AAP Shows Up

[Guest guest]

http://adventuresinautism.blogspot.com/2008/04/american-academy-of-

pediatrics-shows-up.html

The American Academy of Pediatrics Shows Up in Autism Treatment

The Defeat Autism Now! Conference was last weekend and the big news

was not that McCarthy showed up, but that the American Academy

of Pediatrics showed up.

After years of inaction and obfuscation, this was action number two

taken by the AAP in just one week.

AAP not only showed up, from what I can put together, they really

listened. They saw that the doctors presenting were their doctors and

that the families in the audience were their patients. They got that

the research and the interventions had a solid base and that medical

approach to treating what is currently diagnosed as `autism' has

already begun with out them. They got that it is time for them to

begin investing in what we have started.

I hear that they understand the multisystem failure that is going on

in our kids and the multi system approach that is needed to address

it.

I think they got a taste of how wrong it has been that parents

complaints to, and questions of, doctors have been treated with such

hostility, and that doctors who spoke up for our children were

ostracized.

… and I got the feeling that they might even have been a little

impressed with the way that our community has taken back an entire

arena of medicine from drug companies and insurance companies and

hospital systems and all other things big medicine.

The first step in building bridges, real relationships, is to show up

and listen. They have done that.

But now comes the hard part for the AAP… what to do with that

information. They know it is real, they know that we are on the

level, and they know that the treatments are working. Can they take

that and do what really needs to be done, no matter where the trail

leads?

Are they ready to announce that vaccines are the big trigger? I don't

think so. I would be surprised if they were ready to do that yet.

Vaccination changed their profession dramatically, and for the

better, and to come to terms with the fact that it has crossed the

line and gone too far… to admit out loud that they have caused so

much damage… that will be very difficult. Not just for the AAP body

as a whole, but for each individual pediatrician.

Are they ready to start participating in real research with us? I

think they very well might be on treatment options, but good vaccine

research, a real vaccinated vs. unvaccinated study? That is the

million dollar question.

In this Age of Autism (to borrow from Dan Olmsted), where parents

like me have been burned and burned hard, action talks and bull****

walks. We watch every move that docs make and judge carefully who is

really looking out for the best interests of our vulnerable children,

and who is looking out for their own interests.

I have, in no way, hidden my contempt for the actions of the AAP over

the last decade for what they have and have not done in the autism

epidemic, and for the potential disaster that will take place if in

fact Tayloe does take charge of this body.

But the current leadership of the AAP has gotten my attention with

their actions in the last week. I think that they are in a rare

moment in time where a state of flux is occurring, and there is a

possibility of them turning a corner and making a real attempt to

redeem themselves.

Voices that are usually squelched are being heard.

I think this is a fragile window. Failing to continue to move forward

with real action, and assuming that reverting to bull**** public

statements will placate autism moms and dads, would start closing

that window quickly. The reign of Tayloe would kill it stone

dead.

I have a few words of advice for the AAP if they are concerned with

stopping the slide of public trust and keeping the vaccine program

from crumbling:

1. Say goodbye to your ego.

If you got into this business to be treated like the big guy and want

to stay the big guy, then you will only get in the way of bringing

our children back. If you can get past yourself, you will start to

see beautiful stories of healing in families that have been

devastated. You have the chance to become a part of something amazing

that is happening in families who were told that their child was no

longer functional and should be put away. Choose to see life return

even at the expense of your pride (and your Mercedes and your

vacations).

2. Tell the truth, the whole truth and nothing but the truth. No

matter what happens, no matter the fall out, no matter the shame. You

have one chance here to clean out the cancer that is the lies that

have been told to American parents by the CDC about vaccine safety.

If you take this time to CYA, then you won't get another chance.

3. Find a nice, dignified excuse to set Tayloe aside as the

next AAP president and choose someone of integrity and character like

Jay Gordon who will treat vaccine injury with seriousness and the

intricacies human body with humility. I personally won't listen to

any doctor who listens to Tayloe.

4. Actually participate in real vaccine debate. When what passes for

a debate only includes those whose livelihood depends on vaccination

continuing, it is not a real debate.

What has been referred to as the `vaccine debate' for the last four

years since the IOM decision has looked like this: A panel of doctors

from the CDC, AAP, IOM, NIH, HHS having mutual admiration society

catered by GSK while congratulating themselves on eradicating polio

and rubella, inside a building owned by a hospital that is owned by

an insurance company that is owned by Merck, while parents and the

doctors who listen to them and heal their children are locked outside

banging on the door trying to get in.

None of the parents' points, complaints or questions are addressed,

and if one does manage to get in, she is told to sit down or is

escorted from the building.

Literally.

Registered nurse, Lyn Redwood, one of the first mercury moms, a very

smart, dignified and soft spoken woman who had testified before

congress, when attending a CDC public meeting, asked why the

committee would not state a preference for pregnant women to get

thimerosal free vaccines. She was told to sit down.

When CDC held a press conference on vaccines in 2005, we went to the

HHS building in DC, but weren't allowed in the room to ask questions.

Parents were escorted to a `holding area' with a TV so we could watch

it remotely. Lyn was there with us.

Later, we tried to talk directly to pediatricians. Generation Rescue,

a brand new organization at the time, rented a booth at the 2005 AAP

convention in DC, and Lyn and her husband, physician Tommy Redwood,

were among the parents there to share with your doctors.

Our message was printed on a large banner that stretched across the

back of the room, " Autism is Preventable and Treatable " . When we

arrived, The Redwoods, along with other parents who had been raising

valid and responsible questions about the vaccine program, were

prevented by security from entering the building to work at the booth.

The most heart breaking thing about that fear based, controlling

decision, was that Lyn's recovered son was also turned away from the

building. His name was actually printed on the list given to us as to

who would not be allowed to man the booth. Pediatricians from around

the world had a chance to meet and interact with a recovered child

face to face three years ago. The pictures I brought of Chandler were

paltry replacement for a real live talking boy, but you locked him

out.

If you want to build faith with us, then a good sign that you are

ready to take responsibility for your actions would be to apologize

to the " DC 7 " Bono, Bono, Lyn Redwood, Tommy Redwood MD,

Will Redwood (now 14 years old), Fournier and Gilmore.

And then continue the REAL vaccine/autism debate that begun on Larry

King last week. Get a hall in DC, a really big one, and let's face

each other and slog through all the research and records and deal

with this. You are gonna get yelled at, just like yelled at

Karp, you are gonna see a lot of tears, you are going to have to eat

a lot of crow and it will all be on the record. But that is what it

is going to take to put humpty dumpty back together.

5. Apologize for harming our children, not treating the injury and

not listening to parents when they tried to tell you about vaccine

regression and recovery.

We know that you were lied to. We know that you have to depend on the

CDC to give you guidance. We know that they have orchestrated this

nightmare charade.

But you did not meet your ethical obligations to proof them. Your

leadership continues to hold out crap studies like Verstaeten,

Denmark and Fombonne to disprove the vaccine autism link. You need to

remove your stamp of approval from them, admit that they don't prove

what people have claimed that they prove, and join us in asking that

they be retracted. If you do that there is still a chance to salvage

something.

You have serious culpability here, but we know that you are not the

source of the big lie.

6. Clean up this mess. Take action now. If you try to play the `death

by committee' game like the IOM did, parents will start tuning you

out at the first mention of the words `task force'.

You have to start with this: Autism treatment is not a top down

operation like other approaches to defeating an illness you are used

to. If you could have understood it the way we have illnesses like

rubella, you would have by now. If it could be tackled the way HIV

was, then the Autism Speaks modus operandi would have yielded

results, but it hasn't.

Autism, or `Autisms' as successful practitioners have come to define

it, is not one thing, and is extremely complicated. So you can't

start with the `disease' and then apply lessons to the child. You

have to start with the individual child to get to the `disease'

It is a varied syndrome and our kids pick a la cart from a long list

of physical problems.

Get a copy of Jepson's book, Changing the Course of Autism in

the hands of every one of your members.

Tell them to call their patients who are diagnosed with autism into

the office for a long sit down to find out what parents have been

trying with them, what is working and what is not. Have them listen

to the child's whole story, a COMPLETE history of all that has

happened since before conception. They will learn huge amounts of

information doing this.

Walk into the DAN! docs offices and start putting eyeballs on our

kids. Physically examine them and start testing.

Get DAN! docs to hold training sessions all over the country for AAP

members.

Invite local parents to speak to your pediatricians and tell them

what they know. We are not doctors but we are experts on our children.

(You wanna be really smart? Do what the smart DAN! docs do. Encourage

your docs to find the brightest autism mom in town who is treating

her child, the one that the other mom's call with questions, and hire

her as their research assistant and parent liaison. They are plowing

through the research every day, they live in an autism lab, and they

talk to all the other researcher moms every day.

They are expert medical investigators.

Take advantage of them.)

And when your members start reporting the things that they are seeing

to you, listen to them and coordinate that information.

Bottom up, bottom up, bottom up.

7. What ever you do, you better do it with the doctors we already

trust.

8. What ever you do, go where the results are. Your work towards

recovering our kids should not include learning from people who have

not contributed to the recovery of a child with autism. Look for the

people who are bringing children back and find out what they are

doing.

And if you give people who still aren't sure that there is even an

actual increase in the rate a seat at the table, you will just be

wasting our time. This is about discussion and cooperation that leads

to action, not pontificating and lecturing in order to hear yourself

talk. If they are interested in genetics or counting heads, then

leave them to their business. Their business is not the business of

treatment, and this is about treatment.

9. Whatever you do, you have to offer total and complete transparency

about everything.

10. And whatever you do, please understand, you have to do it fast.

With our autistic children, we have a window of time, starting when

their injury happens, to heal them. That clock starts the minute we

get a diagnosis and we work like madmen to heal our children before

that window begins to close.

Now you are in our shoes. You have been given the diagnosis, that

parents were right and that you have lost them. You have a window of

opportunity to heal that broken relationship before that window

starts to come down hard and fast.

I hope you understand that you have to work smart, work quick and

work from our organizational model, not yours, to keep that window

from slamming shut on you.

And I hope you understand that the window will start falling hard and

fast on June 4th.

Because if you are not with us in Washington, we will know that what

you have done this week is bull****.

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