Re: Autism Speaks: Friend or Foe?

June 28, 2007

Answer: foe.

>

> I'm reflecting on the question myself as I read these comments about

> AS. On the one hand, Suzanne is standing before the UN with a

> researcher at least affiliated with a Doctor we all respect deeply,

> Mady Hornig, and, to my surprise, they actually mention our unvax

> survey on their website.

Crumbs. All of a sudden we're not so easily made invisible.

>

> On the other hand, Fombonne, a " Doctor " many of us despise, is

> affiliated with Autism Speaks and he just spent the last 8 days

> being paid $400 an hour by the US Governemtn to testify against the

> Cedillo family.

Scratch Autism Speaks and you'll find NAAR, the CDC and Eli Lilly et al.

>

> When I met with the s last Fall, they said they wanted to

> have " everything under one tent " .

More like a bunker than a tent.

My number one issue with the

> s is that they, and the organization they founded, have simply

> not fulfilled this promise whatsoever.

And so, one might logically conclude that in the future they'll [fill

in the blank].

>

> None of us are looking for Autism Speaks to say " it's the vaccines,

> treat all the kids DAN! style and we can all go home " . What we are

> looking for is a seat at the table, both in terms of how they choose

> to publicly describe autism and how they spend dollars to maximize

> our chances of lowering prevalence and treating affected kids.

They can have their table. . .and their fur lined toilet seats, in my

humble opinion. I know a pharma front group when I sees one.

>

> Autism Speaks needs an " environmental wing " of their organization

> with a separate board to figure out how to spend the money. Take 25%

> of their budget, allocate it to this wing, stock it with the experts

> in our camp, and, boom, you have us all under one tent.

In our dreams. How much did AS chip in on your excellent vax/unvax

study? Was it heads or tails? How much did they advocate for vaccine

research in the CAA? Instead they helped railroad any mention of it

out of the language. The best we are ever going to get out of Autism

Speaks is in the person of , god bless her.

>

> For reasons beyond my comprehension, this isn't happening.

See my comment about pharma front group.

To the

> post earlier, they may not care what parents like us say on boards

> like this. But, they would care deeply if parents like you and me

> started to respectfully protest all of their star-studded events and

> sought to educate their attendees on our grievances and concerns. I

> hope parents will take it upon themselves to do just that, because I

> really know no ther way to let them know how deeply disappointed we

> are in their inability to build a tent large enough to accomodate us.

Let's focus on the positive and create our own fundraisers for

research and treatment. Let's put them to shame while making money at

it in competition. Yes?

> On another note, I genuinely believe that parents who believe their

> child's autism was caused by vaccines or other environmental insults

> represents not only a growing, but quite likely a majority of

> parents of autistic children. I'm sure that sentence will be on some

> cry-baby blogs soon enough, but I really wonder if Autism Speaks

> appreciates the scale of the constituency they have alienated.

I hope they find out the hard way.

Since

> the inner-circle of Autism Speaks are largely parents like

> London who look down their noses at us and believe autism is

> genetic, I doubt it.

Agree. Now you're talking!

> Civil disobedience has always been a hallmark of change in America,

> and I certainly feel its warrented to get Autism Speaks to expand

> the tent. They have had their chance to right the ship, and they

> simply haven't gotten it done. If Autism SPeaks were a company,

> they'd have filed BK a long time ago and brought in a new management

> team.

I believe the true purpose of Autism Speaks is to be a deflective

agent defending the interest of essentially the " respondents " at the

omnibus hearings - the malpracticing public health agencies and their

pharma kissing cousins who are responsible for the raging epidemics

that plague us.

Are you not convinced by now that the purpose of AS is NOT to find the

cause and cure for autism? AS is not the Goliath, however, just a

front group. Save your ammo for the real targets. And let's put our

energy into our own walks and fundraisers. I'm tired of whining and

waiting for Autism Speaks to become santa claus. Our kids deserve

better and we can do it.

Lenny

June 28, 2007

> Civil disobedience has always been a hallmark of change in America,

> and I certainly feel its warrented to get Autism Speaks to expand

> the tent. They have had their chance to right the ship, and they

> simply haven't gotten it done. If Autism SPeaks were a company,

> they'd have filed BK a long time ago and brought in a new

management

> team.

>

> JB

>

Three years ago I protested the Palm Beach County NAAR Walk. As I

walked back and forth carrying my " Shame on NAAR " sign on the

sidewalk outside the gathering, I listened as Mr. London told the

parents that they would help their children. After NAAR was absorbed

by AS and hearing the s tell how they were serious about

finding answers, I was filled with hope. So much so that I actually

participated in this years AS Walk. Boy was naive! Seems the s

and Londons are one in the same. Next year I'll carrying that sign

again.

This shit is getting old.

Charlie

June 28, 2007

Whenever I am out and about and see an autistic child with a family, I ask the parents what they believed the cause of their child's autism.

It is rare that the parents don't implicate the vaccines.

Autism Speaks: Friend or Foe?

I'm reflecting on the question myself as I read these comments about AS. On the one hand, Suzanne is standing before the UN with a researcher at least affiliated with a Doctor we all respect deeply, Mady Hornig, and, to my surprise, they actually mention our unvax survey on their website. On the other hand, Fombonne, a "Doctor" many of us despise, is affiliated with Autism Speaks and he just spent the last 8 days being paid $400 an hour by the US Governemtn to testify against the Cedillo family.When I met with the s last Fall, they said they wanted to have "everything under one tent". My number one issue with the s is that they, and the organization they founded, have simply not fulfilled this promise whatsoever. None of us are looking for Autism Speaks to say "it's the vaccines, treat all the kids DAN! style and we can all go home". What we are looking for is a seat at the table, both in terms of how they choose to publicly describe autism and how they spend dollars to maximize our chances of lowering prevalence and treating affected kids.Autism Speaks needs an "environmental wing" of their organization with a separate board to figure out how to spend the money. Take 25% of their budget, allocate it to this wing, stock it with the experts in our camp, and, boom, you have us all under one tent.For reasons beyond my comprehension, this isn't happening. To the post earlier, they may not care what parents like us say on boards like this. But, they would care deeply if parents like you and me started to respectfully protest all of their star-studded events and sought to educate their attendees on our grievances and concerns. I hope parents will take it upon themselves to do just that, because I really know no ther way to let them know how deeply disappointed we are in their inability to build a tent large enough to accomodate us.On another note, I genuinely believe that parents who believe their child's autism was caused by vaccines or other environmental insults represents not only a growing, but quite likely a majority of parents of autistic children. I'm sure that sentence will be on some cry-baby blogs soon enough, but I really wonder if Autism Speaks appreciates the scale of the constituency they have alienated. Since the inner-circle of Autism Speaks are largely parents like London who look down their noses at us and believe autism is genetic, I doubt it.Civil disobedience has always been a hallmark of change in America, and I certainly feel its warrented to get Autism Speaks to expand the tent. They have had their chance to right the ship, and they simply haven't gotten it done. If Autism SPeaks were a company, they'd have filed BK a long time ago and brought in a new management team.JB

June 28, 2007

I remember a few years back when NBC did the week long look into

autism and there was a mention of EOH on the show, etc.... I went to

the school that my son was going to for his " sensory integration

issues " and there were about 6 moms in the waiting area and the topic

of the program came up and each one of us implicated vaccinations to

a certain degree. Everyone agreed. There was no twisting of arms

and certainly no one was pushing anything on each other we were just

discussing it as a reality. I remember thinking... wow, I had no

idea that these other people thought the same thing as me... I

thought that I was one of a very tiny group of weirdos who thought

that vaccines could do such damage. It was eye-opening for me

because it was so well known to the people who really know their kids

and their kids development and no one seems (seemed) to really listen

to them... then and now.

Then there was the time that I walked into a local chiropractors to

listen to a speech he was giving on the dangers of vaccinations and

saw the ENTIRE staff of my son's school there commenting on how they

are very aware that vaccines are the root of many of the

developmental issues in the children that they see daily...

That was it for me... I couldn't believe (and still can't believe)

that we live in such a world of make-belive....

>

> Whenever I am out and about and see an autistic child with a

family, I ask the parents what they believed the cause of their

child's autism.

>

> It is rare that the parents don't implicate the vaccines.

>

> Autism Speaks: Friend or Foe?

>

> I'm reflecting on the question myself as I read these comments

about

> AS. On the one hand, Suzanne is standing before the UN

with a

> researcher at least affiliated with a Doctor we all respect

deeply,

> Mady Hornig, and, to my surprise, they actually mention our unvax

> survey on their website.

>

> On the other hand, Fombonne, a " Doctor " many of us despise,

is

> affiliated with Autism Speaks and he just spent the last 8 days

> being paid $400 an hour by the US Governemtn to testify against

the

> Cedillo family.

>

> When I met with the s last Fall, they said they wanted to

> have " everything under one tent " . My number one issue with the

> s is that they, and the organization they founded, have

simply

> not fulfilled this promise whatsoever.

>

> None of us are looking for Autism Speaks to say " it's the

vaccines,

> treat all the kids DAN! style and we can all go home " . What we

are

> looking for is a seat at the table, both in terms of how they

choose

> to publicly describe autism and how they spend dollars to

maximize

> our chances of lowering prevalence and treating affected kids.

>

> Autism Speaks needs an " environmental wing " of their organization

> with a separate board to figure out how to spend the money. Take

25%

> of their budget, allocate it to this wing, stock it with the

experts

> in our camp, and, boom, you have us all under one tent.

>

> For reasons beyond my comprehension, this isn't happening. To the

> post earlier, they may not care what parents like us say on

boards

> like this. But, they would care deeply if parents like you and me

> started to respectfully protest all of their star-studded events

and

> sought to educate their attendees on our grievances and concerns.

I

> hope parents will take it upon themselves to do just that,

because I

> really know no ther way to let them know how deeply disappointed

we

> are in their inability to build a tent large enough to accomodate

us.

>

> On another note, I genuinely believe that parents who believe

their

> child's autism was caused by vaccines or other environmental

insults

> represents not only a growing, but quite likely a majority of

> parents of autistic children. I'm sure that sentence will be on

some

> cry-baby blogs soon enough, but I really wonder if Autism Speaks

> appreciates the scale of the constituency they have alienated.

Since

> the inner-circle of Autism Speaks are largely parents like

> London who look down their noses at us and believe autism is

> genetic, I doubt it.

>

> Civil disobedience has always been a hallmark of change in

America,

> and I certainly feel its warrented to get Autism Speaks to expand

> the tent. They have had their chance to right the ship, and they

> simply haven't gotten it done. If Autism SPeaks were a company,

> they'd have filed BK a long time ago and brought in a new

management

> team.

>

> JB

>

June 28, 2007

Lenny - I like your words they bare repeating. AS isn't in it for

autism.

In EOHarm , " schaferatsprynet " <schafer@...> wrote:

>

> Answer: foe.

>

> >

> > I'm reflecting on the question myself as I read these comments

about

> > AS. On the one hand, Suzanne is standing before the UN

with a

> > researcher at least affiliated with a Doctor we all respect

deeply,

> > Mady Hornig, and, to my surprise, they actually mention our unvax

> > survey on their website.

>

> Crumbs. All of a sudden we're not so easily made invisible.

>

> >

> > On the other hand, Fombonne, a " Doctor " many of us despise,

is

> > affiliated with Autism Speaks and he just spent the last 8 days

> > being paid $400 an hour by the US Governemtn to testify against

the

> > Cedillo family.

>

> Scratch Autism Speaks and you'll find NAAR, the CDC and Eli Lilly

et al.

>

> >

> > When I met with the s last Fall, they said they wanted to

> > have " everything under one tent " .

>

> More like a bunker than a tent.

>

> My number one issue with the

> > s is that they, and the organization they founded, have

simply

> > not fulfilled this promise whatsoever.

>

> And so, one might logically conclude that in the future they'll

[fill

> in the blank].

>

> >

> > None of us are looking for Autism Speaks to say " it's the

vaccines,

> > treat all the kids DAN! style and we can all go home " . What we

are

> > looking for is a seat at the table, both in terms of how they

choose

> > to publicly describe autism and how they spend dollars to

maximize

> > our chances of lowering prevalence and treating affected kids.

>

> They can have their table. . .and their fur lined toilet seats, in

my

> humble opinion. I know a pharma front group when I sees one.

>

> >

> > Autism Speaks needs an " environmental wing " of their organization

> > with a separate board to figure out how to spend the money. Take

25%

> > of their budget, allocate it to this wing, stock it with the

experts

> > in our camp, and, boom, you have us all under one tent.

>

> In our dreams. How much did AS chip in on your excellent vax/unvax

> study? Was it heads or tails? How much did they advocate for

vaccine

> research in the CAA? Instead they helped railroad any mention of it

> out of the language. The best we are ever going to get out of Autism

> Speaks is in the person of , god bless her.

>

> >

> > For reasons beyond my comprehension, this isn't happening.

>

> See my comment about pharma front group.

>

> To the

> > post earlier, they may not care what parents like us say on

boards

> > like this. But, they would care deeply if parents like you and me

> > started to respectfully protest all of their star-studded events

and

> > sought to educate their attendees on our grievances and concerns.

I

> > hope parents will take it upon themselves to do just that,

because I

> > really know no ther way to let them know how deeply disappointed

we

> > are in their inability to build a tent large enough to accomodate

us.

>

> Let's focus on the positive and create our own fundraisers for

> research and treatment. Let's put them to shame while making money

at

> it in competition. Yes?

>

> > On another note, I genuinely believe that parents who believe

their

> > child's autism was caused by vaccines or other environmental

insults

> > represents not only a growing, but quite likely a majority of

> > parents of autistic children. I'm sure that sentence will be on

some

> > cry-baby blogs soon enough, but I really wonder if Autism Speaks

> > appreciates the scale of the constituency they have alienated.

>

> I hope they find out the hard way.

>

> Since

> > the inner-circle of Autism Speaks are largely parents like

> > London who look down their noses at us and believe autism is

> > genetic, I doubt it.

>

> Agree. Now you're talking!

>

> > Civil disobedience has always been a hallmark of change in

America,

> > and I certainly feel its warrented to get Autism Speaks to expand

> > the tent. They have had their chance to right the ship, and they

> > simply haven't gotten it done. If Autism SPeaks were a company,

> > they'd have filed BK a long time ago and brought in a new

management

> > team.

>

> I believe the true purpose of Autism Speaks is to be a deflective

> agent defending the interest of essentially the " respondents " at the

> omnibus hearings - the malpracticing public health agencies and

their

> pharma kissing cousins who are responsible for the raging epidemics

> that plague us.

>

> Are you not convinced by now that the purpose of AS is NOT to find

the

> cause and cure for autism? AS is not the Goliath, however, just a

> front group. Save your ammo for the real targets. And let's put our

> energy into our own walks and fundraisers. I'm tired of whining and

> waiting for Autism Speaks to become santa claus. Our kids deserve

> better and we can do it.

>

> Lenny

>

June 29, 2007

Thoughtful post.

I have a different view. I also have a deep respect for yours JB.

My view is the it is game set match for AS.

The fire has hardened them.

AS will not change

We change.

Autism Speaks is clearly in the hands of academic researchers that

have found soft money from the incredible publicity of the problem

with autism in this country.

The s are not in control.

It didn't start out this way - but the mechanisms are locked in for

methods of raising money - reviewing proposals (many of them given to

the reviewers institutions) and paying staff very well to continue the

policies.

obviously understands much more than she is willing to say.

Remember that she reported that her parents felt the same way about

many of the same issues. Anyone talking to her will confirm this.

Imagine the power of the " institution " to prepare a statement for the

parents of to sign (The s) denouncing her and in effect

calling her a liar. It is a 36 year old blood relationship. My god!

The mother did add the line about loving her. Love was forgotten by

the institution.

Imagine the influence over the 's to prepare the media story

that made sound like an idiot. Shocking! Painful Tragic

So... does this make sense now - this is not a front for the

pharmaceuticals - it is not a government conspiracy - it is a feeding

frenzy over increasing amounts of money and access to power.

So... what do you think AS will do with your letters. Share?

These are the same people that will not share the money for treating

your children and providing services.

What to do?

The answers are coming --------------

You can see it on the horizon

You can feel it

It is not AS changing - it is us that are changing

We are at a time in history of autism that your voices will be heard

Look for those with vision - strength and hope.

Follow those with plans of action.

Vision is driven by faith not fear or anger.