RECOVERY STORY: PETE
ANGER, SADNESS AND THE TRUTH

AN OPEN LETTER TO AUTISM SPEAKS FROM SPEAKER O'BRIEN

July 12, 2008

Mr. Robert C. Wright
Co-Founder, Autism Speaks
2 Park Avenue
11th Floor
New York, NY 10016

Dear Bob:

We have a collective mission to create a world in which persons with autism have every opportunity to participate fully in society, to live meaningful and independent lives, to receive the respect they deserve and to have the supports necessary for them to reach the innate potential we know them to have. It's never been an easy mission, and it doesn't often permit us the luxury of a pause in the action to reflect on success.

I think last week's signing ceremony for Pennsylvania's Act 62 of 2008 compels us to pause, ever so briefly, to consider the statute and some of its history.

First, Act 62 is good, solid legislation that meets several critical goals for our community. We can all agree with that conclusion and, in many respects, it is the only conclusion that matters.

Second, people rarely accomplish important things without struggle, and Act 62 is no exception. When we first announced introduction of HB 1150 in our Capitol's rotunda 15 months ago, we understood that its passage was never assured and that the path would be replete with hurdles. It surely was. But we jumped the hurdles (and, when I refer to "we," I mean the broad coalition that included Pennsylvania families and advocacy groups, Pennsylvania's Public Welfare Secretary Estelle B. Richman, her staff, my staff, our allies in the Pennsylvania General Assembly and national advocacy groups like Autism Speaks).

Finally, and most painfully, "we" had some disagreements in the final days of this battle. It would serve no purpose to enumerate or detail those divergent positions here. However, while I had hoped that Governor Rendell's signature on Act 62 would end not only the legislative fight but also the internecine friction, that seems not to be the case.

In recent days, I have seen what appears to be an escalating war of words between and among members of Pennsylvania's advocacy community and the staff and volunteers of Autism Speaks. Most recently, Autism Speaks posted on its web site a revisionist account of the history of Act 62 with a comparison of versions of the bill that implicitly suggests that the amendments on which I insisted were immaterial. The posting is offensive, and I could readily point to its inaccuracies and misinterpretations. However, that is not the purpose of this letter. Bob, our collective mission is in no sense complete. We have many more goals to meet, and our efforts will be far more effective if we work together. Our time, resources and energy are not infinite. 

At every step, we must ask if our efforts are helping children and adults with autism, and we must reject every distraction to that mission. We must not waste time and energy on unproductive and wholly retrospective debates. Therefore, with this letter, I am asking that you instruct the staff of Autism Speaks to refrain from further public discussion about the disagreements of the last several weeks and to remove from the Autism Speaks web site the materials I addressed above. And, by copy of this letter, I am asking that the Pennsylvania autism community similarly refrain from additional public recrimination. 

It is time for us again to direct all of our passion, energy and love for persons with autism to our shared goals for their well-being. To do otherwise would be to let them down.

Very truly yours,

Dennis M. O'Brien The Speaker

cc: Pennsylvania Autism Community (via e-mail)

Comments

PhillyMom

Denny O'Brien has been an advocate for autism well before AS came to town. It seems to me, AS came in and "rode" his coat tails, only to make last minute changes on legislation that O'Brien had worked on for a long time. I respect Speaker O'Brien's commitment to HB1150. Is this a win? Well, we will see soon enough if fighting the insurance company is easier than fighting the county/school district.

olerist

In the end, it's nice to know that all that money that paid for those lobbyists and their backroom deals was trumped by "protesting and marching" parents.

"If you are the big tree,
We are the small axe" .. Bob Marley


Angela S.

Meg is right. AS pretended to have the support of the speaker when in fact he went to great lengths to alert us in PA not to listen to what AS was saying, because they were supporting a bill which was much different than the one he had written. Of course now they are trying to say it wasn't much different, because they know how bad they look. If it wasn't that much different then why was the speaker planning to kill his own bill?

Kelli Ann -

I don't understand why you would be pulling your hair out over this? When you ask is it *ever* going to stop...why would you want it to stop?

Would it have been better for the rest of the families in the country if parents in PA kept quiet about what happened?

Sharing the good, bad and the ugly is how we help each other.


Not Quite

"Bottom Line: This is a win and AS helped with that win according to one of the key players involved in the process."

Only that isn't entirely right. It was a win. That part is right, the rest is wrong.
And for AS to post something on their website after the fact to make O'Brien look bad, was childish. Unprofessional at best.

Meg Rose

Kelli Ann you are missing the point. It's not whether or not AS helped to get the bill passed-IT'S HOW THEY WENT ABOUT IT that is the problem. They side stepped the author and champion of our Bill . They proceeded to pretend that they had his support( specifically through an e-mail I received from Shelley Someone in the Autism Votes office), and stood against 62 national and local Autism organizations and advocates including PA's governer and Secretary of the Dept. of Welfare simply to get a check in the win column at any cost. Whether or not AS thinks the language that was removed was unnecessary for a good bill, the author of the bill felt the removed language was necessary-so much so that he was willing to KILL HIS OWN BILL. So to me what AS thinks is a mute point. I personally have problems with A LOT of their methodologies, but this one affected my child and my family directly and I am done being quiet about their misuse of power.

Kathy H.

I agree with Robin. Sounds like all AS is good for is raising money, pushing their pharma med. protocols, hiring actors for their walks to fit their agenda's, taking credit for other's hard work to suit their agenda's. I wonder who and how many of their board members have stock in pharmaceutical companies...........

cindy

Kelli Ann:

Out of curiosity -- were you present at the meeting at Autism One with Peter Bell? The reason for the entire meeting was the folks at Autism One refused to give AS a table, for obvious reasons. They're not well liked. They sent Peter Bell for damage control and spin.

My guess is you weren't there. AutismLink was.

Cindy

Kelli Ann Davis

“Peter Bell seemed nothing more than a professional slick-Willy PR guy with a pretty face out for spin and damage control.”

Wow. The depths to which we’ve sunk is absolutely amazing. Wonder if you would have the guts to issue your proclamation with your name attached securely behind it?

Peter (VP of AS) is the parent of a child with autism who, by the way, has made some pretty bold statements regarding vaccines and autism during the last several months which support *our views* and I think that is progress and something to be commended.

Back to the bill: According to Jim Boulder’s letter from several days ago, AS was instrumental in helping to push the bill out of the Senate Banking and Insurance Committee (where it would have *died* leaving the families of PA without *ANY* bill).

As a result of that push, the bill was released with changes (coverage from approximately 10,300 children as initially introduced by Speaker O’Brien to approximately 4,000 children). The coverage is 36,000 *per year* until the child is 21 for medical treatments like ABA, OT, and Speech.

Now, according to my calculations that works out to be about 144 MILLION dollars *PER YEAR* that families in PA will save starting July 1, 2009. No chump change by any stretch of the imagination.

Remember, many families use these approaches along with biomedical treatments and my understanding is that the language is centered on “evidence based” medical treatments. So what potentially can happen when chelation is used for removing “heavy metals”??

Well, I don’t know about you, but I’d be on the phone with my insurance company in a heartbeat to make the case that “chelating” is an evidence based procedure to remove mercury – a heavy metal.

Bottom Line: This is a win and AS helped with that win according to one of the key players involved in the process. So, can we please just get on with it and focus on productive forward movement and give it a rest?

ASmiddlefinger

At Autism One Peter Bell expressed that parents protesting and marching was not the way to get things done politically.

I think this is an example of how AS wants to work and control the issues irregardless of parents.

It apparently is run and directed politically by those with the corporate group-think. It is that kind of collective group-think and corporate self-interest protectionism that got us and is keeping us in the vaccine debacle. From what I heard from Peter the "collective" agenda is more important than the individuals.

Though incredibly dull, I do wish Ed would post Peter's video on youtube. The room was occupied with "me too" women who where not present for the rest of the conference and often interrupted Peter, speaking for him and defraying the heat whenever they sensed negativity towards him or AS.

Peter Bell seemed nothing more than a professional slick-Willy PR guy with a pretty face out for spin and damage control.

Sam

I went to the Autism Speaks website that they talked about though once I got that AutismLink email with Denny O'Brien's statement (as posted here) and pulled up their side by side comparison. It's on that Autism Votes one that they have.

Amazing that this whole blow up is caused over a few letters, commas and less words than there are in this one sentence I am typing right now. I printed off both of the bills just to be sure Autism Speaks wasn't lying there...just out of curiousity...and they were dead on with the changes that they have highlighted there. I don't know about their personal assessment but it really doesn't seem to be that much of a change...

I'm not a lawyer but I really honestly don't see how the changes Denny made moved from the most detrimental bill on the face of the planet for our kids here in PA to the best bill in the country now that I look at it this way.

Not defending either of them..cause I really just don't care anymore...you would think all this would be over like Kelli Ann's comments below....just find it really interesting. Makes it seem like everyone is trying to save face and when you look at it closely...and doesn't seem like all of the angst that it caused our community is really worth this....

We have a law here now. And apparently it is the best one in the country. You would think our community could just be happy with that.

Cindy

Let's just try to come together, as the Speaker asked. I will (try to) refrain....

Cindy

Robin Nemeth

I don’t know the details of what happened in PA. But I know what’s happened to me, here in Ohio, and I am well aware of what the real aims of Autism Speaks are.

The purpose of Autism Speaks is fourfold. Never mind what their stated goals might be. Here they are:

1. Raising lots of money through raising awareness.

Beyond that they have no goals other than the following

2. Attempting to silence, using the most heavy-handed of tactics imaginable, those who speak of vaccine damage.

3. Helping the CDC and other government health agencies, as well as medical organizations such as the AAP, as well as the pharmaceutical companies, to try to sweep the story of vaccine damage under the rug. To this end they will fund grants to any scientist who is looking in the wrong direction for a cause for autism.

4. Going to gala parties and concerts.

They most certainly are not in the business of helping children or adults with autism, or helping families dealing with autism.

JB

Man, what a surprise from an organization that is trying to do so much good. The next thing you know they'll throw the Mom whose son inspired the founding of the organization under the bus...

JB

Steve

Does Autism Speaks and the AAP use the same PR firm? Just curious.

DJW

Well, it's apparent to me that AS screwed up big time in PA, and they have a politician with the balls to say so. Let this be a testament to anyone who has dealings with AS.

Kudos.

DJW

nhokkanen

The last line in the second-to-last paragraph reminds me of when one schoolkid is naughty but the teacher punishes the whole class.

On a similar note: Yesterday's Minneapolis Star Tribune had a LTE claiming that national animal rights groups are doing similar misdeeds as Autism Speaks -- in this case, diverting funds from the needy. The writer suggested people give to local animal shelters where they can actually see what their donations will support.

Cindy

Maybe if Autism Speaks stops lying??

Kelli Ann Davis

Argggghhhhgghhhhh

(Yes, that's me screaming while I'm pulling my hair out)

Alas, the bill that keeps on giving. Kinda like the "Energizer Bunny" -- it keeps going, and going, and going....

Question: Is it *ever* gonna stop?

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