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Open Letter to Autism Speaks' Suzanne Wright

Suzanne and christianManaging Editor's Note: In other Autism Speaks news, John Robison, Aspergian author and advocate resigned his position on the science board at Autism Speaks last week with THIS explanation.  I've known John since before Look Me In The Eye was published and I consider him a friend. And while John and I differ on neurodiversity, I can agree that every American deserves acceptance and kindness and a full life.  And I am encouraged by these words from him, "I also support the idea of developing therapies, treatments, and tools to relieve suffering and disability from both autism and the conditions that accompany it for some people.  I know how hard life is for some on the spectrum, but I also see the gifts other autistics bring. " I do not see my girls' autism as bestowing gifts upon them - autism hobbles them 24/7. I do love them 100% and if they never make one iota of progress I will always love and care for them. Society, however, will not - unless we work toward treatment, therapies and a huge amount of social services. I do not have autism or Asperger's, so I don't think like someone who does. I think like an NT Mom. It's a distinction we sometimes ignore as we point fingers and choose sides. I'm moving past that - I have too much work to do for my kids. I have found AS to be as effective as a fish on a bicycle, disingenuous and and counterproductive to everything that darling boy in the photo (who is much older today) needs. My $.02.  Thank you, Anne for this open letter.

By Anne Dachel

On Nov 11, 2013, Autism Speaks put out an announcement---their "Call for Action."

Suzanne Wright wrote there was to be a "first-ever national policy and action summit" starting Nov 12 in Washington.  She sounded an alarm about the lack of response and the need for action regarding the autism crisis in the U.S.  
I carefully read what she said and I have a lot of questions about what this summit proposes to do.  I decided to write. . .

Dear Suzanne,
I don't really see what you mean by a national plan and I can't imagine America waking up to the autism crisis.
Just what would a "national plan" entail?  So far, when it comes to autism, no one anywhere is doing anything.  Health officials at the Centers for Disease Control and Prevention in Atlanta, the people who get billions of dollars to run health care in the U.S., have barely noticed autism.  
You refer to autism as "a monumental health crisis."  No one at the CDC has ever called autism a "crisis."  "Serious health care concern" is the strongest language they've used.  In fact, regardless of the soaring rate increases that no one can reasonably explain, they regularly announce that they don't know how much, if any, of the increase is real or how much is still more of the better diagnosing that's been going on for years.  Maybe some of your efforts should be spent educating the experts at the CDC.

"If three million children in America one day went missing - what would we as a country do?"
"If three million children in America one morning fell gravely ill - what would we as a country do?"
Seriously, we'd be moving mountains to STOP IT.  We'd find out who took our children.  We'd find out what was making our kids so sick.

We never do that when it comes to autism.  Doctors can't explain it and we pour millions of dollars down a narrow, dark hole looking for a solely genetic cause or some strange association.  We ignore the hundreds of thousands of parents who gave birth to perfectly healthy babies and then watched as they suddenly and dramatically got sick and regressed into autism following routine vaccinations.

Where was Autism Speaks in 2008 when the late Dr. Bernadine Healy, former head of the National Institutes of Health, was on CBS News?  She said we need to look at the children who got sick, the ones who were thriving and happy but who suddenly and inexplicably regressed into autism. Five years later, that still hasn't been done.
"So let's dial back a minute and consider the babies being diagnosed with autism every day in this great country."

So why are children being diagnosed like this on a daily basis?  When I was young, I never knew a single child who displayed the symptoms of autism.  Not one.  I never knew kids who couldn't talk or who wandered away or who rocked and banged on things continually.  I sure know lots of them today.

With all the money Autism Speaks raises, why hasn't AS funded that one study that could really shed some light on what's causing autism?


Why doesn't anyone want to see a simple comparison study of fully-vaccinated and never-vaccinated children?  It would settle a big question overnight. If one in every 50 never-vaccinated children also has autism, the proof would be there for everyone to see. There are now so many parents too afraid to vaccinate that the study group is out there. Our health officials do retrospective studies like this all the time but they refuse to call for one that could end the most heated controversy in pediatric medicine.  And neither does Autism Speaks.

"Financially, we estimate it costs 2.3 million dollars to care for one person with autism for their lifetime."

Actually, that figure is way off the mark.  It was from a study done by Michael Ganz at Harvard back in 2006.  At that time he told me it was a "conservative" figure.  I have friends in Minnesota who have a severely disabled autistic teenage son who lives in a group home.  They told me that he'll easily cost the state over a million dollars by the time he's 21---and that doesn't include that cost of his education.  

 "There is no national plan to build a city for 500-thousand people."

I'm sure this comes from the oft repeated statistic from Autism Speaks that 500,000 children with autism will be aging out of school in the next decade.  There are calls to provide for these young adults.  Any logically thinking person would want to know what's going on here.  Why isn't there anything for them?  Why can't autistic young adults go where autistic adults have always gone?  And where exactly is that?  Why can't anyone show us the 40, 60, and 80 year olds who act like so many of our children with autism?  Why hasn't AS funded a study to find the one in 50 adults with autism?  I'd settle for one in 200 or 500---especially adults with classic autism with all the obvious signs. If we continue to do nothing to stop this disaster, we're going to have to build lots of cities for hundreds of thousands of adults because they're going to keep on coming.

Finally, it's too bad you weren't in D.C. on Nov 7.  On that day, a group of parents held a congressional briefing on the Vaccine Injury Compensation Program.  One of the speakers was Rolf Hazlehurst  who's an Assistant District Attorney General for the state of Tennessee and the father of a boy who developed autism following vaccination. 

He described a government program so corrupt that no one can legitimately say that there isn't evidence vaccines cause autism and that the government doesn't know about it, because they obviously do.

Last Nov 29th your husband gave testimony before the U.S. House Reform Committee.  He said that his 11 year old grandson Christian was born healthy and was developing normally. "We thought he was very precocious. He seemed to be brighter than average. He had an enormous vocabulary and then he lost everything."

He added, "I'll tell you without any secret, my daughter firmly believes that vaccines were the relationship that triggered him into this pit."

Shouldn't part of our "national plan" also include finally honestly and thoroughly addressing this issue?

Anne Dachel, Media editor: Age of Autism


For psy


So, no conflict there then, eh?


If you do some quick googling you will find valid research examing the connection between vaccinations and autism. No connection is supported.

Zina Cohen

Bob, Suzanne, Katie,
I have read several books on Autism and feel drawn to the illness. I agree with so many that it is very strange that children are doing fine and then vaccines change them overnight. These mega doses are wrong; many children cannot handle the power of these drugs. It is time to attack the illness from the vaccine side. Parents need to be aware and stop doctors from vaccine OD!! Zina

George Bjornson

CDC reported a 78% increase in autism prevalence from the 2002 to the 2008 survey, for the 13 sites common to the two surveys. This increase of 1.78 over 6 years corresponds to doubling of autism every 7.2 years. Since the same diagnostic criteria, and the same sites, were used in both surveys, this proves that we are experiencing a severe autism epidemic.

The autism prevalence for the 2008 CDC study (reported in 2012), which was one-in-88, applies to 8-year old children in 2008, who were born in 2000. The most likely assumption is that the rate of increase of autism prevalence (doubling every 7.2 years) has not changed. Hence we predict that in this year (2013) one child in 25 will be born with autism or a related disorder.

CDC management is double-talking around these obvious conclusions that are inherent in their data. Why? Do they have a reason for denying the existence of a severe autism epidemic?


Linda; I have thought the same thing.
I don't know - I felt like when I asked them questions over the internet that it was lack lustered.
The only thing that came out of it was -- don't let anyone know they have autism becaue of the insurance companies.

that was -- I think almost a decade ago.

I forget what information I was needing -- if I remember right; it was something for my two nephews -- something basic -- about programs within the state of Mississippi. Autism Speaks was useless on the most basic information and did not seem to want to even direct me somewhere else to find out.


Is it possible that too much is expected of this one charitable organization? Shouldn't the blame for lack of progress be directed at our government? Should the government be delegating management of this growing crisis in whole or in part to Autism Speaks (if that is what is happening)or is our government guilty of sitting back and allowing Autism Speaks to do its job? In other words, is some of this anger misdirected?

cia parker

I asked my daughter's county family services case manager what the plans were for housing autistic adults. He said that at this time they're living at home and their parents are taking care of them. I asked what was going to happen when we parents died or got too infirm to maintain a household for our autistic children. He said they didn't know, they had no plan. None. Hoping to wake up and find that it was all a bad dream, I guess.


Because Autism Speaks is simply a CONTROLLED OPPOSITION tool. 50 Shades of Ignorance, who cares which shade they are. Dance the ignorance with the arrogance of the White Coats bantering parents and it is no wonder the boiling point was missed. History will see today as a second coming of the Dark Ages. And today's school children will never think twice about an era when this epidemic of neurologic damage never existed. Forced integration in schools is about accepting neurologically hobbled persons as the norm. When they become the norm, no one dare attack the vaccine industry again. And they will march into adult hood only to subject their children to more of the same.


Jeanne, Christine and Katie,
I'm with you on this. Suzanne Wright made a heartfelt speech and she took a lot of heat from the ND community for it. I thought she nailed it!
To me, what John Elder Robinson said was far more offensive. He put "problem' in quotes as if autism were no problem. Other quotes included "there are many ways autistic people can choose to live their (our) lives." Actually, John many don't have a choice that is (as you say) the 'problem.
"autism....confers both gift and disability on everyone it touches" No actually not 'everyone'. For many people there are no gifts in autism.
"We do not like hearing that we are part of an epidemic." Maybe you don't like to hear it, but if you are in fact autistic (and I'm not sure about that) that's what you are. Truth's a bitch!

Anne McElroy Dachel

Thank you, Bob, for the reminder about "Autism Every Day."

This is the reality show we're not seeing in the two minute news clips showing smiling kids on swing sets.

In "Autism Every Day," Alison Singer said that she hopes that by the time her daughter is older "we'll know how to prevent autism." That would mean of course that we honestly recognize what's causing it. It's the toxins our kids are being exposed to. It's the toxins we're injecting into babies and pregnant women. No one wants to admit that of course, so I doubt we'll ever acknowledge that we can PREVENT AUTISM. It's much easier to keep calling it a mystery.

Katie Wright's words near the end said it all:

"I cannot accept to have to throw away this generation of children."

As unbelievable as it sounds, that's what our society seems so willing to do. Every single day we're told over and over that no one is alarmed about autism and we don't really care about what's causing it---all we need is awareness and acceptance and services and inclusion and the world will be a happy place.

Somehow I can't see that happening. I don't know how our society will keep on functioning when all these kids are adults, when their parents can no longer care for them and more kids with autism keep on coming and coming and coming---when we can no longer remember a world without autism. Will someone then ask, "Has it always been like this, we just didn't recognize it?"

Anne Dachel, Media editor: Age of Autism

Bob Moffitt

@ Cynthia .. you wrote:

"Where's our reality TV show? Why can't we do Extreme Makeover, but actually SHOW the autistic boy have a melt down? Autism Speaks wants people to understand autism? Why then do they sugar-coat everything with blue light? Of course nobody knows the truth if you won't show it, even when you have the chance, the money and the names behind you"

I can remember the first time I heard Suzanne Wright speak and the inspiration I got from her words:

"Autism knocked on the wrong door when it knocked on ours".

I remember thinking at that moment .. finally ... someone who has the means and opportunity to tell the world just how challenging caring for .. and .. raising .. a child with autism can be.

Indeed, my encouragement only grew when I first saw a 14 minute film .. produced by Autism Speaks .. which was shown on national television .. titled: "Autism Every Day"

Unfortunately ... that was the last time I can remember that Autism Speaks actually spoke for me and my family.

What happened? I cannot imagine the extent of negative criticism that Autism Speaks must have received after that film was shown .. but .. if memory serves me right ... a well-funded, successful crusade .. to present autism as a "gift" rather than a "challenge" to be met .. was spawned almost over-night.



Well I am going to stand alone here and applaud Suzanne Wright. I do not know what happened with Autism Speaks, and agree that they have failed our children in many ways. However, I agree with every single word that Suzanne stated in her op-ed piece and pray that my wealthy and well connected parents and siblings will some day find the will to stand up for my child and for me the way that Suzanne and Bob Wright have tried to advocate for their precious grandson Christian, and his brave warrior mom, Katie.

There is so much advocacy work to be done on so many different topics in the autism world. The Wrights seem to have chosen to start with low hanging fruit like developing an overall national strategic plan, obtaining insurance coverage for existing treatment modalities and expanding adult housing options. They talk a lot about money issues, which I really like, since autism has taken me out of the workforce and virtually bankrupted our household-something that would not have happened if my child was diagnosed with almost any other illness.

What I wish is that Autism Speaks would overtly commit to just working on these issues and stay away from medical research if it is going to be co-opted by big Pharma within their organization. That way other groups can form to address causation and medical research and donors can choose where to commit their dollars. Just my 2 cents.

John Stone


Quite right. In the video I linked to below Bernie Marcus notes it as a mark of Autism Speaks' success that the blue light is everywhere (though not yet on the White House), but it is the point where gesture substitutes for reality: the real waste of a decade and innumerable lives.

If I was him I would like to have solved the problem instead of glowing blue.


Cynthia Cournoyer

Where's our reality TV show? Why can't we do Extreme Makeover, but actually SHOW the autistic boy have a melt down? Autism Speaks wants people to understand autism? Why then do they sugar-coat everything with blue light? Of course nobody knows the truth if you won't show it, even when you have the chance, the money and the names behind you.


Katie Wright;
Just want you to know that I am thankful for you and your efforts.
I am thankful what your Father said at the Congressional Hearing last year.

I am thankful that both of your parents worked so hard to get something together to help. I am also sorry that in spite of you and your family's best efforts it came to such ruin.

I hope that does not hurt your feelings. But Autism Speaks lacks a lot, and I don't think it is your family's fault.


I'm sorry but ARC's response is like listening to the fiddler while Rome burned. Yes, dignity is of course important. Always. I try to really remember that when I am helping children to toilet themselves, feed themselves, not injure themselves (banging head on wall or biting their own hands, for example) and when I try to keep children from running away off the playground where they could get lost or hit by a car. Or even when I am just helping the child to be understood or understand.
I like that one gentleman with autism (who has contributed here and on RI) mentioned one time that he used to be involved with the neurodiverse but has since not had so much to do with that but has instead started to be involved with research to help non-verbal kids use a computer. I'm not sure that that is possible for every single child but at least that is doing something. This whole PC thing where to question what is causing autism to be so common and research into things like how diet might help, is bullcrap. I think I even heard one commenter say that to ask questions like these was 'demonizing' autism. Ridiculous! And unhelpful.
Betty was right about the fact of the MS groups feeling completely betrayed by the MS Society. In fact now there are many offshoots that have broken away- such as MS Reformed and all the CCSVI groups. They definitely do not feel that the orignial MS Society (basically funded by pharma) wants to help them one bit. Robison should be aware of this.


THANK YOU, KRISTINE! You finally put into words what nobody else seems to have noticed: AUTISM DOESN'T BRING THE GIFTS. Sometimes autism might bestow an ability of supreme concentration (because the autistic person either tunes out the rest of the world or is unable to tune IN the rest of the world), but more often it destroys any gifts, with severe intestinal pain, vestibular issues, tinnitus, dizziness, headaches, seizures, joint pain, and other fun results from autoimmune damage.

We need to repeat this, because it completely refutes what Big Pharma wants us to believe: AUTISM DOES NOT BRING THE GIFTS.


Well done, Anne. I think you hit every issue square on the nose. I'll be curious to see what the response is.


These are some of the words that I read that Suzanne Wright said:
"•On bad days, they are depleted. Mentally. Physically. And especially emotionally.
•Maybe they have been up all night caring for their teenage child who’s having a seizure.
•Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.
•Maybe their child has been trying to bite them or themselves.
•Maybe they can’t afford the trip to a doctor specializing in autism."

This is actually one of the first times that Autism Speaks has spoken for me! Thank you Suzanne! As a mom of a severe kid I find it so hard to hear only the point of view of the parent whose child is just a little geeky. My son wants more medical research to help him feel better in his body. Once we stayed at a Ronald MacDonald House and I looked around the activity room at all the kids with very serious medical problems and I wondered why they all seemed so much happier than my son. Children with severe autism are children who are suffering a great deal and it is inhumane to do nothing about it. Autism Speaks is raking in money in the name of our kids. Why can't they use it to study the gut, study the best probiotics for our kids, and figure out how to get them back to health?!! There is so much exciting new gut research out there and the autism community needs to be involved. If Autism Speaks is controlled by someone else then this is wrong and this needs to be changed!!!


my reply to ARC:
ARC, you are not and have not been there for the majority of autism families I know. When autism rates were 1 in 10,000 or even 1 in 1000, this might be an acceptance level. My son was diagnosed when rates were 1 in 500, and at that time, I asked for you to give us a voice for the very unique challenges of autism, and also share the urgent need for treatments-- because there is a possibility of recovery. You refused.

Now autism is 1 in 50 children, an epidemic, and rates are increasing 17% per year--yet you are still preaching acceptance. When the lifetime costs of 1 unrecovered autistic child/adult costs 2.3 million or more, who exactly, praytell, do you suppose, can be responsible to financially and physically support the rising tide of children who can't function without 1-on-1 help?

Families I know love and accept their children, no matter what. However, unlike genetic disorders or injuries from birth, our kids were damaged by the medical society, and they need immediate medical and dietary interventions in early childhood to recover from the damages.

Our kids don't get help from the day of birth like genetic/known disabilities which are apparent at birth or shortly thereafter. Our kids are lucky to get help by age 3 or 4. You do not speak for my family. Suzanne Wright's daughter, Katie Wright speaks for MY family. I speak for my family.


The negative response by Arc's national director to Suzanne Wright's speech on adverse health affects in autistic populations smacked of highly selective reading and misdirection.

Sadly Arc's top dog chose political PC over practicality -- to amplify the complaints of healthy high-functioning folks regarding public image, rather than acknowledge the all-too-tangible 24/7 suffering of children with painful chronic health problems.

The employees of Arc's state branches are much more in touch with the challenging day-to-day health issues that autism families deal with than those in Washington, DC.

Of course, this is the same capitol gamesmanship used by the pharma-funded vaccine promo group Every Child By Two. ECBT is pushing letter writers to ask Congress to put healthy, non-vaccine-injured people onto a hearing panel whose intended purpose is to spotlight the mistreatment of vaccine injury victims. That's as crooked and useless as loading a hearing on auto crashes with people who've never been in an accident.

Christine Thompson


You had me at "what the f@##"? in your excellent years of reporting as the AoA media rep. I may have confused ASA with ARC (most likely I did, very sorry!) I do know this community is on a "spectrum" and as many have pointed out, if you feel okay in your own skin and don't need answers as to the why and how this may have happened to you and yours, you just want to be left alone and not be considered as an "illness that needs to be "eradicated" I do get it.

However, when aid organizations name themselves Autism Speaks... well, my autism brood isn't articulate enough to speak for themselves. That's where I am forced to step in and provide a voice. There are a lot of "feel good" media packages out there showing us that autism isn't so bad because when the challenging is shown, well what a bummer. Better to put on a happy face. Keep calm and carry on. I did this in the beginning of my family's journey. "What... my son born in '99 has a rare behavioral problem (2003), you say it's 1 in 250? I don't quite know what that means for our family but we want to help overcome this rare (ha, ha) disorder. Let's do photo ops and PSA's to help other families while ignoring the disability at hand.

After our second time "walking for AS" around the Montgomery Fair grounds in MD. I thought, "what is this for? My daughter had just been diagnosed and I was fighting with my family to put her face on the "Team Max T-shirt." I thought I was making a difference in my sleep deprived reality and knew that I was making my extended family happy in that we were all taking action! None of us stopped to think, " what does dragging our damaged children around a track have to do with awareness or healing or finding the root causes of this scourge." My first AS walk was with my son and my second was with my son and daughter. I looked at all the other family members in 2003 and thought, "This isn't the 1 in 250 this is bizarre. Where are all of these children coming from?" Why are we walking in circles around a running track and for what?

On one of my "mommy breaks" I discovered David Kirby's book. I didn't have the funds to buy it but spent a few hours pouring over it at the Barnes & Nobles and my life changed. That journey brought me through to Lynn Redwood, Mark Blaxill & to AoA. Thank you for opening my eyes and truly making me a Thinking Mom.

Anne McElroy Dachel

I do agree overwhelmingly with Suzanne Wright---America needs to wake up to the "AUTISM CRISIS."

But it's not just a crisis because we don't have enough services. It's a crisis because no one is alarmed about so many sick and disabled kids everywhere. Look at the way the press talks about autism with endless calls for only awareness. The real insanity is this acceptance of a disorder that no one knew about 25 years ago. (Twenty years ago, when my son was diagnosed, I was told that autism was a "rare disorder" and John was probably the only child in Chippewa Falls with autism. Today, I can go into any school here and find a number of kids with ASD.)

Something is terribly wrong and we're not asking why it's happening.

I'm most disturbed by the people criticizing Suzanne Wright for telling the truth about autism. They want to see autism accepted as just the way some people are. There's nothing really wrong with so many children now labeled as autistic. They can keep coming and coming and coming--we just need to provide for them.

On Nov 16, The Arc, a national group that advocates for individuals with intellectual and developmental disabilities, published their open letter to Suzanne Wright:

"People with autism, or for that matter other developmental disabilities, are not victims of the predations of some evil actor, nor are their mothers, fathers, sisters and brothers. Instead, we appreciate, as stated in the Developmental Disabilities Act, that 'disability is a natural part of the human experience.'
"Unfortunately, your description of children with autism and their families is polarizing and divisive, creating rifts within a community that can ill afford it in these perilous times. Characterizing people with autism and their families as victims suffering from a dreaded affliction ignores the diversity of the community of people with autism, as well as their creativity, perseverance, adaptability, resilience, and overall beauty of their human spirit. It belittles the many who, rather than seeking to be cured, are striving for their human rights to be accepted and respected. It is far from reality for many people with autism whom I know and who are involved in our work. All are deserving of dignity and respect.

"Certainly, it is true that many individuals on the spectrum, and their families, face serious challenges on a daily basis. The current system of social insurance and social services and supports fall well short of meeting the needs of too many who are in need of assistance. To confront this reality and achieve progress on behalf of and with people with intellectual and developmental disabilities, including autism, the only successful path forward is one which unites, rather than divides. We all must work together."

There were other commentaries published along a similar vein. This leaves me baffled. Why aren't there lots of calls to recognize what's happening, stop the epidemic, and recover kids? WHAT'S WITH ALL THIS ACCEPTANCE? Should we just expect that some of us are going to have autistic kids because that's just the way it is? Too bad if it's your child that stops talking and starts lining up toys and banging their head on the wall. There's nothing we can do to prevent it.

How can autism be happening to us like this? When will autism be seen as the health care emergency that it truly is?

Anne Dachel

Christine Thompson

I'm not sure how many of you were able to view the live stream of the Autism Speaks conference at GW but I was. It's one thing to read a speech online but entirely another to see the actual speaker in context. I too have been disappointed in the direction Autism Speaks has gone. However, anyone who's viewed Suzanne's heart wrenching keynote address to the attendees... well, it was as if my own mother was speaking to me. My mom doesn't always agree with all of my beliefs/concerns but she's been a mess since my first and second child were diagnosed with the "Big A."

I can't imagine what Katie Wright must feel every time one of us chimes in about the rights or wrongs we have endured but I do know her family is muddling through along with Christian trying to voice the grave concerns our community faces on an hour to hour basis. We want answers now & acknowledgment that many of our children will not be able to self-advocate or be those lovable quirky geniuses of Silicon Valley. The next Temple Grandin, perhaps?

I do know when I read the furious backlash from groups like the ASA I'm dumb-struck. I'm disgusted by any organization that deals with the autism community by having the temerity to infer that autism is diverse, mysterious and cause to celebrate on the whole. There are ever increasing numbers of us who have witnessed our children's regression etc. (Big Big ETC.) Who more likely than not have called every assistance/advocate program out there as I have. Believe me, if one of us is calling the ASA, AS, or finding resources online it's not to say, "Hey! I called to tell you my/our child/children are just great! Your organization has been around for a while and I want you to know I'm aware. I don't need or desperately want your help. I know you exist just so I can call and say thanks but no thanks!!" Really, who calls a disability organization to say, "Were Just Great! No Thanks!"

These organizations shouldn't brow beat Suzanne Wright because she spoke from the anguished heart of a mother and grandmother. They wouldn't be around if they didn't find a need to service a most undeserved population as ours is. Awareness isn't enough and acceptance is just another way of saying what crisis.


When Pharma wants control they embed their people on the inside. We've seen this at CDC and FDA approval boards. I think this is what happened in the scientific research department at Autism Speaks. I have no doubt the Wrights intentions are good but I think control over research funding needs to be taken back.

John Stone


It is very well said. To put this in context Autism Speaks was founded when CDC Foundation Board Member Emeritus, Bernie Marcus, approached Bob and Suzanne Wright to found the charity endowing it with $5m of his own money every year for the first five years.

Bob and Suzanne both spoke up about their concerns regarding vaccination in a visit to the UK in October 2008 but little has been heard from them on the subject since, though we note that board member Alison Singer was sacked when she acted out of turn at the IACC to veto exploration of the vaccine issue in a dirty procedural manouevre in 2009.

Unfortunately, Autism Speaks has been paddling fast in the wrong direction ever since its inception crystalising perhaps in the appointment of former Wyeth and Pfizer executive Robert Ring as science director earlier this year. Paradoxically, Autism Speaks cannot work out whether autism is a good thing or a bad thing, locked as it is in with a pharmaceutical consortium trying to develop products with an expanding market as an attraction. The glee with which they announced the discovery of a rate of 1 in 38 in the Korean city of Goyang in 2011 was unmistakeable, although it turned out that 75% of the screened for positive subjects had been removed by their families from the project before it could be completed.

I think perhaps Bob and Suzanne Wright have presided over this with a sense of solemn corporate duty, while the "scientists" and their industrial sponsors decide the policy. We always hope for a change of heart but Autism Speaks has done so much to confuse the picture.



Love Anne's letter here because it calls Autism Speaks to the mat to "do" instead of "speak". That is the only problem I had with Suzanne Wright's statement- it was a lot of words when we know Autism Speaks hasn't really put their money to funding REAL research that looks at causes. They should be giving money to projects like those of Drs. Frye and Rossignol and Jill James. Other than that, I agree with Suzanne Wright!
Robison comes at things from a different perspective than me. I have a nephew with Aspergers and let me tell you, he wants a damn cure- he feels like caca 24/7 and is flunking high school despite being a genius. He has a lot of gifts but AUTISM didn't bring those. Autism has rendered his gifts useless. I won't even mention my 8 year old with severe autism- it's not even on the same plane as what Robison thinks autism is. He hasn't the first clue. I believe in neurodiversity but not as it relates to a diagnosis! I enjoy people with quirks and I accommodate differences and celebrate them. But if you have a DSM diagnosis then you have a disorder BY DEFINITION.


I agree with Anne when it comes to skepticism about the "national plan" Autism Speaks is contemplating. AS has never shown any willingness to question big pharma, and that must be done to develop a truly effective national plan. I disagree with Mr. Robison when he intimates that AS is the only organization aimed at protecting a group that is vilified by the group. Certainly organizations set up to represent people with ME/CFS suffer this same fate. Also, to a lesser degree, organizations representing people with MS are criticized for their connections to pharma. In fact, I think many autoimmune disease organizations are in the same boat. They get money from big pharma, and they just can't bite the hand that feeds them.

I recently learned that there is a form of muscular dystrophy that is considered to be a statin induced autoimmunity -- I heard this in the same week that I learned about new guidelines from the government based on recommendations by the American Heart Association and American College of Cardiologists that expands the criteria for prescribing statins. Now 1 in 44 adult males should be on statins! That includes 18 year olds! Shouldn't the autoimmune condition create more caution? But the MD autoimmune condition is rare, so who cares, right (certainly those that get it care)? What about statins could cause autoimmunity you ask? I'm sure someone could tell you how cholesterol lowering could do that (in fact it is also associated with an increased risk of diabetes), but, in addition, statins are often fluoride based and contain polysorbate 80, two things that affect the blood-brain barrier.

Our medical system gives people the appearance of good health with no pain or effort involved. You don't have to suffer with normal childhood diseases, and you don't have to change your faulty lifestyle to protect your heart. All very good for Big Pharma.

Bob Moffitt

Jenny asked:

"What will it take to move Autism Speaks in a direction that actually helps people beyond their shallow "awareness" campaigning."

If history is our guide .. I think it safe to assume that "raising AWARENESS" will forever remain the highest priority of Autism Speaks.

Consider .. promoting AWARENESS is risk free .. to those upper level administrators of Autism Speaks .. who enjoy overly generous perks, lucrative salaries .. for doing exactly that. No more .. no less.

Why should they risk their own salaries by pursuing more "controversial" measures .. such as .. the dreaded "vaccinated v. unvaccinated" study .. that common sense .. Anne .. and .. tens of thousands of families .. have spent years pleading for?

When all is said and done .. if nothing else .. such a study would finally "rule out" vaccinations as the reason autism has increased from 1 in 10,000 .. to 1 in 160, 1 in 110 .. and now .. the astonishing rate of 1 in 28 in some states.

Nah .. Autism Speaks has a great gig going .. and .. they sure as heck don't want to upset their apple cart .. much safer to keep the gravy train rolling along on the AWARENESS track.

Katie Wright

My Mom is a huge supporter of our families. When she made that speech Suzanne was basically talking about our family's experience with Christian. I used to phone my Mom constantly in tears because I did not know how to help Christian and after a year of early intervention he just got worse. We had yet to figure out his GI issues. I think by National Plan my Mom would like to see the White House designate autism as a high priority, as they did with HIV in the 1980s.

My Mom is the greatest. Suzanne has absolutely supported vaccine research and is hopeful AS will get this done. However, she does not run AS. The person choosing the grants is Dr. Rob Ring. Like many of you, I have been very disappointed with most of the grants AS has chosen. I believe them to be overly conservative, with not nearly enough attention or investment in environmental and biomedical research. Believe me, I have spoken at great length to Dr. Ring about this! I am hoping things change, time will tell.

Tamara Hughes

*enthusiastic applause* I have not followed Autism Speaks for years following the basic corruption that has been found within the organization. I agree, with John E. Robinson's pulling away...hopefully more people will be become aware of their foul play.

Thank you for writing this on behalf of the millions of parents out here who are desperately trying to heal their children in the best possible way we can and all the while being bullied and pushed into continued vaccinations, even though we know that's how it started. And no...they haven't bullied me. They've tried, they haven't succeeded.

Thank you,
Warrior Mom from the Ozarks.


Does Suzanne have any power?
I think that Autism Speaks was infiltrated very early on and became usless except to collect money.

You could feel it when you went on line -- big shiny website that looked like it had tons of good information on the surface that if scratched just a tiny bit it all fell away as some kind of Hollywood western town set.

I beleive that was as far back as nine years ago

Still waiting for AS to do something to actually help


You have outdone yourself. What you wrote could not be said any better. I hope that this is a HUGE wake-up call to Suzanne Wright and Autism Speaks. To date, they have not only squandered millions of dollars, but also years' worth of opportunities to stop this tragic epidemic and to help those already affected by it. May she have the ears to hear, the eyes to see, the mind to comprehend, and the heart to care to finally do something productive and worthwhile.

Thanks, Anne.


I hope John Elder Robinson's separation shed's some full spectrum light on the upcoming "blue-light" season. What will it take to move Autism Speaks in a direction that actually helps people beyond their shallow "awareness" campaigning.

Are they involved in any epigenetic projects yet, funding them or using them, like this one: or here

I commend Mr. Robinson for his decision and look forward to hearing whether he finds another organization more inclined to respond to individual needs of those on the spectrum, rather than to the individual needs of those on the board.

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