June 29, 2007

Requesting Answers and Actions from Autism Speaks

June 28, 2007

From: Ginger Taylor, M.S. of AdventuresInAutism.com

To: The Greater Autism Community

For just over a month I, and many others, have been writing about our concerns over the way Autism Speaks has been using its considerable resources. During its two year existence, funds have been directed toward projects that yield little improvement in the quality of life for those with autism and AS has reportedly shown an unwillingness to cooperate with, or even acknowledge the contributions of, all but a few large autism groups. This action is in direct conflict with the public image held out by AS that they listen to all those in the autism community and that they wish to speak for the autism community.

Because Autism Speaks is raising tens of millions of dollars a year from the public based on their claim that they are serving people with autism, they must be held to account if these funds are not indeed being spent on projects that serve autistics.

Thus far, the only response from anyone at Autism Speaks has come from Jon Shestack, founder of Cure Autism Now and board member of Autism Speaks. Mr. Shestak has posted a public letter stating his earnest intentions, asking for restraint and patience in criticizing AS to give them a chance to respond on the merits, and calling on the board of AS to do some self examination to see if it is time for a change in direction. I believed that his public stance was both reasonable and admirable, and I committed to waiting to hear from AS.

After a week, during which Mr. Shestak stated his intention to respond to my open letter to him, the silence has continued. It is rumored that AS has no plans to comment on the issues that have been raised because they believe that ultimately the controversy will not cut into their bottom line. I do not know if this is accurate information, but it may explain the deafening silence from AS.

In light of this, I am proposing that those in the greater autism community, those who have not been invited into the “Big Tent” that Autism Speaks has stated that it wants to be, express their concerns and frustrations directly to Autism Speaks in one concerted effort. For the next two weeks I will be collecting letters from those in the autism community, both from individuals and organizations, who wish to directly question AS on their direction, methods and actions, and who wish to make specific requests of them. I will be delivering these letters to Autism Speaks under one cover letter.

If you would like your letter to be included, here are the requirements:

  • Your letter to Autism Speaks be in good faith.  This is not an opportunity to vent the frustration that many of us have, but to open a constructive dialogue and attempt to get real answers and action. 

  • Your letter to AS be specific.  List specific complaints and specific actions that you want taken.  In my letter to Mr. Shestack I asked, “… if we compile a list of hard questions that we want answers to, a list of “awareness” messages that we want circulated, a list of service projects we want undertaken, a list of legislation that we want lobbied and a list of research that we want funded, will the AS board give us open, concrete answers and actions, or legitimate justifications where they will not?”  Your letter should be such so that AS can have the chance to make specific answers and take specific action.

  • Your letter to AS remain private for the time being.  Autism Speaks should have the opportunity to respond privately, either to you specifically or to the group as a whole, before the letters are made public.  You may not post your letter publicly until AS has had a reasonable amount of time to respond to it privately.  I will announce an agreed upon date.

  • Your letter must be signed and include your contact information.

  • Your letter must be submitted to me at ASLetters@AdventuresInAutism.com by July 13th, 2007

This debate as to how to best serve those with autism is becoming increasingly contentious. While that is regrettable, it is also reasonable because ultimately, the quality of the lives of millions of people world wide is at stake. It is my belief that the only thing that will change the tone of this debate is very frank, very transparent conversation followed by very concrete action. The days of paying lip service to the treatment and care of those with autism, and those yet to be born who may potentially be autistic, are long gone.

It is time for those who hold the most power in the autism world to allow themselves to be held accountable to those whom they claim to serve.

Ultimately the only value in this exchange will be if it leads to improvements in the quality of life for those with autism, their families and their care givers. It is my earnest hope that this will refocus our efforts onto serving them directly.

Ginger Taylor, M.S.


Anonymous said...

You've got to be kidding. Who says A.S holds the most power? That's a matter of opinion. Everyone has their own idea's of what's the best intervention and methods and everyone argues on what to research. I think this needs refocusing period. Leave A.S alone

Anonymous said...

Yes, I agree with you -- Autism Speaks is way off base especially with the Wrights at the helm.

But who appointed you to be the autism community's spokesperson?

You want to let AS know how you feel. Write them a letter or call them up. Don't represent me please.

Ginger said...

To the second anon commenter, was your note directed at me or at the previous commenter? I think it was me so:

One of the aims of this is to actually let everyone speak for themselves. The concerns you may have with AS may be different from mine.

So far they have ignored the questions, complaints and letters of many in the autism community, and it looks to be their policy when confronted with difficult issues.

The first letter I got today was from a man who wrote to them several months ago and never got a response. I would be happy to include any appropriate letters formerly submitted to AS that remain unanswered. I understand that there are a lot out there.

If ignoring is in fact their policy, then it will show itself.

I need not speak for anyone in this process, just collect letters, present them together, and report whether or not they in fact practice a policy of ignoring those they claim to serve.

This forces the issues. Either AS is a legitimate organization that works in good faith, or is isn't. This gives them the opportunity to tell us which.

Anonymous said...

my question is, A.S has been running for how long? all of a sudden people are questioning them? it isn't hard to figure out why, either. why stop at A.S? why not send letters to all organizations? your right on about forcing the issue alright, this is forceful and demanding and I'm just not quite sure why any of us would have that right. it seems to be to be a wasted effort. it's an organization that belongs to thr Wright's, not any of us.

Ginger said...

"I'm just not quite sure why any of us would have that right. it seems to be to be a wasted effort. it's an organization that belongs to the Wright's, not any of us."

Reasonable question.

It does not 'belong' to the Wrights really. Non profits are obligated to serve those that they say that they are going to serve. People trust them and give their money to them believing that the NPO will use it to best serve those in need.

If this is not happening, then the public should know so that they can direct their donations more accordingly. Celebs should know so that they are not tying their name to a group that they will regret associating with later.

NPO's are morally accountable to everyone in the community. They should have to answer reasonable, legitimate questions as to whether or not they are meeting their own mandates.

In this case, AS is coming into a community and taking a good deal of money out of them, so local autism charities cannot raise as much money. If that money never makes it back into that community via services or treatments, but goes to celebrity fund raisers that don't actually raise any funds, that needs to be known.

Anonymous said...

I got it, you expect them to answer to you and dictate where their donations are spent. the ones who's have the right to question are those who donated. if they have no problem with it why should you. we all know where and what A.S is spending it on. are you or were you expecting to benefit from their donations? A.S has not affected donations where I live.

you're attempt is to discredit A.S, good luck to you and that effort. I doubt they'd spend the time of day reading one letter and answering it, let alone a collection of letters.

Ginger said...

All due respect Anon, I don't think you get it.

Anonymous said...

all due respect Ginger, yes I do 'get it' and the timing is impeccable to recent current affairs. it isn't hard to figure out where this is all coming from. I'm sure right about now the Wright's have been flooded with e-mails and snail mail. I see no reason why you shouldn't attempt to add to it. good luck.

manycausestoautism said...

So what it is, is that if you have your own theory as to what the cause is and its not the same as yours then your a worthless organization??? If they don't agree with your theory of the cause then their money isn't spend wisely??

Ginger said...

Is it your supposition that AS should be able to spend money in questionable ways, ignore researching valid treatment options, and ignore legitimate questions about what they are doing, and anyone who has a problem with that should do nothing, say nothing?


Ginger said...


No it isn't.

AS is the one ones in control of this. They know how to talk. They have the resources to answer questions.

If they have a reasonable reason for not exploring treatment options that are working for thousands of families, they can justify their actions.

It is odd to me that these last few comments seem to give the impression that they think that I CAN cause damage to AS.

Either I have a point, people might listen to me and AS needs to re-evaluate, or I am wrong and who the hell cares what I think.

Anonymous said...

well, if you're questioning (target) one, why not question them all. I can think of a few to add to the list. you determines what is valid treatment options ? you? me? or their board members? thats why they have board memebrs.

you cant cause damamge to A.S, they are bigger than you and in that statement pretty much says that is what you're trying to do.

Autism Speak was the one who got the media's attention on autism to begin with. everyone was jumping up and down over them. 2 years later what changed? ask yourself that and you'll find the motive for this.

manycausestoautism said...

Treatment options are per families. It's not AS choice to decide them. It takes the family to research their choice of treatment. There are many options out there. There are other ways to find information. AS doesn't make the choices for the family. AS has put information out there to teach awareness. They have done a lot to make the public aware as to what autism is. what I am getting from reading this blog is that if you don't agree with Katie's opinion or treatment options then all treatment options are dismissed.

simple_parent said...

Autism Speaks has done so much good for all the community. I am quite sad people are thinking they can damage their good reputation for some odd personal gain. It looks to me you're jumping on the mass letters just as was sent to NBC. What ever you're attempting by all of this, if it does ever have any effect, you're not at all thinking of the larger picture and that is of who Autism Speaks currently helps: kids, research, media attention to autism. We all need Autism Speaks.

"Celebs should know so that they are not tying their name to a group that they will regret associating with later." Large insinuation on your part and nice that you're considering celebrities monies above the autism community. "so local autism charities cannot raise as much money." You'd never be able to ever achieve the amount of money Autism Speaks get's in a fund raiser.
I agree with Anonymous, I can read between the lines as well. This is a flame war against Autism Speaks.

Ginger said...

Ok everybody.

Not a flame war.

Yes everyone should be questioned, even me.

Don't really have a personal agenda except that I want kids to stop getting sick and start getting better so I can go back to my life.

Who cares about motives. Any of us can only guess at what our true motives are any way. Our job is to DO the right thing.

If there is something that you would like me to DO differently, then please, just ask. If you think that a question that I am asking is unreasonable, then let me know why and suggest another one.

But I reject the idea that AS should not be questioned on their decisions by those they claim to represent.

I reject the idea that asking legitimate questions of AS will damage their reputation if they are honest and earnest and work in good faith.

This is not about fighting, it is about having a REAL conversation.

If you want to have a real conversation with me, then please follow the same rules that I am requiring of anyone who wants to question AS.

Tell me who you are, write in good faith, be specific on what you want answered and what you want done.

simple_parent said...

The thing is, you're not being specific as to what you're questioning, and I'd ask that before I ever offered any letter. It's all about motives. Motives you've talked about of Autism Speaks, and your own motives. If they do answer you, I doubt it'll ever be acceptable. One thing you mention in letter writing is your blog, you refer to this. : "List specific complaints and specific actions that you want taken." and it goes on to "we want we want we want". Where is the good faith in 'we want'? This is not a Government organization. And would you be asking ASA these same questions? What have they been doing and their agenda? I have not seen one ad from them on TV.

If you think Autism Speaks is the one who will make all kids better, you're unrealistic. Your request is reactive and untactful. There is nothing proactive in this but demands and expecting change. Autism Speaks very gracefully tried to tell us all they were unbiased and I hope they don't fall victim to every blatant demand from every parent who has a child with autism. No one person or organization, no matter how small or large, will ever be responsible for all children with autism. And that is what you're trying to pin on this organization alone.

I also disagree. This is a real conversation.

Jon said...

ginger, where did my response go?
jon shestack

Autism Reality NB said...

"For just over a month I, and many others, have been writing about our concerns over the way Autism Speaks has been using its considerable resources. During its two year existence, funds have been directed toward projects that yield little improvement in the quality of life for those with autism?"

Are they not funding autism research?

Ginger said...


It is on the other post's comment section:


Ginger said...


Yes they are funding autism research.

But the science board has a tendency to award research grants to themselves.

A huge grant has gone to Gary Goldstein's Kennedy Kreiger Institute to build a database. The problem is that Gary Goldstein is also the head of AS's science board that awarded the grant.

This is one of three grants issued to and by the same people.

What are the odds that of all the possible research proposals in the entire world, the most worthy one just happens to be the one proposed by the head of the board?

One of the questions that is being asked is, is there any kind of independent review of grants that go to board members or their institutions.


Perhaps there is a good answer for this that we have not thought of. Perhaps part of this story is wrong. Perhaps there is some mitigating information that I don't know.

The only way to clear that up is to ask AS. That is what this is.

Anonymous said...

just for over a month. this all has to do with research, and what they are researching, not so much who or where the research is being done. the Kennedy Kreiger Institute is a good Institute. good thing Gary Goldstein is on the board. he can tell them first hand about the Institute and probably be a watch dog over the data base. are you even aware how organizations work before you accuse only them? hard to believe you'd even make such a complaint. this isn't about actual grants and how AS spends it. it's about grants and wanting it spent on biomedical and we know this because it was stated for over a month letters of concern have been written. coincides quite well with the release of the Statement from Bob and Suzanne Wright, Co-founders of Autism Speaks. this is about poor Katie and guru's jumping on her band wagon trying to get her parents organization to research 'other' things.
people, open your eyes!

none of your letters are going to alter a thing. their own daughter cant alter a thing so you thinking you can will prove frustrating for you. you got an independent review from Generation Rescue? ever hear of privately funded? lets all send letters to them asking where they got their telephone pool and prove it was not members of their own organization. they just spent a ton of money on a study. sounds like AS doesn't have monopoly on fund raiser funds after all, you think?

there is a good answer for all of this. get on the board of AS or get over it. just because they're not researching what YOU want them to or where YOU want them to, too bad. ask all you want, none of them have to answer to you. hello!

Ginger said...

“The thing is, you're not being specific as to what you're questioning, and I'd ask that before I ever offered any letter.”

These are spread out on my blog and others but written as articles about AS. Many have not yet been put in the form of specific questions. This will allow people to put all their questions to AS very specifically in a form that they can answer easily.

It's all about motives. Motives you've talked about of Autism Speaks, and your own motives.

Ok… this gets takes us way off topic into theories of human nature, but here goes.

There are actions – the thing you do, intentions – the outcome you want to achieve from the thing you do, and motives – the personal thing that drives you to do the thing that leads to the outcome. Actions are easy to judge, they are right or wrong, successful or unsuccessful, wise or unwise etc. Intentions are a little harder, but can be figured out. My stated intention is to bring about concrete measurable improvements is the lives of those with autism. You can judge whether or not questioning AS on their research grant process will lead to that or not. Motives are not so hard to discern, even in ourselves. Everyone wants to attribute good motives to themselves. We all want to believe that we are only doing what we do because we are good and unselfish. Even really destructive people can justify their completely wrong and even illegal actions by claiming to have good motives.

I think most people are wrong in their estimation of their own motives. I think the bible is right when it says, “the human heart is wicked above all things, who can know it” and that the idea that ‘there is no such thing as an unselfish deed’ is correct.

The firefighter who saves the child from a burning building does a good thing. Was he motivated only by altruistic duty to the community, or did he become a firefighter partly because he wanted women to think he was all brave and hot. If part of what motivated him to run into burning buildings was to make himself look good to others, it in no way diminishes the fact that saving a child from a burning building is the right thing to do.

If we only did things in which we had pure motives, no one would ever do anything.

I am not going to bother to defend my motives, because ultimately what ever “odd personal gain” may be in play, asking AS to answer for their questionable tactics is either, right or wrong, constructive or destructive, wise or unwise.

So getting in arguments about motives, while an interesting intellectual exercise, and something that everyone should do for themselves, does not impact whether or not an action is good or an intention is earnest and valid.

Intentions should be looked at. If Jon Shestak or me say that our intentions are to cure autism, then you can look at our actions and see if they are really moving anyone closer to a cure. Intentions can be earnest and sincere, but just wrong. I think that people who show earnest intentions, and are open to correction where their actions are not lining up with stated intentions, are working in good faith (regardless of what motivates them to do it).

So that is my overly wordy, not as clear as I would like, treatise on motives.

“If they do answer you, I doubt it'll ever be acceptable.”

You might be right here. The reason that I am so firm on asking these questions, is that I can’t think of reasonable justification for Park Avenue office space and $340,000 salaries. It is hard to imagine that the best use of research funds actually is to go to the members of the science board.

But as Mr. Shestak points out, AS should be allowed to answer detractors based on the merits. Rather than just sitting around detracting from AS, I am giving them a chance to answer on the merits. If their answers are good ones, it won’t matter whether or not I accept them. If I don’t accept legitimate answers, then I am the unreasonable one and everyone can make their own judgments on everyone and everything, because everyone’s cards will be on the table.

“would you be asking ASA these same questions?”

Don’t have to at this point - ASA is coming out and talking for themselves and making changes:


“If you think Autism Speaks is the one who will make all kids better, you're unrealistic.”

I am not. I am merely asking them to be accountable for their actions. Very realistic expectation of them if they wish to retain the public trust.

“Your request is reactive and untactful.”

Tact has not gotten AS to come to the table. I have been tactful for two years now. How long should one remain polite and ‘wait and see’ in the face of questionable tactics? 2 more years? 5 more years?

What is your suggestion for doing this differently? Or do you think I should not be asking questions at all?

“Autism Speaks very gracefully tried to tell us all they were unbiased”

This is part of the problem. They say that they are unbiased, but their actions say otherwise. People do what is important to them. If they were not biased against environmental triggers, it would be reflected in their research grants, their talking points, content on their web site, etc… Their only move in that direction was a fundraiser that raised a million to research environmental factors. That fundraiser was done by Katie. Katie is now gone. Where will that environmental research money go?

That is one of my questions.

”I also disagree. This is a real conversation.”

I should have been more specific. This conversation might contribute to our understanding of one another personally, but going around and around in circles about ‘motives and tact’ does nothing to get solutions to families to help them in their struggle. It is not a productive conversation where it matters.

The conversation that Mr. Shestack started here: http://adventuresinautism.blogspot.com/2007/06/jon-shestack-of-can-and-autism-speaks.html
Is a constructive one. But that conversation is on hold, and in its place we are having these conversations that don’t really lead to change or put any one on a better course

Is that a better description?

Ginger said...

“it's about grants and wanting it spent on biomedical”

Yes. That is exactly what this is about. I have stated this repeatedly, children, including my son, are improving from biomedical intervention. AS is spending their money on things that do not have an much promise.

“People, open your eyes!”

Again… there is no hidden agenda here. I want to know why AS is not investing their money in these promising treatments. I am watching my son change in front of my eyes. If a group claims that they want to cure autism, they should be looking into the treatments that seem like they might be a cure for autism.

”None of your letters are going to alter a thing.”

Repeating… this is part of the problem. People write to AS asking legitimate questions and they continue to go unanswered. You are making my point for me.

You got an independent review from Generation Rescue? ever hear of privately funded? lets all send letters to them asking where they got their telephone pool and prove it was not members of their own organization. they just spent a ton of money on a study.”

Generation Rescue has openly offered all their data from the study for review. They are actually encouraging people to pick it apart.


”Get on the board of AS or get over it.”

Do you know where I might get an application?

Seriously though, I just reject this statement on its face.

“just because they're not researching what YOU want them to or where YOU want them to, too bad. ask all you want, none of them have to answer to you.”

No they don’t have to answer. And when non-profits stop answering reasonable questions, people should know.

And I think I am going to go ahead and move to disallow anon posting. I want to be able to answer questions on this topic, but we need to get back to constructive discourse. Perhaps that will help.

Ginger said...

and to "manycausestoautism" I agree with your name. Autism is not one disorder and has several contributing factors. My vaccine only posting as of late might lead one to think other wise, but not so.

I just think vaccine is probably the most frequently occurring trigger in the US and the one that is the easiest to correct.

I am harping on vaccine hard, because it is being denied so vehemently, but I want to make sure that I clarify that genes and other environmental issues are in play.

Mimi_PhD2B said...

Genetics loads the gun, but environment pulls the trigger. I completely agree there are many causes of ASD...but the link between ASD and vaccines cannot be ignored.

It is ridiculous to me that this argument is even happening...much less on this blog. All the people in the ASD community should be united in their search for a cure. If AS is unwilling to research all options, they should not represent themselves as speaking for the ASD community as a whole.

I applaud Ginger for her efforts to educate the ASD community about AS and the multiple causes of ASD. It is ridiculous to think that wasting time arguing with her is going to stop this whole movement. It is even more ridiculous to ignore or dismiss the link between ASD and environmental causes.

If you are not part of the solution, you are part of the problem. Ginger is trying bring awareness to all of the solutions and the people on this blog arguing with her and continuing to perpetuate the problem.

Lee said...

***“it's about grants and wanting it spent on biomedical”

Yes. That is exactly what this is about. I have stated this repeatedly, children, including my son, are improving from biomedical intervention. AS is spending their money on things that do not have an much promise."***

there you go. I am sorry but you cannot dictate what AS spends their funding on, and they have clearly made their own statement but you're not listening. non profit or not, every single one of them has an agenda, just as Generation Rescue does. they are also bias to their research.

we all should be entitled to a search and a cure, if that's what you want. but you're pinning it all on one place as if they rank highest above all. they can research whatever they want

***Yes. That is exactly what this is about. I have stated this repeatedly, children, including my son, are improving from biomedical intervention. AS is spending their money on things that do not have an much promise. *** that is a matter of your opinion. many children progress with many different interventions. you're attempting to make all research biomedical? why?

***If you are not part of the solution, you are part of the problem. Ginger is trying bring awareness to all of the solutions and the people on this blog arguing with her and continuing to perpetuate the problem.*** what solution are you talking about? do you expect something to actually come of this? this is not a solution. even if AS research as you're demanding, it would not have the immediate outcome you're expecting, would not serve all children with autism nor do all parents choose such biomedical. I cant nor should anyone else applaud someone who is attacking a organization that is doing such good things. attacks never get anything accomplished. efforts here is not to stop anyone from doing anything. it's to open eyes and think what you're saying and doing so you can be most effective and this manner is certainly not the way. it's the blind following the blind. you're not doing any child any good with it and in fact could be hurting thousands by the mere attempt.

by preventong conversation also makes you one sided and dictating to accept only those to comment when their points and opinions do not match your own. that should say enough.

rlneub said...

The problem is that the research AS supports is one sided. I do not think all money should go to biomed, but I would think some should go there. After all, a LOT of parents are saying their child improves on biomed. Why not investigate this?

Lee said...

if genetics loads the gun, wouldn't you think without knowing why environmental's effect this should be known? a trigger is a trigger and there may be many than just the one. and unless you know what part of the genetics allows this, you'll never begin to know how to cure or prevent autism.

Organizations most often are one sided, and they can be. that's how it works. no one can make them not be. you have a choice of starting your own Organization and research your own idea's. everyone cant all research the same things. maybe AS will research different things during time, maybe they already have researched other things. they stated they are open-minded, they didn't want anyone of their celeb's to think they were one-sided like their daughter. it could have been a bunked statement just to save face and maybe they're not at all in disagreement with their daughter. ever think of that? and that's where all this controversy and letter-writing comes from, is the Wright's statement. you know it, I know it and so does everyone else. I'm not sure why many of you cant accept and acknowledge all the god things AS has done for the autism community regardless of what they decide to research.

Delia said...

It is disappointing that there is so much criticism against Ginger's initiative. Ginger should be receiving praise for her efforts. Without people like her volunteering her time and effort to a cause such as this 'watchdog' initiative, we would have much more abuse in the NP system. I wish I had half the dedication that Ginger displays so that AS and other NPs out there would truly represent the ASD community and not be motivated by their own agendas. AS absolutely is accountable for their actions! My family raised over $5000 for a CAN walk and I want the money spent on biomed interventions. I raised the money because I wanted to find a cure ("CURE" Autism Now) and I am disappointed that AS would disassociate itself from KW's stmts. She speaks for me, as does Ginger! You go girl! I'm behind this 100%!

nogggin said...

I sent a letter to Alison Singer, of AS, a day or two after she did an interview with the Wall Street Journal a few months ago. In the interview, she used her position in the media limelight to tell the world that autism is caused only by parents with bad genes.

The organization made an attempt to clarify what they meant by posting a statement on their website afterward, saying, if I remember correctly, that they didn’t mean to imply that environmental causes couldn’t possibly be a factor. The text was gone a week or two later. I wonder how many people saw it, compared with the number of people who read the WSJ.

Here is the letter that I sent to her. I guess I am not too surprised that I got no response.

***You’ve clarified your statement to the Wall Street Journal, on the Autism Speaks website. This, however, is insufficient. You had an opportunity to reach hundreds of thousands of people. You used that opportunity to help those whose agenda is to profit from the poisoning of our children. How many people do you think will read the clarification of your statement that is on the Autism Speaks website?

Do you think that parents of autistic children are going to be less offended by being told that they have simply passed on bad genes than they were at being told that they are at fault for their child’s autism because they let their child watch too much television, or because they are cold, refrigerator parents? Do you have any notion at all of how offensive I, as a person who once considered myself a person with Aspergers but now considers myself a person who has been mercury poisoned by my government, finds your ridiculous statement to the Wall Street Journal?

If I had been interviewed for a story in the Wall Street Journal, and I misspoke, and I left the impression that the only cause of autism is bad genes, or if I’d been misquoted, or had my words taken out of context, I would be doing everything within my power to make sure that this was corrected. To make sure that my real intentions, my real meanings, were properly conveyed. Publicly. Through the main stream media and the press. Not on some website that far fewer people (and people who are for the most part already largely informed regarding this issue, anyway), might happen upon.

Will I be seeing a statement from you any time soon on the television, or the radio, or quoted in the press, in which you state your belief that environmental triggers should be looked into as a cause of autism? Could I dare to hope that you might want to raise awareness about mercury, or possibly even the horrible ‘t’ word – thimerosal?

Do you believe that mercury could contribute to developmental and neurological disorders? Are you aware that there are a huge number of parents and scientists who do? Or am I to believe that you’ve never heard of the word ‘thimerosal’? Why do you continue to so adamantly insist on ignoring the big huge stinking gorilla that is sitting right in the middle of the parlor? If you have heard of the theory but believe it to be a crackpot theory, even a crackpot theory warrants a mention, once in a blue moon. Unless it is a theory that you would prefer would just go away. Unless it is a theory that you, like the pharmaceutical makers, are afraid of.

I understand that you have a child with autism. I will not pretend to understand what it must be like to have a child with autism. I will tell you that I understand what it is like to be afraid of having a child with autism. To be told that your child might have autism. To watch a child unable to interact with her peers. And although I am not diagnosed with Aspergers, I understand what it is like to have it.

How can you look at yourself in the mirror, knowing that you are helping the people who’ve caused your child to be the way he or she is? Nobody can be inside another person’s head, but I will tell you that it isn’t easy being mercury poisoned. It hasn’t been easy for me, and it isn’t easy for my children, and we have only the most minor of symptoms. Imagine what it must be like to have severe problems? Imagine what it must be like to have severe gastro intestinal pain? To be unable to interact with the people around you. I know you probably have done this, tried to imagine this.

How can you live with yourself knowing that you are helping the people who’ve done this to your child?

Do you tell yourself that the skull and crossbones on the Thimerosal bottle means nothing? That it’s the concentration that makes a poison, and it’s not high enough in vaccines to cause harm, even though according to the material safety data sheet concentrations like the ones in vaccines are too high to be flushed down your toilet? Do you ignore the fact that there were no safety studies on Thimerosal prior to it’s use in vaccines? Do you ignore the thousands of papers which discuss the toxicity of Thimerosal? The graphs which show an increase in autism with an increase in thimerosal exposure? You and the vast majority of the people and the dollars in your organization ignore all of these things in order to concentrate on a search for the genes that make a few people slightly more prone to the affects of a neurotoxin than other people. What you and the government officials and the scientists who are focusing their efforts on genetics are doing is akin to blaming the people in Auschwitz for their own deaths. Because they had the bad misfortune of having particularly bad genes. It must just be that those jewish genes are particularly susceptible to the affects of nerve gas. Oh well, too bad for the jews.

You ignore the efforts of the manufacturers to buy up the media; that most of the commercials on my nightly news on any station I watch in the evening are sponsored by the same companies who appear to now be sponsoring you and your organization. You ignore the efforts of manufacturers to buy indemnity from Congress, for the harm their products cause. You ignore the fact that the unvaccinated children with autism or asthma are almost nonexistent. You ignore all of the conflicts of interest. With two clicks of my mouse I can show that the safety study of Thimerosal that was paid for by the CDC was conducted by the very same people in Denmark who’ve profited from the selling of Thimerosal containing vaccines in the US. You ignore the fact that data has been kept from the public, in violation of the freedom of information act, or else lost. You ignore the fact that the CDC has said mercury should be removed from vaccines, but then has done nothing to enforce that this occurs, but rather backpedals, now, in an effort to protect it’s clients in the drug industry.

I can’t fathom any of this, but what I really can’t fathom is how you manage to ignore the fact that you are helping the people who’ve destroyed your child.

I don’t believe that people go to hell when they die, for the sins that they’ve committed. I believe that they create their own hell here on earth, for the sins that they’ve committed. The hell you’ve created must be a horrible one indeed. It is only too bad that your child must live in it with you.***

So, that's what I sent her. I was pretty upset when I wrote it but I stand by it now anyway. As I said I wasn't surprised to get no reply.

I was, however, very surprised indeed when I showed up at a recent AS sponsored benefit concert at the House of Blues in Cleveland. I was on the sidewalk in front of the venue, handing out information flyers about thimerosal and autism which looked a lot like this:


I was told by the management at HOB and by the women of AS who’d organized the event that I had to stop and that if I didn’t, I would be arrested. I wasn’t doing anything illegal (the chief of police came and told me that I could stay), or accosting anyone or being rude to anyone.

Robin Nemeth

Moi ;) said...

Ginger, I am trying to read the posts previous to this and your blog won't let me.... :/ I was away and am trying to find out what all has been going on!!!

Ginger said...


We had a server crash this week and my email is apparently not working correctly.

I have not gotten notification of any comments posted on the site so I haven't read this.

Please forgive. Let me catch up.