Dr. Bob Sears Talks about The Autism Book on VoiceAmerica Radio
Toddler With Autism Wanders and Perishes

Autism Speaks Attends the DAN! Conference

Across_bridge_of_hope_cd By Katie Wright

Autism Speaks’ co-founders, Bob and Suzanne Wright, joined me in attending the Baltimore DAN! Conference. Also in attendance was Dr. Anita Sostek, AS grants administrator and Pat Kemp, AS Director of Communications. Thank you everyone for coming to DAN!

Bob and Suzanne were delighted to meet so many amazing parents, researcher and clinicians. My parents know how difficult it is for ASD parents to even leave house and were moved by the site of a thousand parents spending money they can barely afford on babysitters and travel expenses in order to learn more about how to help their children. When scientists attend these conferences they are re-imbursed for their expenses- not autism Moms and Dads!

It was great to spend some time with Pat Kemp. He is the father of a severely affected 26-year-old young man. I cannot even imagine the horrors Pat endured as a single Dad trying to get a diagnosis, education or services for his son 23 yrs ago while also raising two other children. Pat joked that he has developed a thick skin. When people tell him “go to Hell,” he replies, “Too late, I’ve already been there.” I know Pat recognized his son’s issues in many of the lectures. I hope the conference was useful to him.

Anita Sostek is AS’ grants administrator. She showed a lot of fortitude to attend a DAN! Conference with me. Poor Dr. Sostek has only been with AS a year but she listened patiently to my long time frustrations and concerns regarding the scientific advisory board. We had a lengthy conversation about the grants AS has chosen and the grants they have rejected. So I want to say thank Dr. Sostek for being open to different point of view and parent feedback.
My Dad is a low maintenance guy dedicated to his family. He never went out after work, doesn’t smoke, gamble, never had a crazy mid life crisis, etc. His only hobby outside work and his family is golf and the Masters, his favorite tournament. Bob Wright loves everything about the Masters, the intensity, the suspense, the handicapping of players, the Tiger Woods drama, Phil Mickelson…I know, many of you reading this, like me, do not share this love of golf but you know what I mean.  Speaking for myself, sometimes it is those small pleasures in life, a ridiculous reality show, a great (non autism) book, “People” that keep me sane. So wouldn’t you know it the DAN! Conference was held on the same 3 days as the Masters tournament.  My Dad never complained once about missing the whole live event. Instead he diligently sat through hours of lectures taking notes, asking questions and talking to parents.

Highlights included Dr, McGinnis’ comprehensive discussion on how and why regression happens, Dr. Jepson on mitochondrial disorders and autism, Dr. Usman’s healing the gut talk and Dr. Bradstreet’s discussion on the latest biomedical interventions. A low light was Dr. Duane Alexander’s bizarre proclamation that Autism Speaks has decided not to do any vaccine research. For the record Dr. Alexander, Bob Wright says that is categorically untrue. Yes, I would like to see more comprehensive vaccine research but the subject is not off the table.
My Mom, Suzanne, spent hours talking with the DAN! presenters. She loved meeting Dr. Bock, Dr. Hewitson, Dr. Usman, Dr. Boris, Dr. Bradstreet, Dr. Jepson, Dr. Krigsman, Dr. Case and bonded with Dr. Levinson over PTSD. To be fair to my parents it is no picnic attending DAN! with me. At least once I will experience horrible flashbacks to Christian’s regression, hospitalizations, fevers, etc and flee from a lecture room. It’s not a lot of fun for those around me. Dr. Levinson spoke about how and why so many parents are suffering from PTSD. I want to address that some more in another post. Most importantly, these amazing and courageous doctors shared stories of hope and exciting new treatment opportunities. We just need the funding!

Thank you to Jane Johnson for making us feel so welcome and to Lyn Redwood for helping to put together such an incredible conference.

Katie Wright is a Contributing Editor for Age of Autism.


Media Scholar


This "Manhattan" project has bombed just as badly as the first one.

It's not called the vaccine industrial complex for nothing, ya know?


Katie Wright, you are awesome. And you are doing so much for all of us and the cause. But today, Autism Speaks ran a full page ad in the Los Angeles Times advertising their big walk on Saturday at the Rose Bowl.

The ad makes 4 key points about autism:
1 in 110 diagnosed
1 in 70 boys
New case every 20 minutes

And, the piece de resistance:

Oh, really? Tell that to my recovered son, you disingenuous hacks. Tell that to all the DAN doctors who RUN MEDICAL TESTS and are RECOVERING CHILDREN. I know that the ad was created and placed long before they went to the DAN conference. But come on!

"Together we'll find the missing pieces"?!?!?!? Give me a f*$%ng break.

Autism Speaks finding the missing pieces by funding genetic research is like George W. Bush looking for the missing WMDs under the podium at the correspondents dinner. It's like they are making a smug joke at the expense of all those people who gave them money, and at the expense of all those new "cases" -- which, by the way, ought to have read CHILDREN -- being diagnosed every 20 minutes.

Maybe they meant to say "there is no GENETIC detection for autism even though we keep spending tons of your hard-earned money on the same tired studies so we can avoid looking at the real reasons for autism and thereby stay in the good graces of the powers that be". That would have been more accurate.


DAN FAN: "I'm a great admirer of Katie's articles and advocacy. But Katie is not AS. Not even her parents are AS. Only AS is AS. And AS has a $17 million payroll to meet and office space in the middle of Manhattan before a dime goes to autism."

Right on, Dan. And the burning question would be - why did Katie's parents setup an organization over which they hold no control whatsoever? Doesn't seem like good business sense to me. It's all very bizarre. It feels like we are not privy to the whole story.

The outrageously high administrative costs are what pushed me to stop participating in any fundraising for AS. I have better things to do with my exceptionally limited free time than to line the pockets of those living high off the hog in the name of a disorder that affects my child. With zero in return.

And why in the hell do they need an office space in the middle of Manhatten in this technologically advanced day and age? Move to friggin' Kansas for goodness sake!

Daniel Park

To Jenny:

Do you have links / references to the studies you mention on Vitamin D deficiency and inflammation? We always wondered why my son always appeared to do better during the summer months. This could potentially be the reason. I'd like to do some more reading on it...

thanks, Daniel


The really big question to ask is why does anybody feel there needs to be tons of money spent on vaccine research? Especially since contemporaneous research concluded that Thimerosal should have been removed from all infant and toddler vaccines.

Admittedly, over time it's so easy to forget the big stuff.

The big stuff includes the CDC computer lady who told Congressional investigators her full time job was to secretly monitor Autism rates relative to Thimerosal-containing vaccines using VSD data.

See, they were already deeply involved in clandestine activities well before the public had any idea Thimerosal was in vaccines.

More big stuff is the fact that Thimerosal-containing vaccines are pitted against other Thimerosal-containing vaccines in clinical study. Or Thimerosal-containing vaccines are pitted against Thimerosal-containing placebos.


If you fail to understand that poisoning the placebo to achieve balance in adverse neurological outcomes is wrong by default that makes you a complete idiot.

It took totally demented minds to lace placebos with mercury to erase the negative neurological outcomes.

It took equally demented minds to create the anti-litigation bloc of Autism research.

The roots of Autism Speaks goes way back to the days of "moral consolation". The agreements included care for any children harmed by the proliferation of Thimerosal-containing vaccines.

The big stuff people apparently have forgotten, is it was so easy to capture vaccine injured children and put them under surveillance. The unsuspecting parents were ignorant of the facts.

The vaccine manufacturing drug companies were all over the Autism issue long before most of our children were harmed. Some parents are just too proud to admit they've been playing the part of fools.

Now that time and lots of Congressional investigation has taken place these parents conduct themselves like cold-blooded criminals and spies. They vindictively and selfishly protect their self-interests, and present atrocious behavior in the presence of the truth.

In the good old days the Autism charity racket was a great way to conduct Thimerosal countermeasure experimentation. Lots of side drugs to treat the symptoms has meant crazy profits for the same drug companies supplying American babies with repetitive doses of vaccines with Thimerosal in them.

The drug companies are excellent at greasing the right palms. Parents fighting to prevent further exploitation of innocent children continue to do battle against the same hard-core quash squad defenders of brain-poisoning heavy metal each and every day.

We don't need vaccine research. The day the Public Health Service and the American Academy of Pediatrics requested that Thimerosal be removed from childhood vaccines the Autism Research Institute celebrated fully believing the Autism epidemic was over.

Of course, Bernard Rimland underestimated the recourse would be to heel-drag, lie about removing Thimerosal, and make sure Thimerosal-containing vaccines continue to target pregnant women, infants and toddlers.

People forget the big stuff. Like Bird Flu and Swine Flu II.

As a blogger noted about the latter: This reminds me too much of the 1976 swine flu hysteria - my favorite memory is Johnny Carson as Carnac giving "the Swine Flu Vaccine" as the answer to the question "name a cure for which there is no know disease."

The irony is some people in order to make a living prey upon tax dollars coming their way in the form of grants. Naturally, they are in opposition to our children.

The big stuff that people forget is the Sherman Anti-Trust Act. These vaccine manufacturing drug companies and the highly political anti-litigation bloc are tampering with everything they can get their dirty fingers on.

Parent need to work their notes and be ready to provide the appropriate authorities and the information they can when the time comes.

Remember O.J. Simpson.


Dear Lynda Huggins,


'Raymond says "show me the money". Well I can show you over $90,000 that we have raised - a buck at a time - to fund the research we all want - through the Autism Research Institute. Read Steve Edelson's article "Vaccines: The issues and ARI’s Vaccine Initiative" and you will see how the funds collected through the Puzzle Pieces Project will be utilized. Go to ARI's web page and click on the puzzle pieces to join our grassroots effort.

If truly independent research is done - it will be us, the parents, who will fund it.'

When Bernie Rimland was alive I always had a lot of respect for him and ARI and while he is no longer around, unfortunately, I still have a lot of respect for ARI.
What I'm saying is not in reference to ARI.

When TAAP was raising money for autoimmune research into autism, there were lots of organizations/people that were playing political games to make sure we wouldn't be successful and these people/organizations talk a lot but when it comes to money for this important research they are nowhere to be found. They did a lot to sabotage TAAP so it would go out of business, but they stood on the sidelines when Dr. Singh couldn't get funding and Dr. Wakefield was under the gun.

It would have been nice if they devoted their energies for positive results that would have helped our kids. Regards to Autism Speaks, all I see is big administrative expenses (22% of their budget on salaries, etc.) and lots of talk, but no money down for autoimmune research to at least match and surpass TAAP's figure of $130,000.00. It would be nice to see that figure matched and surpassed by all the other US autism organizations (other than ARI). Wakefield wouldn't be in the fix he is in if other organizations had spent more time in funding the necessary research.

Talk is cheap. Action (money on the line for autoimmune research) speaks!!!

Raymond Gallup

Birgit Calhoun

Might Autism Speaks fund some of the studies suggested in the article "The Endocrine Effects of Mercury in Humans and Wildlife," by Shirlee W. Tan et al.published by Critical Reviews in Toxicology? The article reviews studies having been done that affect various endocrine systems. It does not mention autism specifically.

michael framson

Katie, Thanks for all that you do. Tell your dad that I watched the Masters for him. At the same time here are questions for your parents.

1)Has AS done anything to stop children from regressing into anything on the spectrum? yes or no?
2)Has AS helped any children remedy their chronic constipation or chronic diarrhea? yes or no?
3)Has AS helped children with any of the biomedical issues identified by the thousands of parents who attend DAN conferences? yes or no?

If the answer is yes, great. But if the answer is no, then a long, long look in the mirror is in order. Lead, follow, or get out of the way.

And if you decide to really lead, Geri Dawson is in the way.

kathy blanco

Currently, I am helping several studies and lines of research in autism. I didn't need any money. The research I am doing, is what should have been done thirty years ago. I needed just to ask some key researchers if they wanted to test us for certain things/paramaters. Us, as in many moms of autistic children, and their children. So far, I haven't used/asked for any money, just a laptop computer, phone calls (ok, long distance), and a very good premise and idea. Autism speaks, spends millions on furniture, events, walks, to raise money for their position that autism is not caused by vaccines, or environmental problems, but is your faulty genes. To me, they are most evil. They play the facade very well. Of late, not so well.

Until we get honest independent, immune, metabolic, toxic and environmental injury type of research, autism will continue, and the next generation of birthing children, will be normal to have autism, ADHD, allergies, asthma, diabetis, obesity, and many other autoimmune problems. Can't we all see the writing on the wall? It's up to us to stop and prevent autism (prevention does not include abortion). It's up to us, to show people this is not normal to have kids who stop talking (or ever talk), having seizures, gut disease, immune/metabolic problems, and severe pain. It's clearly a shift in thinking that must take place. Moms, Dads? You are more than you think responsible for the health of your body, which is also the future health of your children. This message may seem blame shifting, and or, blaming us with chest beating...it's not. It's about how the world as acquisitioned our health care/mindsets to the point of where we dont' think for our own selves anymore. We must begin to research on our own, what constitutes health? How should our babies be born? What substances are harmful? What "practices" are unhealthy and damaging? For the truth be told, most of what is being told is one fat lie after another. It's time for the walking dead and wounded to finally ask, why do I feel like crap? This may involve deep research, questions, and protocols YEARS before babies. What lies underneath? What have vaccines done to us multigenerationally? What has our food supply done to us? Are we harboring persistent infections that may be passed to our children? Toxins? Do we have an underlying mitochondrial problem? Oxidative stress? Do we have a functioning thyroid gland? Do we have something that must be worked on? If we don't ask those questions, the answers will be autism in your future or some other lovely autoimmune neurological issue. That's where we are at. No doctor is doing the useful, searchable, testing, and finding answers type of practice. YOU have to do it. No one is going to hold your hand through it, YOU have to do it. If we have become as sheepled as I think we have become...some mothers will never know when the autism magic wand will strike...it will be "a surprise", and "we don't have autism in our family"...and the like answer.

Sorry if this sounds like I am blaming mother or father, in no way is that my intention because most of the time, trusting natures do trust and believe in the system. What it is IS, a giant WAKE UP CALL, for all those soon to be mothers and fathers. Guess what? The world is not holding your hand on how to be healthy anymore, not even your very doctor. In fact, the world is doing a fine job in making us extremely toxic. Truth is not in the bandwagon. Not the media soundbites. And clearly, not Autism Speaks.

Sometimes we need to think of our parents as generational trusters. My parents for some time, even though they saw a DPT reaction right in front of their eyes, blamed genes for autism. Until I ravaged the entire internet, went to GOOD conferences, talked to researchers, and equipped with proper and total truth information, did some honest self assesments.... they began to see the evil of it all piece by piece, study by study. There is so much information overload, that one can go nuts just trying to find THE key to why their kids became so sick. But as time went on, I saw exactly what happened, and then realized, autism is a TRUST disease as my final answer. Either we are ingesting too much fluoride to make us "stablized and non questioning" and or we are defunct with all the crap we go through, and or, the general public is mindwashed with toxicity, or, we must become alienated from the core of society, as to how we eat, live, and think about our "medical care", only then, will autism start to be addressed. Health care reform starts with us. Reformation means we change things as we are doing. This means the business of health, is OUR business, not THEIRS. We must know what herb, what substance helps us feel better, not by a bloody pill, or a fly by night thought pattern. Childhood diseases are meant to be childhood diseases. That vaccines incorporate foreign and devastating affects on the body, and lastly, when we push babies out of us, nature knows what it is doing and seldom needs manipulation and maniacle drugs.

Sorry for the lecture, but, it just gets my crawl sometimes, that a so called autism organization has our best interest at heart. I have dealt with the likes of our government to know, that they have NO INTENTION on disclosing what vaccines will do. Or, have done. PLUEEZ.
Get real. This is a multinational gross national product, that many depend on for their livlihoods. It is also a national security issue. Get real, autism answers are in us, not them.

Lisa @ TACA

Katie - thanks for continuing your hard work to bridge the gap. We know you are not an Autism Speaks spokesperson.

Dear Autism Speaks: You have just celebrated your five year anniversary in the non profit world. Please make the difference to unite this community and move towards ENVIRONMENTAL caues including vaccines in your research. NOW. we cannot wait for your 10 year anniversary for this progress.


Is Autism Speakings starting to listen?


Thanks Katie for working so hard. I know this is an uphill battle, and you are fighting for us as well as your child.

Lynda Huggins

Folks we can't wait and hope for Autism Speaks to fund meaningful research. Nor would I EVER trust our government to fund a vaccinated vs unvaccinated study and not massage the data to say what they want it to say.

Raymond says "show me the money". Well I can show you over $90,000 that we have raised - a buck at a time - to fund the research we all want - through the Autism Research Institute. Read Steve Edelson's article "Vaccines: The issues and ARI’s Vaccine Initiative" and you will see how the funds collected through the Puzzle Pieces Project will be utilized. Go to ARI's web page and click on the puzzle pieces to join our grassroots effort.

If truly independent research is done - it will be us, the parents, who will fund it.


I'm a great admirer of Katie's articles and advocacy. But Katie is not AS. Not even her parents are AS. Only AS is AS. And AS has a $17 million payroll to meet and office space in the middle of Manhattan before a dime goes to autism.

And then, vaccines get 2%. Throwing vaccine research a bone is not going to end the autism epidemic.

AS left Wakefield twisting in the wind and AS actively tells parents to keep vaccinating, including autistic kids. When AS' Family Services was contacted and asked if thimerosal is currently in the flu shot, the answer was an emphatic NO. That's an unacceptable error for an autism charity to make.

Let's be honest. Is AS helping or hurting children right now, this moment?

Dawson could aggressively push for a vaxed vs. unvaxed study and end the great "mystery," but where would she find another job that pays $270,000 just for relocation expenses plus a $370,000 salary, in this economy?

Offit isn't the only person with financial conflicts.


Katie, thank you so much for your ongoing work towards bridging the gap between AS and DAN!

AM's Mom

God Bless you Katie and god bless your parents and other AS team for attending the DAN! conference. An open mind is priceless in the world, I pray they all came to DAN! and walked away with the same hope all of us parents get at DAN! conferences!!

Maybe I am naive - but I'd like to believe at long last the Autism community could finally make an attempt to come together and be heard as ONE voice. Can you imagine the power we would have!! So Katie - thank you for the little glimmer of hope. I pray AS will finally do what is right - listen to parents who live autism daily rather than allowing their politically motivated supporters pull the strings. It's time Team Pharma, CDC, AAP, etc. stop being in control.

Jim Thompson

Regarding the comment “So far the drama with you Katie, and your parents, has been immeasurable.”

To be constructive, one must ask--just how many mothers are in a similar situation and what is offered to help them?

One essential answer is the compassion and reason that coexist on Age of Autism--for all family members.

And Katie’s contribution to this community in both those departments is indeed immeasurable.


Thanks for sharing Katie. Love your pieces - usually.
But this one...
Well, did ya write it for us parents? Cuz this all seems like a song and dance performance we've heard for a long time.
Did ya write it for you? Even if ya had said you changed some opinions, changing opinions doesn't equal any change in actions. Best luck with that thou.
Or did ya write it for your parents? Cuz I'm sure we'd all like to know if they have changed how AS funds biomedical research.

love ya, but just

What if?

What if Autism Speaks were to fund some real biomed research projects (the type the DAN docs do with very little funding) and one of the treatments discovered from this research caused Bob and Suzanne's grandson to recover? Do they ever think in these terms? Or have they given up? Or are they so bogged down in the politics of their organization that they forgot why they started it in the first place? Recovery is a very realistic outcome. Personally, I believe that all kids can recover. Many are recovering today and for those who are not, I believe it is because the treatments we have today are not addressing their biomedical issues well enough. Many of these kids have guts that are very injured but not injured beyond damage. Autism is more of a gut disorder than a brain disorder. Let's find a cure for all the kids and end their suffering soon. They cannot wait another twenty years! Autism Speaks is very good at fundraising. Perhaps they should specialize in fundraising and send the money to organizations like ARI to do the research.

Amanda Blinn

Autism Speaks had a booth at our local (Seattle area) spring fair last week. I asked their representative what AS thinks of biomedical research and he said they're not going to fund something there's no medical basis for and then he mentioned that Dr. Wakefield had been discredited!!! I told him Dr. Wakefield is my hero, then thanked him for stumping for our kids the best he knew how (my 13 year old son was standing there with me wearing headphones.) Since the founders of AS went to a DAN conference, which I think is awesome and wonderful news, they need to let the information they've learned there trickle down!


Katie - I think you are fabulous and obviously have a great deal of influence. I think 2% for vaccine research or whatever percent is a HUGE deal - and I'm sure very unpopular. When I saw Dr. Dawson's statement even considering vaccination research - that threw me to the floor. http://www.autismspeaks.org/science/science_news/geri_dawson_vaccines_autism_interview.php. To even say the organization would consider such a thing is HUGE. You and your family (and siblings, if you have any) are selfless. To risk your reputations, your money, to stick your collective necks out for all of us. I remember life before Autism Speaks. Life in just five short years is so different now. You and your family are incredible. There isn't a family on earth I appreciate more. Thank you from the bottom of my heart.

Not buying it

I agree with AL. This whole thing is getting too obvious. Glad to see that I'm not the only one who sees that the game is rigged. Autism Speaks is no different from all other charities; provide cover for pharma, make money and search for a cause but never find.


"To-morrow, and to-morrow, and to-morrow,
Creeps in this petty pace from day to day,
To the last syllable of recorded time;
And all our yesterdays have lighted fools
The way to dusty death. Out, out, brief candle!
Life's but a walking shadow, a poor player,
That struts and frets his hour upon the stage,
And then is heard no more. It is a tale
Told by an idiot, full of sound and fury,
Signifying nothing."

Macbeth Act 5, scene 5, 19–28

In other words, action speaks louder than words. Saying you will fund research is not quite equal to the action of doing it. Can any autism organization do better than The Autism Autoimmunity Project (TAAP)?

Show me the money (and the action, not words!!!!!)!!!!!!
Fund autoimmune research.

Show me the money!!!!


Ahh Elucidatus, another tail-chasing autism-mom groupie.

You want to repeat that one more time? This time put the box of tissues and picture of Katie down, we might understand you better.

"She's on our side" lol.

The org is only 5 years old. I would have hoped by now her "efforts" would have made a dent. Nope. That tells me one of two things.

1. She has no influence, in which case she's just another mom talking about autism. Fine, but don't make yourself out to be something you're not.


2. The effort is for show, and the results are by design.

I have to go with "2" in this case. It has been a lot of years with a lot of nothing to show for it.

...and I've been around longer than most, and certainly longer than AS, but what puzzles me is wtf does that have to do with anything? Are the opinions of parents that are new to this community somehow less important? Nice attitude.

Oh and again, money, money, money. Anything else is sun dried, oven roasted bullsh*t.


Wow.. AL,

You okay there buddy... Do you need to catch your breath? Seems like you said a whole lot of misunderstandings in one short breath.

Anyways, there is some truth to your ranting but you have to understand AL she is not pulling a fast one on us. She is the real deal and when it comes to family its tough to get Gramma and Grandpa to listen.

You see Gramma and Grandpa are used to seeing pieces of shit in white Lab coats that have a pin that says MD, and when these POS's speak about how vaccines don't cause Autism then they believe. So its really tough to get Gramma and Grandpa to even listen to us young folk antivaxers.

So when Gramma and Grandpa say they will be there is a really big thing and ontop of that they have the coin to support our cause. Get with it AL, I am not sure if you have been here long enough on this site to realize that she is on our side.

Peds training is not good enough for my kids

I would like to see it mandatory that all salaried employees of AS attend at least one major DAN! conference per year. And for goodness sakes... the web site needs a major overhaul.


I had to deal with Dr. Duane Alexander when he headed the NIH in 1995 and when he was Dr. Bristol-Powers boss at the NIH in September 1997. I saw him subsequently at a 2001 where he still worked for the NIH (and I wondered when they would get rid of this guy). He didn't and still doesn't care about kids like Eric who are vaccine damaged. Also he was not helpful at getting any autoimmune research for autism started at the NIH.


He along with the CDC, NIH, NAAR and CAN were the reasons why I started the non-profit, The Autism Autoimmunity Project (TAAP) in 1998. From that time to 2005 we raised $130,000.00 for autoimmune research looking at the MMR vaccine link to autism with research by Dr. Vijendra Singh, Dr. Andy Wakefield and Dr. James Oleske. Since that time Dr. Singh left the autism research field because of lack of funding and everybody knows what happened to Dr. Wakefield. It is a real shame no other autism organization could have matched what TAAP did regarding autoimmune research and the link to the MMR vaccine.

If an autism organization had stepped up to the plate we wouldn't have lost Dr. Singh and Dr. Wakefield may not have gone through that inquisition in the UK. Also our vaccine damaged kids may have had some hope.

People like Duane Alexander, Paul Offit, Brian Deer, Poul Thorsen, etc. are the ones winning the war. The researchers like Singh and Wakefield along with our vaccine damaged kids are losing the war.

Shameful. A real Greek tragedy and a sad fact of life that all our families and vaccine damaged kids have to live with.


It all boils down to money.

Show me the money!

All the drama in the world isn't worth five minutes of research.

All it would take is for daddy to call up the same folks who helped get AS started and say "Hey guys, made an ooopsie, write the next check to Autism Research Institute".

So far the drama with you Katie, and your parents, has been immeasurable. However the dollars flowing from AS or even just grandma and grandpa have been a net goose egg when it comes to the cause that you are so vocal about believing in.

Enough talk. Money, money, money.

I don't care who shows up where and says what. I don't care if your dad puts on a dress and says "Call me Suzy for autism awareness".

It all boils down to money, and so far, I haven't seen anything to "speak" of.


I sound like I'm not on our side (our - being that my child was damaged by a vaccination). I am. Very much so. I'm just terrified that if we push too far, too soon - we're in even bigger trouble.


I'm with you AnaB, but I go a step further. I ADORE Autism Speaks - and believe they are under much constraint (scientifically and politically) - they really are trying to be a big tent - and no one is happy under a big tent. It is impossible to be the bee's knees to everyone (and I don't just mean ASD folk and families - I mean scientists). Trust me, I really think there are serious wars going on out there (and I don't mean us) - I mean at the University Scientist Level.

Remember, the CAIRNS people for one - that I posted about here http://www.ageofautism.com/2010/03/fombonne-lord-leventhal-vs-children-with-autism.html? CAIRNS http://www.cairn-site.com/en/index.html BIG YUCK! But, unfortunately - many of them are HUGE in the scientific Autism world http://www.cairn-site.com/en/researchers.html - just poke around the site and then compare this site to what is coming out of the ROCKING UC Davis MIND Institute http://www.ucdmc.ucdavis.edu/mindinstitute/. Now imagine, that these scientists have to work together, sit on boards together, etc. CAIRNS is just one group I know of out there. OH - I've seen many of these CAIRNS members present many times - and trust me, they themselves are VERY different and have very different belief systems (some are thinking in the UC Davis vein). But, just imagine how contentious everything is? What do you think the EVIL Autism Science Foundation is all about? http://www.autismsciencefoundation.org/.

And, the scientific contention is not just in the autism scientist world. Take the Mito world for example. That Natowicz, etc. think that a very large percentage of our kids have mito dysfunction - but MANY other mito doctors think it is more like 1%. THIS IS A HUGE ISSUE FOR US GUYS! Please raise TONS for the Cleveland Clinic, TONS for LADDERS, TONS to anyone in the Mito world that was on this paper... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2584230/. I cannot - I'm in Canada and cannot get tax receipts that will work with Canada Revenue Agency (so my husband would kill me if I raised any money that wasn't tax deductible, as he's always complaining how broke we are - so my donations stay in Canada - if the UMDF was up here - or if there was a mito/ASD star up here - I'd be golden).

And, then think Autism Speaks has to deal with all the parent and autism groups out there: the "just ABA alone" folk, groups like us, or the neurodiversity folk. How impossible! How would you like to work on a committee with ALL of "us?"

But for me, I await every e-speaks with great anticipation. I cannot wait to see what new thing is discovered or new initiative is supported scientifically. Highlights: what AnaB noted - the 10-15%, the EARLI sites (and the expansion to more sites - WHOHOOO!!!) http://www.earlistudy.org/, just about anything that comes out of the UC Davis MIND Institute (where many things are funded by Autism Speaks), the IAN network - how awesome! http://www.ianproject.org/, the fever kids that were confirmed (mine is one of them), the mito work (again, my kid), the explosive head overgrowth kids having autoimmune issues (again, my kid), the gastro conference (again, my kid), etc., etc. God, I feel like my kid's issues represent the typical ASD body profile LOL. Of course, I am very interested still in everything that doesn't pertain to our family - but pertains to many of you out there, e.g., the Fragile X mice, whatever else. I love it all.

I just shove just about every e-speaks under my husband's face and say - "SEE!" Remember, our n=1 anecdotal stories are just that - no matter how real they are to us - and how obvious everything seems to us - they are just that, n=1 anecdotal stories.

I'm just sorry I didn't sign up for Autism Speak's newsletter earlier.

I do not envy the position that Autism Speaks is trying to take. But, I think they are doing a fabulous job with their very welcoming umbrella position.

And, a very big thank you to Mr. Wright. My golf-obsessed father is up there right now rolling over in his grave - imagining that someone would miss the Master's Tournament for an Autism conference.

Kim Spencer

Katie, I admire you so much. BUT over 2 years ago, you gave a wonderfully imploring, almost tearful speech about the research needed to save our children at NAA in Atlanta. Your parents sat in the front row, listened to you speak and I stood up and asked why AS won't fund the research you speak of. You looked at them, looked at me, and said you hoped things were changing soon. Well, they didn't, and my bet is that they still won't.
My husband and I have been to NAA, DAN, Autism One. One thing we KNOW is that you can get enough information at ONE of these conferences to figure out how to treat your child for vaccine-damage. Your parents have known for a VERY long time what needs to be done. Why would their attendance at THIS conference do anything to change AS?


This is very encouraging. What would have been more encouraging is to see Geri Dawson attend. Alas, she really really wants autism to be a psychological problem so she can keep on funding useless research.
On this Thursday, I will be seeing her give a talk in NC entitled "New Directions in the Treatment of Autism Spectrum Disorders" Can't wait to hear what she has to say. Katie, you should come down here and attend! I'd love to hear you ask some questions!


That is great news Katie! Thanks so much for your dedication to the cause! You continue to advocate for all of our kids, and I am so appreciative of you for that. Your parents should be rightfuly proud of the daughter they raised. They must be amazing people.

Angus Files

I guess no tips on who is going to win the masters Katie???will all go on bio-med if we do win...



Bob Moffitt

Autism Speaks the 2%ers asked:

"Did Bob Wright say which decade Autism Speaks will begin to research vaccines?"

In my humble opinion .. Autism Speaks does not have to fund vaccine research.

All I would ask of Autism Speaks is to immediately expand their hugely successful AUTISM AWARENESS campaign .. to include PUBLIC AWARNESS of pending federal legislation that seeks federal funds to conduct a scientific, independent study of "vaccinated vs. unvaccinated" populations, to ascertain, once and for all, if BOTH populations have suffered the same, inexplicable, dramatic increase in chronic autoimmune disorders.

It wouldn't COST Autism Speaks much money to use their powerful voice within the main-stream media and the marbled corridors of Washington, D.C. .. to generate political support for this legislation .. and .. it sure as heck would do an awful lot to recover their reputation within the wider autism community.

Autism Speaks, the 2%ers

Thank you Dr. Alexander for not pandering.

Did Bob Wright say which decade Autism Speaks will begin to research vaccines?

mercury dad

Great news, Katie! I'm astounded at how things appear to be changing at Autism Speaks.

Question: How do we get the scientific staff at AS to drop the party line about the "4 well-designed large epidemiological studies that" deny a link between thimerosal and autism? These 4 studies (all orchestrated by the CDC) have been debunked time and time again. I've personally tried to contact Geri Dawson regarding this, to no avail - She won't respond to my emails. The "mantra" above used by AS in their recent press release regarding the NVICP thimerosal decisions is completely disheartening and belies the fact that much more significant change is needed in their organization before we can rely on them to fight for our kids.

How, Katie, anybody, do we turn away AS from this flawed, CDC drivel?

All my best,


I hope and pray that your parents' visit to the DAN conference is as transformative for AS as my visit to a DAN conference back in 2005 was for my son.

Angela Warner

Katie, thank you for sharing this news with us. All one can do is hope that your parents had an eye opener as to how many and the at which families and children are affected by autism. And that AS will finally make the choice to put their efforts and monies in the direction of what research we the parents really want and know needs to be done to help our children and prevent the epidemic from getting worse.

Theresa, as a military spouse, I have to correct you on your intrepertation of combat soldiers and them knowing when their combat will end. Our soldiers have been deployed numerous times to combat, many times with little or no notice. Their tours are extended indefinitely, repeatedly. More times than not, they like us, have no idea when their tour will end. That is why the comparison was so striking and accurate. Like you, I too, look forward to more discussion on this issue. There is much that could be done in terms of supports for families that is not being done, that would potentially alleviate alot of the PTSD causing stressors that we all face.

Katie, thank you again for sharing. It's a start, right? :)

dan olmsted

Katie, thanks for offering this insight. I saw your father in the elevator after Jepson's talk and he told me he thought it was pretty much "on target." Re the issue of genetics, I think the ultimate answer is that genes alone may cause zero percent of autism. Stay tuned. -- Dan


At first, I thought your first mention of PTSD meant something else in addition to post traumatic stress disorder, only to keep reading when you really meant post traumatic stress disorder! Once again, I'm assured that I'm not the only one. Thanks, and say thanks to your parents.


To Bob: It seems like all the illnesses you list are all talked about in conjuction with inflamation. They are so so prevelant right now. There is all sorts of research coming out about their correlation to vitamin D deficiency. Maybe there is a substantial portion of babies being born from vitamin D deficient parents and so have vitamin D deficiency themselves and maybe it's that population of babies being vaccinated at such a young age that have not had time to develop an inherant way to fight the inflammatory cytokaine response that vaccines are designed to elicit in the body. Maybe Autism Speaks could fund some research into that. Please excuse any spelling errors here. My fingers don't always keep up with my thoughts.

Sue Cranmer

Another good one Katie. I truly hope your parents became more convinced of the real causes of autism and will try to guide Autism Speaks onto a better path for all of us. The stuff about PTSD kind of made me laugh. It really seems pretty self evident that we parents have it and why we have it. The question is what do we do about it that doesnt require more time we haven't got and more resourses we haven't got?

Bob Moffitt

The thing that bothers me most about Autism Speaks is that genetic research has been .. and .. for the most part .. continues to be .. their highest priority.

Obviously, something is "causing" the CDC to report that 1 in every 6 American child ..(the LA Times hints the number may be as high as 1 in 4).. suffers some type of early childhood development problem .. such as .. allergies, asthma, autism, juvenile type 1 diabetes, juvenile rheumatoid arthritis, ADD, ADHD, etc.

Unfortunately, devoting critical financial resources, time and energies on "genetics" has given opportunity for these chronic autoimmune diseases to be accepted as the new "normal" .. while common sense suggests the environment .. not genetics .. are responsible.

Teresa Conrick


This was so nice to read this morning - really made my day! I hope that funding and the understanding of environmental and vaccine damage to the kids sparks some helpful research on both stopping the numbers of kids regressing into autism and in helping our very sick kids now.

I am also looking forward to a discussion on the devastation, the PTSD you mentioned, that we all live with. Since we have been compared to those who have dealt with combat, except our combat duty has no end date..it is infinite.

David Taylor

Thank you for the report, Katie, and the encouraging news of AS's strong presence at the one of the most important annual gatherings for the autism community.

Unfortunately, AS's chief science officer was not there, but instead found time to mouth the party line to CBS:

"We know that the numbers are increasing," Dawson said. "It's really staggering, and we're still trying to understand why."

Followed by the usual non sequitur from clueless writer:

"Autism experts say it's not just one disease but many and that they're largely genetic with possible environmental triggers such as toxins or pesticides and still largely a mystery."

J.B. Handley was one of the first to point out that there is no such thing as a genetic epidemic. I suppose the addition of "possible environmental triggers" is something we should be thankful for and the community should take credit for. Yeah, it's definitely "possible" since the other is patently impossible.

Anne Dachel continues to do an outstanding job hammering on the media's use of "mystery," a word which conveniently allows them to avoid seeing the truth that is crying, defecating, and regressing in their face.


You have wonderfully supportive parents Katie. Please tell them thanks for building bridges.

Dr. Levinson has been keenly observing parents for some time now. I remember at the 2001 Atlanta DAN! Conference, he observed the parents as they proceeded through the breakfast line. Later on, he mentioned that I (and many of the parents) had a real affinity for gluten and casein foods such as bagels and yogurt. "We have to get our fix when we can because we can't get it at home", I responded. Lol.

Maurine Meleck

What great news this is, Katie. Thanks.
Tell your dad that the Masters is practically
in my backyard and he didn't miss a thing(LOL) I stay out of Augusta that week;the traffic is horrible.
Mauriine, North Augusta, SC


Katie - I'm glad to hear that they attended the conference and hope that something good comes out of it. There are many paths that can lead to a good place. Maybe they will end up using the strength and size of their organization to examine the vaccine issue in some small but enlightening way that will shed light some light on the issue. Last week as I was checking out at TJ Maxx, the cashier asked if I would like to donate a dollar for autism research. I choked out a yes, stunned and briefly overwhelmed as it hit me how amazing this was because TJ Maxx is everywhere and people from ALL economic walks of life are in there at some point or another. On the way out the door I glanced at my donation receipt, and ended up feeling somewhat conflicted that it was Autism Speaks. Wow, what if had been TACA or Autism One or ARI. I hope my dollar is the one that goes to vaccine research so that we can finally get the question answered properly and publicly.


Autism Speaks is a floor wax and a dessert topping?


Dr. Geraldine Dawson is chief science officer for Autism Speaks, the world's leading autism advocacy group.

"We know that the numbers are increasing," Dawson said. "It's really staggering, and we're still trying to understand why."

With autism, the need dwarfs the U.S. government response. It spends less than $300 million a year on autism research and services, yet the cost of those services and care is $35 billion dollars.



This is fantastic news Katie. While I appreciate that everyone has a right to his or her opinion, I never have understood much of the criticism towards Autsim Speaks. No org can be all things to all people, which is why we need a dozen or so orgs. And, because of Autism Speaks we now know that genes only accounts for 10 -15 percent of all Autism. Were it not for their research grants into this the so called experts would still be trying to imply that all of autism is soley genetic! I'm glad they attended the DAN conference and look forward to future biomed collaboration with AS in the future.

Sandra Lopriore


This is encouraging to hear as I did not walk for Autism Speaks last year specifically because I feel they have been going in the wrong direction.

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