on AS research

[Guest guest]

Autism Speaks' Funding Priorities Questioned

is the daughter of Bob and Suzanna

, founders of the mega foundation Autism Speaks.

's son Christian is the child whose autism

diagnosis launched the creation of the foundation.

About a year ago, and her parents disagreed

publically over the probably causes of autism and

about priorities in research and funding. This week,

spoke out again - this time on Dan Olmsted's Age

of Autism E-magazine.

In her fairly long article, attempts to

disconnect the " creative team, the administrative

staff, the incredibly hard working special event and

Walk staffers " of Autism Speaks from its scientific

advisors. In essence, she says that those in charge

(including her parents) are terrific people - but

those involved with funding decisions... aren't:

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 adequately 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.

After reading 's piece, I decided it was about

time I really dug into Autism Speaks' actual mission.

After all, if their stated intention is to research

causes of autism - period - then she has nothing to

complain about. But - distressingly - here are their

stated goals:

We are dedicated to funding global biomedical research

into the causes, prevention, treatments, and cure for

autism; to raising public awareness about autism and

its effects on individuals, families, and society; and

to bringing hope to all who deal with the hardships of

this disorder. We are committed to raising the funds

necessary to support these goals.

Autism Speaks aims to bring the autism community

together as one strong voice to urge the government

and private sector to listen to our concerns and take

action to address this urgent global health crisis. It

is our firm belief that, working together, we will

find the missing pieces of the puzzle.

Oh, dear.

It seems that Autism Speaks really does intend to

provide a voice for the unheard. To explore

" biomedical " treatments. To " bring hope " to all. And

in these areas, it really does appear to be falling

short.

One of the biggest concerns about Autism Speaks is

that it rarely, if ever, solicits input from people

with autism. It's also true that Autism Speaks'

funding for actual hands-on treatment, support and

education of people with autism is a drop in the

bucket compared with funding for genetic and chemical

research. And while it's terrific to create " autism

awareness, " such efforts are hardly on a par with

actually serving the needs of people with autism.

If Autism Speaks really intends to draw together the

autism community, so that such a large and disparate

group can speak with one voice, it is doing so in a

top-down manner that excludes the vast majority of

people impacted by autism. And it's pretty tough to

blame scientific advisors for that.

In short, whatever one's views on vaccines and autism,

might just have a point. On the other hand, it's

pretty tough to separate - as does - the " good "

administrative leadership from the " not so good "

scientific leadership. After all, the scientists are

taking their direction from someone - and in the case

of Autism Speaks it's pretty clear that that direction

comes directly from the top.

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