent comments are wonderfully

illustrative of how out of touch with reality the

AS' SAC is. Mr. Trump is the parent of a young

boy and is horrified by the recent explosion of

autism. Mr. Trump stated that he believes the

" massive " increase in vaccines for infants could

account for autism's rising numbers. Mrs. Melania

Trump has spoken openly about how she spaces out

Barron's vaccinations. So while some SAC

scientists still debate whether or not autism is

actually increasing, why it one in 90 American

boys in the spectrum does not equal an epidemic

and pursue their lonely quest to find the " autism

genes, " parents have moved on.

Regarding the most recent grants for young

investigators, I question the wisdom in investing

such great financial resources in researchers new

to the field while the grants of experienced DAN!

physicians who work to recover kids every day are

continually ignored. AS needs to invest in

doctors who have been treating and recovering so

many autistic children, not just in academics

with the best team of professional grant writers.

Hopefully, Autism Speaks' summertime clinical

grants will reflect a broader, more biomedical

and relevant approach to helping our children. In

the meantime, I encourage parents to educate

themselves about biomedical interventions via

other websites, such as: NAA, SafeMinds, ARI,

TACA, Generation Rescue, FAIR Media and

Thoughtful House.

I know that Autism Speaks is trying to change.

There are some truly courageous voices on the

SAC, but they are too few. I am, however,

optimistic that Dr. Baskin's new

environmental committee will green light some

exciting research. I am also hopeful that Dr.

Geraldine Dawson, AS' new Chief Scientific

Officer, will be more proactive than her

predecessor and champion the innovative

environmental research families want to see

funded.

On another subject I want to thank Deirdre Imus

for her wonderful essay in the Huffington Post

about the New Jersey vaccine mandate. I feel

heartbroken for the New Jersey parents who must

choose between day care, school and more vaccines

for their toddlers and school age children. Why

mercury has not been removed from every flu

vaccine simply defies comprehension. One would

think that New Jersey, possibly the autism

capital in the country, would approach vaccine

mandates with great caution. One in 60 New Jersey

boys is on the autist ic spectrum and the vast

majority of parents believe that vaccines played

a role in triggering the disorder in their

children.

It is astounding that the American Academy of

Pediatrics yet again, ignores parents' concerns

and testifies, again, in favor of the adding even

more vaccines to the overcrowded schedule.

Exemptions will be almost impossible to procure.

Parents with one ASD child are now placed in the

horrible position of having to over-vaccinate

younger siblings, despite their well-founded

concerns about the impact of so many live

viruses, dangerous preservatives and combination

vaccines on a developing brain.

It is time for the researchers, politicians and

the AAP to stop listening only to each other and

start listening to the families of autistic kids.

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 Stamfo rd Connecticut.

is proud to serve on the Boards of NAA and

SafeMinds.

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