Re: PA rally.... I can't shut up anymore

[Guest guest]

mercerdad13,

" IMO " should speak even louder. So I respectfully disagree with

your comments.

,

We are behind you, , so keep on doing what you are doing.We will

join with you. Thanks.

Bob

Father of a 7 year old - who cannot speak - who is glad that there are

parents like Waeltermann who speak out.

On Jun 24, 2007, at 12:34 PM, Marie Ventura wrote:

The tone of your comment is so offensive - did you really intend to be

that offensive to an autism Mom, who is clearly fighting for other

parents & children with autism?? Maybe before hitting the 'send' button

next time, you can read what you wrote, and think about how you'd like

to be the receiver of the message.

 

Are you the parent of a child with autism? Because I am - the mom of

two kids on the autism spectrum, and I don't appreciate your personal

attack on someone who is very actively trying to help others. JMHO.

 

Marie

mercerdad13 <wmpenn200@...> wrote:

> Actually, it would be nice if you did shut up. Why focus so much of

> your energy on hating someone in the autism community so much? Maybe

> you are better off helping local kids in your area, maybe even your

> own kids. You seemed burned out, . Time to move on. (IMO)

>

>

> >

> > I don't think I've ever hated another group as much as I hate Autism

> > Speaks.

> >

> > For four years a handful of advocates in PA were responsible for

> > finding, writing, pushing forth, finding sponsors, and advocating

> for

> > insurance legislation so insurance companies are forced to stop

> > discriminating against kids with autism.

> >

> > In comes Autism Speaks. They woo Speaker of the House Dennis

> O'Brien

> > (who has always been our champion -- he is a passionate man about

> > autism because his nephew is very severely affected). Last year, we

> > got the bill passed unanimously through the House, but a few members

> > of the Senate (mostly in the pockets of insurance companies) stopped

> > the bill and quashed it at the 11th hour. We were crushed.

> >

> > So this year, we reintroduce the bill. Dennis O'Brien leaves out

> > every advocate who had helped him up to the point -- Autism Speaks

> > comes in with their hollywood actor from the " Sopranos " (holy irony

> > there, eh?), and introduce the " new " bill that " they " put forth amid

> > much fanfare, pomp and circumstance.

> >

> > Well, now the push has to come for the bill because it's back in the

> > Senate again being quashed by the same idiots who have insurance

> > companies in their pocket.

> >

> > The president of the ASA in burg, PA makes a reservation for

> the

> > Rotunda to have a rally. Who comes in? You guessed it. Autism

> > Speaks. I'm here trying to rally people to get on a bus, to come to

> > burg, to support the bill, etc. etc. I'm making posters and

> > flyers and phonecalls, etc. I was assured that Autism Speaks was

> > merely there to pay for the busses and what not.

> >

> > Next thing I know, on their website, they're touting " THEIR " bill in

> > Pennsylvania!!!!!!!! I am so ready to explode, I think my veins are

> > standing out on end in my neck.

> >

> > I only had 7 people interested in coming, 3 of whom backed out when

> > they heard autism speaks had something to do with it. I was going

> to

> > go to the rally anyway because I had these lovely AUTISM SPEAKS DOES

> > NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going. In

> fact,

> > nobody that I know in the Pittsburgh area is getting on the bus. (I

> > had nothing to do with that.)

> >

> > They're having trouble recruiting participants.

> >

> > Hrm. Do you think it has to do with their GUERRILLA SCORCHED EARTH

> > TACTICS? Let's just burn everything else down so we're the only one

> > left standing, either that or buy them off, and then we're the only

> > game in town. (CAN jumped at their money like a shark at a bucket

> of

> > chum.)

> >

> > Although I've fought for this for many years, I don't think I'm

> going

> > to go. (I'm not 100% sure yet because I'm so torn.)

> >

> > I'm going to concentrate on helping the kids that we help at the

> local

> > level. The only thing that makes me happy about the autism

> community

> > -- watching a kid make progress. Having him come to say " pretzel "

> to

> > miss cindy after not being able to verbalize all of his life.

> >

> > I cannot take this political crap anymore. I'm so weary, frustrated,

> > and beaten down. But you know that will last about 3 days and then

> > I'll be back after them with a vengeance.

> >

> >

> >

>

Moody friends. Drama queens. Your life? Nope! - their life, your story.

Play Sims Stories at Games.

[Guest guest]

" Actually, it would be nice if you did shut up " .

Why would that be " nice " ?

Nice is way over-rated. I prefer when people have morals and a

backbone to speak their mind. Apparently, you prefer sheep....

> >

> > I don't think I've ever hated another group as much as I hate

Autism

> > Speaks.

> >

> > For four years a handful of advocates in PA were responsible for

> > finding, writing, pushing forth, finding sponsors, and

advocating

> for

> > insurance legislation so insurance companies are forced to stop

> > discriminating against kids with autism.

> >

> > In comes Autism Speaks. They woo Speaker of the House Dennis

> O'Brien

> > (who has always been our champion -- he is a passionate man about

> > autism because his nephew is very severely affected). Last

year, we

> > got the bill passed unanimously through the House, but a few

members

> > of the Senate (mostly in the pockets of insurance companies)

stopped

> > the bill and quashed it at the 11th hour. We were crushed.

> >

> > So this year, we reintroduce the bill. Dennis O'Brien leaves out

> > every advocate who had helped him up to the point -- Autism

Speaks

> > comes in with their hollywood actor from the " Sopranos " (holy

irony

> > there, eh?), and introduce the " new " bill that " they " put forth

amid

> > much fanfare, pomp and circumstance.

> >

> > Well, now the push has to come for the bill because it's back in

the

> > Senate again being quashed by the same idiots who have insurance

> > companies in their pocket.

> >

> > The president of the ASA in burg, PA makes a reservation

for

> the

> > Rotunda to have a rally. Who comes in? You guessed it. Autism

> > Speaks. I'm here trying to rally people to get on a bus, to

come to

> > burg, to support the bill, etc. etc. I'm making posters

and

> > flyers and phonecalls, etc. I was assured that Autism Speaks was

> > merely there to pay for the busses and what not.

> >

> > Next thing I know, on their website, they're touting " THEIR "

bill in

> > Pennsylvania!!!!!!!! I am so ready to explode, I think my veins

are

> > standing out on end in my neck.

> >

> > I only had 7 people interested in coming, 3 of whom backed out

when

> > they heard autism speaks had something to do with it. I was

going

> to

> > go to the rally anyway because I had these lovely AUTISM SPEAKS

DOES

> > NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going. In

> fact,

> > nobody that I know in the Pittsburgh area is getting on the

bus. (I

> > had nothing to do with that.)

> >

> > They're having trouble recruiting participants.

> >

> > Hrm. Do you think it has to do with their GUERRILLA SCORCHED

EARTH

> > TACTICS? Let's just burn everything else down so we're the only

one

> > left standing, either that or buy them off, and then we're the

only

> > game in town. (CAN jumped at their money like a shark at a

bucket

> of

> > chum.)

> >

> > Although I've fought for this for many years, I don't think I'm

> going

> > to go. (I'm not 100% sure yet because I'm so torn.)

> >

> > I'm going to concentrate on helping the kids that we help at the

> local

> > level. The only thing that makes me happy about the autism

> community

> > -- watching a kid make progress. Having him come to

say " pretzel "

> to

> > miss cindy after not being able to verbalize all of his life.

> >

> > I cannot take this political crap anymore. I'm so weary,

frustrated,

> > and beaten down. But you know that will last about 3 days and

then

> > I'll be back after them with a vengeance.

> >

> >

> >

>

[Guest guest]

I don't know the answer either, which is why I asked the question. The

preface to my question was meant simply to acknowledge my respect for

the credentials and experience of the 3 persons mentioned, irrespective

of whether they have affected children.

On Jun 24, 2007, at 8:42 AM, elevatordance wrote:

Then I interpreted your question incorrectly, sorry.  I don't know the

answer to your newly clarified question. 

Heidi

> From:   Krakow <rkrakow@...>

> Reply-To:  EOHarm

> To:  EOHarm

> Subject:  Re: Re: PA rally.... I can't shut up anymore

> Date:  Sat, 23 Jun 2007 23:54:28 -0400

> >Thanks for pointing that out to me. I did not, however, suggest

> >otherwise in my message. I have gotten two responses to my question,

> >neither of which have answered my question, which is a

> >straightforward one. I simply wanted to know whether or not any of

> >the 3 are parents of an affected child.  My question contains no

> >opinion as to whether any of these people are or will be

> effective,

[Guest guest]

I hate to tell you this, but your nasty little post seems to have

backfired. I'm getting lots of support from some nice people.

So truly, thanks for posting the insult. It did wonders for uplifting me.

> >

> > I don't think I've ever hated another group as much as I hate Autism

> > Speaks.

> >

> > For four years a handful of advocates in PA were responsible for

> > finding, writing, pushing forth, finding sponsors, and advocating

> for

> > insurance legislation so insurance companies are forced to stop

> > discriminating against kids with autism.

> >

> > In comes Autism Speaks. They woo Speaker of the House Dennis

> O'Brien

> > (who has always been our champion -- he is a passionate man about

> > autism because his nephew is very severely affected). Last year, we

> > got the bill passed unanimously through the House, but a few members

> > of the Senate (mostly in the pockets of insurance companies) stopped

> > the bill and quashed it at the 11th hour. We were crushed.

> >

> > So this year, we reintroduce the bill. Dennis O'Brien leaves out

> > every advocate who had helped him up to the point -- Autism Speaks

> > comes in with their hollywood actor from the " Sopranos " (holy irony

> > there, eh?), and introduce the " new " bill that " they " put forth amid

> > much fanfare, pomp and circumstance.

> >

> > Well, now the push has to come for the bill because it's back in the

> > Senate again being quashed by the same idiots who have insurance

> > companies in their pocket.

> >

> > The president of the ASA in burg, PA makes a reservation for

> the

> > Rotunda to have a rally. Who comes in? You guessed it. Autism

> > Speaks. I'm here trying to rally people to get on a bus, to come to

> > burg, to support the bill, etc. etc. I'm making posters and

> > flyers and phonecalls, etc. I was assured that Autism Speaks was

> > merely there to pay for the busses and what not.

> >

> > Next thing I know, on their website, they're touting " THEIR " bill in

> > Pennsylvania!!!!!!!! I am so ready to explode, I think my veins are

> > standing out on end in my neck.

> >

> > I only had 7 people interested in coming, 3 of whom backed out when

> > they heard autism speaks had something to do with it. I was going

> to

> > go to the rally anyway because I had these lovely AUTISM SPEAKS DOES

> > NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going. In

> fact,

> > nobody that I know in the Pittsburgh area is getting on the bus. (I

> > had nothing to do with that.)

> >

> > They're having trouble recruiting participants.

> >

> > Hrm. Do you think it has to do with their GUERRILLA SCORCHED EARTH

> > TACTICS? Let's just burn everything else down so we're the only one

> > left standing, either that or buy them off, and then we're the only

> > game in town. (CAN jumped at their money like a shark at a bucket

> of

> > chum.)

> >

> > Although I've fought for this for many years, I don't think I'm

> going

> > to go. (I'm not 100% sure yet because I'm so torn.)

> >

> > I'm going to concentrate on helping the kids that we help at the

> local

> > level. The only thing that makes me happy about the autism

> community

> > -- watching a kid make progress. Having him come to say " pretzel "

> to

> > miss cindy after not being able to verbalize all of his life.

> >

> > I cannot take this political crap anymore. I'm so weary, frustrated,

> > and beaten down. But you know that will last about 3 days and then

> > I'll be back after them with a vengeance.

> >

> >

> >

>

[Guest guest]

Hey , maybe you want to mind your own business. From what I've

read, it seems to me is quite capable of standing up for

herself.

> > >

> > > I don't think I've ever hated another group as much as I hate

> Autism

> > > Speaks.

> > >

> > > For four years a handful of advocates in PA were responsible

for

> > > finding, writing, pushing forth, finding sponsors, and

> advocating

> > for

> > > insurance legislation so insurance companies are forced to stop

> > > discriminating against kids with autism.

> > >

> > > In comes Autism Speaks. They woo Speaker of the House Dennis

> > O'Brien

> > > (who has always been our champion -- he is a passionate man

about

> > > autism because his nephew is very severely affected). Last

> year, we

> > > got the bill passed unanimously through the House, but a few

> members

> > > of the Senate (mostly in the pockets of insurance companies)

> stopped

> > > the bill and quashed it at the 11th hour. We were crushed.

> > >

> > > So this year, we reintroduce the bill. Dennis O'Brien leaves

out

> > > every advocate who had helped him up to the point -- Autism

> Speaks

> > > comes in with their hollywood actor from the " Sopranos " (holy

> irony

> > > there, eh?), and introduce the " new " bill that " they " put

forth

> amid

> > > much fanfare, pomp and circumstance.

> > >

> > > Well, now the push has to come for the bill because it's back

in

> the

> > > Senate again being quashed by the same idiots who have

insurance

> > > companies in their pocket.

> > >

> > > The president of the ASA in burg, PA makes a reservation

> for

> > the

> > > Rotunda to have a rally. Who comes in? You guessed it.

Autism

> > > Speaks. I'm here trying to rally people to get on a bus, to

> come to

> > > burg, to support the bill, etc. etc. I'm making posters

> and

> > > flyers and phonecalls, etc. I was assured that Autism Speaks

was

> > > merely there to pay for the busses and what not.

> > >

> > > Next thing I know, on their website, they're touting " THEIR "

> bill in

> > > Pennsylvania!!!!!!!! I am so ready to explode, I think my

veins

> are

> > > standing out on end in my neck.

> > >

> > > I only had 7 people interested in coming, 3 of whom backed out

> when

> > > they heard autism speaks had something to do with it. I was

> going

> > to

> > > go to the rally anyway because I had these lovely AUTISM

SPEAKS

> DOES

> > > NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> > > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going.

In

> > fact,

> > > nobody that I know in the Pittsburgh area is getting on the

> bus. (I

> > > had nothing to do with that.)

> > >

> > > They're having trouble recruiting participants.

> > >

> > > Hrm. Do you think it has to do with their GUERRILLA SCORCHED

> EARTH

> > > TACTICS? Let's just burn everything else down so we're the

only

> one

> > > left standing, either that or buy them off, and then we're the

> only

> > > game in town. (CAN jumped at their money like a shark at a

> bucket

> > of

> > > chum.)

> > >

> > > Although I've fought for this for many years, I don't think

I'm

> > going

> > > to go. (I'm not 100% sure yet because I'm so torn.)

> > >

> > > I'm going to concentrate on helping the kids that we help at

the

> > local

> > > level. The only thing that makes me happy about the autism

> > community

> > > -- watching a kid make progress. Having him come to

> say " pretzel "

> > to

> > > miss cindy after not being able to verbalize all of his life.

> > >

> > > I cannot take this political crap anymore. I'm so weary,

> frustrated,

> > > and beaten down. But you know that will last about 3 days

and

> then

> > > I'll be back after them with a vengeance.

> > >

> > >

> > >

> >

>

[Guest guest]

I think your right Lenny. The weakness of the structure was probably its

strength all these

years.

The autonomy and independence of the chapters has created a very tough structure

to be

a funding group for a national organization. Almost all the money collected at

ASA

chapters locally stays locally. Actually the local and national ASA money is 2-3

times what

AS raises.

Autism Speaks is planning to have chapters but these chapters will be " corporate

chapters "

that are primarily organized to raise money for Autism Speaks and organize local

funding

activities. Since almost all the AS money would go to academic research groups -

this

would not be supported by local ASA chapters.

That is at least what I understand. This is probably the reason why AS has never

shown

any interest in ASA and its 120,000 members in 170 chapters.

What is happening is that the national ASA board has decided that it is critical

to have a

national plan that will significantly improve the lives of families with autism.

ASA has no

interest in merging into any other group.

I feel the democratically elected Board gives ASA the best chance to change with

the

times. It is a bit of chicken and egg -- the stronger ASA gets in terms of

" good work " the

more parents will support the organization and the more the organization will

reflect the

will of those involved parents.

Bottom line - ASA has to continue to earn respect by doing good work and

respecting the

work of so many parents that are fighting to find effective treatment.

ASA has made great progress toward this goal. The second half of this year will

be a time

of significant change.

Humphrey

> > > > >

> > > > > Autism Speaks continues to make friends all around. <Insert

> > > sarcastic tone>

> > > > >

> > > > >

> > > > >

> > > > > Pamela

> > > > >

> > > > > " Courage is doing what you're afraid to do. There can be no

> > > courage unless

> > > > > you're scared. "

> > > > >

> > > > > Eddie Rickenbacker, top US fighter ace, WWI

> > > > >

> > > > >

> > > > >

> > > > > _____

> > > > >

> > > > > From: EOHarm [mailto:EOHarm ] On

> > > Behalf Of

> > > > > autismlink

> > > > > Sent: Saturday, June 23, 2007 10:15 AM

> > > > > EOHarm

> > > > > Subject: PA rally.... I can't shut up anymore

> > > > >

> > > > >

> > > > >

> > > > > I don't think I've ever hated another group as much as I hate

> > Autism

> > > > > Speaks.

> > > > >

> > > > > For four years a handful of advocates in PA were responsible

> > for

> > > > > finding, writing, pushing forth, finding sponsors, and

> > advocating for

> > > > > insurance legislation so insurance companies are forced to stop

> > > > > discriminating against kids with autism.

> > > > >

> > > > > In comes Autism Speaks. They woo Speaker of the House Dennis

> > O'Brien

> > > > > (who has always been our champion -- he is a passionate man

> > about

> > > > > autism because his nephew is very severely affected). Last

> > year, we

> > > > > got the bill passed unanimously through the House, but a few

> > members

> > > > > of the Senate (mostly in the pockets of insurance companies)

> > stopped

> > > > > the bill and quashed it at the 11th hour. We were crushed.

> > > > >

> > > > > So this year, we reintroduce the bill. Dennis O'Brien leaves

> > out

> > > > > every advocate who had helped him up to the point -- Autism

> > Speaks

> > > > > comes in with their hollywood actor from the " Sopranos " (holy

> > irony

> > > > > there, eh?), and introduce the " new " bill that " they " put

> > forth amid

> > > > > much fanfare, pomp and circumstance.

> > > > >

> > > > > Well, now the push has to come for the bill because it's back

> > in the

> > > > > Senate again being quashed by the same idiots who have

> > insurance

> > > > > companies in their pocket.

> > > > >

> > > > > The president of the ASA in burg, PA makes a reservation

> > for the

> > > > > Rotunda to have a rally. Who comes in? You guessed it. Autism

> > > > > Speaks. I'm here trying to rally people to get on a bus, to

> > come to

> > > > > burg, to support the bill, etc. etc. I'm making posters

> > and

> > > > > flyers and phonecalls, etc. I was assured that Autism Speaks

> > was

> > > > > merely there to pay for the busses and what not.

> > > > >

> > > > > Next thing I know, on their website, they're touting " THEIR "

> > bill in

> > > > > Pennsylvania!!!!!!!! I am so ready to explode, I think my

> > veins are

> > > > > standing out on end in my neck.

> > > > >

> > > > > I only had 7 people interested in coming, 3 of whom backed out

> > when

> > > > > they heard autism speaks had something to do with it. I was

> > going to

> > > > > go to the rally anyway because I had these lovely AUTISM

> > SPEAKS DOES

> > > > > NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> > > > > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going.

> > In fact,

> > > > > nobody that I know in the Pittsburgh area is getting on the

> > bus. (I

> > > > > had nothing to do with that.)

> > > > >

> > > > > They're having trouble recruiting participants.

> > > > >

> > > > > Hrm. Do you think it has to do with their GUERRILLA SCORCHED

> > EARTH

> > > > > TACTICS? Let's just burn everything else down so we're the

> > only one

> > > > > left standing, either that or buy them off, and then we're the

> > only

> > > > > game in town. (CAN jumped at their money like a shark at a

> > bucket of

> > > > > chum.)

> > > > >

> > > > > Although I've fought for this for many years, I don't think

> > I'm going

> > > > > to go. (I'm not 100% sure yet because I'm so torn.)

> > > > >

> > > > > I'm going to concentrate on helping the kids that we help at

> > the local

> > > > > level. The only thing that makes me happy about the autism

> > community

> > > > > -- watching a kid make progress. Having him come to

> > say " pretzel " to

> > > > > miss cindy after not being able to verbalize all of his life.

> > > > >

> > > > > I cannot take this political crap anymore. I'm so weary,

> > frustrated,

> > > > > and beaten down. But you know that will last about 3 days and

> > then

> > > > > I'll be back after them with a vengeance.

> > > > >

> > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

- you're not the only one who has noticed. At the bill's re-

introduction both s and their celebrity friend were present.

I did notice O'Brien wearing the AS pin all the time now. I'm sure

he hasn't read the Evidence of Harm book given to him at the

Lancaster event months ago.

I was torn too, perhaps they can channel their money into getting

legislation passed in states and stay away from the research stuff

(which would just be pi**ing it away anyways).

Now I have to be at work anyways since a colleague is on vacation.

Diane

>

> I don't think I've ever hated another group as much as I hate

Autism

> Speaks.

>

> For four years a handful of advocates in PA were responsible for

> finding, writing, pushing forth, finding sponsors, and advocating

for

> insurance legislation so insurance companies are forced to stop

> discriminating against kids with autism.

>

> In comes Autism Speaks. They woo Speaker of the House Dennis

O'Brien

> (who has always been our champion -- he is a passionate man about

> autism because his nephew is very severely affected). Last year,

we

> got the bill passed unanimously through the House, but a few

members

> of the Senate (mostly in the pockets of insurance companies)

stopped

> the bill and quashed it at the 11th hour. We were crushed.

>

> So this year, we reintroduce the bill. Dennis O'Brien leaves out

> every advocate who had helped him up to the point -- Autism Speaks

> comes in with their hollywood actor from the " Sopranos " (holy irony

> there, eh?), and introduce the " new " bill that " they " put forth

amid

> much fanfare, pomp and circumstance.

>

> Well, now the push has to come for the bill because it's back in

the

> Senate again being quashed by the same idiots who have insurance

> companies in their pocket.

>

> The president of the ASA in burg, PA makes a reservation for

the

> Rotunda to have a rally. Who comes in? You guessed it. Autism

> Speaks. I'm here trying to rally people to get on a bus, to come

to

> burg, to support the bill, etc. etc. I'm making posters and

> flyers and phonecalls, etc. I was assured that Autism Speaks was

> merely there to pay for the busses and what not.

>

> Next thing I know, on their website, they're touting " THEIR " bill

in

> Pennsylvania!!!!!!!! I am so ready to explode, I think my veins

are

> standing out on end in my neck.

>

> I only had 7 people interested in coming, 3 of whom backed out when

> they heard autism speaks had something to do with it. I was going

to

> go to the rally anyway because I had these lovely AUTISM SPEAKS

DOES

> NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going. In

fact,

> nobody that I know in the Pittsburgh area is getting on the bus.

(I

> had nothing to do with that.)

>

> They're having trouble recruiting participants.

>

> Hrm. Do you think it has to do with their GUERRILLA SCORCHED EARTH

> TACTICS? Let's just burn everything else down so we're the only

one

> left standing, either that or buy them off, and then we're the only

> game in town. (CAN jumped at their money like a shark at a bucket

of

> chum.)

>

> Although I've fought for this for many years, I don't think I'm

going

> to go. (I'm not 100% sure yet because I'm so torn.)

>

> I'm going to concentrate on helping the kids that we help at the

local

> level. The only thing that makes me happy about the autism

community

> -- watching a kid make progress. Having him come to say " pretzel "

to

> miss cindy after not being able to verbalize all of his life.

>

> I cannot take this political crap anymore. I'm so weary,

frustrated,

> and beaten down. But you know that will last about 3 days and

then

> I'll be back after them with a vengeance.

>

>

>

[Guest guest]

Who are you to say this to ? She has done so much for so many kids and families. She has every right to be angry at these bully tactics. AS is nothing but the Paris Hilton of the autism organizations. Hogging all the attention, greedily taking valuable resources others need so much and not doing a whole lot to benefit our community. While continues to offer her valuable assistance without the selfish attitude and tactics. We need far more than we need AS. And tell me what have YOU done for the autism community lately?

jmho,

Kathleen The world is not yet exhausted; let me see something tomorrow which I never saw before.- *************************************************************************

Re: PA rally.... I can't shut up anymore

Actually, it would be nice if you did shut up. Why focus so much of your energy on hating someone in the autism community so much? Maybe you are better off helping local kids in your area, maybe even your own kids. You seemed burned out, . Time to move on. (IMO)>> I don't think I've ever hated another group as much as I hate Autism> Speaks.> > For four years a handful of advocates in PA were responsible for> finding, writing, pushing forth, finding sponsors, and advocating for> insurance legislation so insurance companies are forced to stop> discriminating against kids with autism.> > In comes Autism Speaks. They woo Speaker of the House Dennis O'Brien> (who has always been our champion -- he is a passionate man about> autism because his nephew is

very severely affected). Last year, we> got the bill passed unanimously through the House, but a few members> of the Senate (mostly in the pockets of insurance companies) stopped> the bill and quashed it at the 11th hour. We were crushed.> > So this year, we reintroduce the bill. Dennis O'Brien leaves out> every advocate who had helped him up to the point -- Autism Speaks> comes in with their hollywood actor from the "Sopranos" (holy irony> there, eh?), and introduce the "new" bill that "they" put forth amid> much fanfare, pomp and circumstance.> > Well, now the push has to come for the bill because it's back in the> Senate again being quashed by the same idiots who have insurance> companies in their pocket.> > The president of the ASA in burg, PA makes a reservation for the> Rotunda to have a rally. Who comes

in? You guessed it. Autism> Speaks. I'm here trying to rally people to get on a bus, to come to> burg, to support the bill, etc. etc. I'm making posters and> flyers and phonecalls, etc. I was assured that Autism Speaks was> merely there to pay for the busses and what not.> > Next thing I know, on their website, they're touting "THEIR" bill in> Pennsylvania!!!!!!!! I am so ready to explode, I think my veins are> standing out on end in my neck.> > I only had 7 people interested in coming, 3 of whom backed out when> they heard autism speaks had something to do with it. I was going to> go to the rally anyway because I had these lovely AUTISM SPEAKS DOES> NOT SPEAK FOR ME tshirts made... and a 6' banner that says "IN> PENNSYLVANIA, AUTISMLINK SPEAKS"........ but I am not going. In

fact,> nobody that I know in the Pittsburgh area is getting on the bus. (I> had nothing to do with that.)> > They're having trouble recruiting participants.> > Hrm. Do you think it has to do with their GUERRILLA SCORCHED EARTH> TACTICS? Let's just burn everything else down so we're the only one> left standing, either that or buy them off, and then we're the only> game in town. (CAN jumped at their money like a shark at a bucket of> chum.) > > Although I've fought for this for many years, I don't think I'm going> to go. (I'm not 100% sure yet because I'm so torn.) > > I'm going to concentrate on helping the kids that we help at the local> level. The only thing that makes me happy about the autism community> -- watching a kid make

progress. Having him come to say "pretzel" to> miss cindy after not being able to verbalize all of his life.> > I cannot take this political crap anymore. I'm so weary, frustrated,> and beaten down. But you know that will last about 3 days and then> I'll be back after them with a vengeance.> > >

[Guest guest]

Dave, actually, the autonomy of the local

chapters was the only thing that saved ASA national from being burned to the

ground many years ago as it’s national leadership proved time and time

again to be a problem in our community. It’s painfully FEW chapters who

actually helped families and presented a variety of information were it’s

saving grace. It was the case against throwing the baby out with the bathwater

that saved National’s bacon. Chapters like NE

Illinois (eric) and a handful of others are to be credited with Nationals

survival.

AutismSpeaks will quickly learn that

without the support of the parents, they will have a hard time staying relevant.

It’s a lesson for the ASA National to pay attention to, since as a

National org, it’s done painfully little over the past 40 years. Shamefully,

disgustingly little. I believe it is a hopeful sign that you are on the board

now, as I have told you. J

Though I do wish you luck, as long as

people like Pratt are on the board, I won’t be holding my breath.

Holly

From: EOHarm [mailto:EOHarm ] On Behalf Of D Humphrey

Sent: Sunday, June 24, 2007 3:38

PM

EOHarm

Subject: Re: PA rally....

I can't shut up anymore

I think your right Lenny. The weakness of the

structure was probably its strength all these

years.

The autonomy and independence of the chapters has created a very tough

structure to be

a funding group for a national organization. Almost all the money collected at

ASA

chapters locally stays locally. Actually the local and national ASA money is

2-3 times what

AS raises.

Autism Speaks is planning to have chapters but these chapters will be

" corporate chapters "

that are primarily organized to raise money for Autism Speaks and organize

local funding

activities. Since almost all the AS money would go to academic research groups

- this

would not be supported by local ASA chapters.

That is at least what I understand. This is probably the reason why AS has

never shown

any interest in ASA and its 120,000 members in 170 chapters.

What is happening is that the national ASA board has decided that it is

critical to have a

national plan that will significantly improve the lives of families with

autism. ASA has no

interest in merging into any other group.

I feel the democratically elected Board gives ASA the best chance to change

with the

times. It is a bit of chicken and egg -- the stronger ASA gets in terms of

" good work " the

more parents will support the organization and the more the organization will

reflect the

will of those involved parents.

Bottom line - ASA has to continue to earn respect by doing good work and

respecting the

work of so many parents that are fighting to find effective treatment.

ASA has made great progress toward this goal. The second half of this year will

be a time

of significant change.

Humphrey

>

>

> That group was started when T. Shattuck was the president

> of the Autism Society of America

of Wisconsin.

Shattuck, you may

> recall, is the author of the study that tries to prove there is no

> autism epidemic. So, I would not be so surprized to hear they gave you

> the old heave ho for challenging the pro-pharma groupspeak.

>

> I think the individual autonomy of the local ASA chapters may it their

> saving grace, in the long run, however. It is probably why the Autism

> Borg Speaks has not targeted the ASA for assimilation.

>

> BTW, I didn't mean to leave out groups like A-CHAMP,

Autism United and

> others as providing an alternative voice to Autism Speaks.

>

> Lenny