KATIE WRIGHT ON AUTISM SPEAKS' GRANTS
By Katie Wright
People frequently ask me what I think of Autism Speaks and are surprised by my answer. I believe the creative team, the administrative staff, the incredibly hard working special event and Walk staffers are amazing. They all could be pursuing more lucrative careers elsewhere but truly want to help autistic kids and their families.
My parents, Bob and Suzanne Wright, are also tireless in their efforts to bring attention to the needs of our families. At a time when it seems as if the whole world, especially in the Middle East, is angry with the United States, my Mom has successfully engaged in a wonderful collaboration with the Sheika of Qatar in order to have the United Nations declare a World Autism Day. This is only the third time the U.N. has recognized a disease in such a way. Autism Speaks has, undoubtedly, lifted the shame and isolation so many families felt by forcing autism into many public forums in the media and government. Their work on insurance re-imbursement is also extremely important to all our cash strapped families.
It is Autism Speaks’ scientific advisors that I find myself at great pains to understand.
It appears as if they are wedded to the past and are non-responsive to what parents want and the immediate needs of our children. By any measure, autism is worse than ever and traditional research has yielded few breakthroughs for children living today. So many ASD children are living with horrible GI disease, seizures, serious immune deficiencies, pain induced self-abusive behavior…
Meanwhile AS has funded eye gazing research on fruit flies, a study on the olfactory senses in worms, endless gene research, yet nothing relevant to the pain my child lives with on a daily basis. Parents have waited for three years in hopes of seeing real biomedical research. Of course there is a place for gene and brain research in autism, but not at the expense of toxicology, immunology, regression, gastrointestinal and vaccine safety research. Preservatives in children’s vaccines such as: aluminum, ammonia, formaldehyde, mercury and human embryos have never been adequately researched or proven to be safe, nor has the CDC’s extremely aggressive vaccination schedule. Everyday infants are injected with these preservatives, combination vaccines and live viruses. There is no more time to waste. We are in the midst of a catastrophe and must be unafraid in pursuit of answers.
It appears as if AS grants are selected less as a result of the significance of a research proposal but more as a consequence of the financial resources of academic institutions to put forth in producing most professional and conservative grant applications. Instead of funding impactful, breakthrough science, millions of dollars are spent on researching the same safe subjects over and over again. Numerous exciting, innovative and progressive biomedical grants on GI disease, methylation pathways and toxicity, vaccinated and unvaccinated siblings have been repeatedly rejected due to ignorance and fear. It is past time for the scientific advisory boards to think outside the box and pursue the bold research parents want and our children desperately need.
Donald Trump’s recent comments are wonderfully illustrative of how out of touch with reality the AS’ SAC is. Mr. Trump is the parent of a young boy and is horrified by the recent explosion of autism. Mr. Trump stated that he believes the “massive” increase in vaccines for infants could account for autism’s rising numbers. Mrs. Melania Trump has spoken openly about how she spaces out Barron’s vaccinations. So while some SAC scientists still debate whether or not autism is actually increasing, why it one in 90 American boys in the spectrum does not equal an epidemic and pursue their lonely quest to find the “autism genes,” parents have moved on.
Regarding the most recent grants for young investigators, I question the wisdom in investing such great financial resources in researchers new to the field while the grants of experienced DAN! physicians who work to recover kids every day are continually ignored. AS needs to invest in doctors who have been treating and recovering so many autistic children, not just in academics with the best team of professional grant writers. Hopefully, Autism Speaks’ summertime clinical grants will reflect a broader, more biomedical and relevant approach to helping our children. In the meantime, I encourage parents to educate themselves about biomedical interventions via other websites, such as: NAA, SafeMinds, ARI, TACA, Generation Rescue, FAIR Media and Thoughtful House.
I know that Autism Speaks is trying to change. There are some truly courageous voices on the SAC, but they are too few. I am, however, optimistic that Dr. David Baskin’s new environmental committee will green light some exciting research. I am also hopeful that Dr. Geraldine Dawson, AS’ new Chief Scientific Officer, will be more proactive than her predecessor and champion the innovative environmental research families want to see funded.
On another subject I want to thank Deirdre Imus for her wonderful essay in the Huffington Post about the New Jersey vaccine mandate. I feel heartbroken for the New Jersey parents who must choose between day care, school and more vaccines for their toddlers and school age children. Why mercury has not been removed from every flu vaccine simply defies comprehension. One would think that New Jersey, possibly the autism capital in the country, would approach vaccine mandates with great caution. One in 60 New Jersey boys is on the autistic spectrum and the vast majority of parents believe that vaccines played a role in triggering the disorder in their children.
It is astounding that the American Academy of Pediatrics yet again, ignores parents’ concerns and testifies, again, in favor of the adding even more vaccines to the overcrowded schedule. Exemptions will be almost impossible to procure. Parents with one ASD child are now placed in the horrible position of having to over-vaccinate younger siblings, despite their well-founded concerns about the impact of so many live viruses, dangerous preservatives and combination vaccines on a developing brain.
It is time for the researchers, politicians and the AAP to stop listening only to each other and start listening to the families of autistic kids.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.
I have twin sons. Both received the same immunizations. ONE developed Asperger's. The same son, came VERY VERY close to dying from an illness we NOW have a vaccine to prevent: pneumococcal pneumononia/sepsis. As a pediatric health care professional and a parent, I believe it is extremely dangerous to not protect children from preventable diseases by providing them with immunizations.
Posted by: Amy Harness, MSN, RN | April 04, 2012 at 04:15 PM
Birth Defect Research for Children (BDRC) sponsors the National Birth Defect Registry which collects data on structural and developmental outcomes as well as the prenatal and preconceptual health, genetic and environmental exposures histories of both parents. In 2009, BDRC released a report of an analysis of 137 cases of Autistic Spectrum Disorders in the data base. http://www.birthdefects.org/research/ASD%20Report%202009.pdf This report raises some interesting new hypotheses about the autism epidemic. However, since it is based on a small number of cases, confirmation of early findings depend on additional case reports.
Posted by: Betty Mekdeci | June 17, 2011 at 11:09 AM
Dear Katie,
I am an educator who worked with an autistic girl for the past two years. I have designed an unconventional education program for her and the results are amazing. She went from totally uncommunicative to speaking full sentences in both English and Spanish. Not only can she speak Spanish, but she can also interrupt for you. I have recently retired from the educational system and will be joining forces with a wonderful biomedical doctor who has also had much success with his autistic patients. I am very interested in applying for some grants, do you know where I should go for this information? Thank You
Posted by: Margaret Scardina | June 09, 2009 at 02:36 PM
Dear Katie,
I am the mother of two boys, the oldest of whom has autism. We are seeing a DAN! doctor and seeing some wonderful results with the biomedical treatment.
The Austism Speaks Walk is coming soon and I was going to participate and then remembered your story. I hesitate to raise money for an organization that does not seem to believe in biomedical treatments or environmental assaults upon our children. Are you aware of any other event that would raise money for such research?
Thank you,
Michelle Oricoli
Posted by: Michelle Oricoli | March 08, 2009 at 07:01 PM
Dear Katie:
I am a retired math teacher that is currently conducting daily research in the classroom.. with 5 severely autistic children. Due to the nature/communication skills a teacher has to get very creative to reach these kids. We've come up with some nice alternative teaching strategies that are producing results. Some kids are attacking basic skills while a standout is headed for hexadecimal multiplication. If I feel these techniques warrant some grant(s) who should I contact? We have to do our best on a daily basis regardless of a possible "cure". My own 17 year old is autistic and she teaches me daily as well by the minute. This research will benefit the k-6 elementary programs as well as the learning disabled. Thanks for any suggestions you might have on grants/educational research.
FRank Kahanec
Posted by: Frank Kahanec | September 27, 2008 at 08:16 PM
Tom, I found the reference that I was thinking of regarding concordance among twins. It is from an article by Martha R. Herbert, M.D., Ph.D., who is an assistant professor of neurology at Harvard Medical School, and a pediatric neurologist at the Massachusetts General Hospital in Boston and Cambridge Health Alliance Center for Child and Adolescent Development. The article, called "Time to Get a Grip" is excellent, and can be found at www.autism-society.org/site/DocServer/eh_get_a_grip.pdf?docID=4821.
Dr. Herbert says: "When we examine the frequently cited figure of a 90 percent ‘concordance rate’ among identical twins (meaning that if one twin is autistic, there is a 90 percent chance that the other one will also be autistic), we can see that it overstates the case. Among identical twins, there is a 90 percent chance that if one twin is fully autistic, the other will have some autistic features, but only a 60 percent chance that the second twin will be fully autistic. While some researchers tend to focus on the 60 percent to make a case for genetic predisposition, we need to explain the 40 percent as well. To explain this nonconcordance we need to think about not just genes, but also the environment. Moreover, we also need to explain recent reports of high concordance among dizygotic (fraternal) twins, which suggest environmental rather than genetic factors.
"We also know that the number of people diagnosed with autism has skyrocketed, both in the U.S. and in other countries. The current figures are running ten times higher than they were 15 or 20 years ago. The twin concordance data just discussed may not even apply to the new cases, since the studies were done before these increases were observed."
Posted by: Twyla | January 22, 2008 at 02:21 AM
Tom,
Can you explain then how the Carefirst (I think this is the name - home school clinic in IL) Clinic with 35,000 patients, has no cases of autism. Why do the Amish have, as far as we know, no autism issues, and the study done by Generation Rescue have such a difference in prevalence rate. It is no coincidence. There is no argument over the fact that there is a genetic component, but the epidemic was triggered by an environmental assault (i.e. vaccines). Of course identical twins have a higher than 90% prevalence, they share the same inability to process heavy metals and other toxic ingredients in vaccines. How can the environment not be the primary cause if it triggered this adverse reaction in our children? Autism rarely existed prior to the tripling of vaccines. You are putting the cart before the horse...the genetic susceptibility has always and will always be with us...what changed is the environment which makes it the primary cause. Of course the only way to prove it is to study the group that was not assaulted...something no one wants to do...hmmm, I wonder why?!
Sonja
Posted by: Sonja Lopez | January 21, 2008 at 05:38 PM
But Tom,
Why would a genetic condition increase so much over a 25 year period if there are not major environmental factors?
Why do some kids get so much better with biomedical treatments if autism is almost purely genetic?
I have read that the 90% concordance figure for identical twins is overstated, but I don't have the reasons why at my fingertips.
For some of the genetic variations that have been discovered (such as MET) there are many people walking around with that variation who don't have autism. It appears the variation may not in itself cause autism but can cause a predisposition -- perhaps a predisposition to injury from environmental toxins.
Some would point to the case of smoking and lung cancer. Many people who smoke don't get lung cancer. You could spend millions of dollars on research to figure out why smoking causes lung cancer in some but not in others. In the meantime, many people would be dying of cancer needlessly. The case of vaccines is different in that vaccines do have a health benefit whereas smoking does not. So it is easier to tell people, "Just stop smoking." Never-the-less, we should be comparing health outcomes in vaccinated and unvaccinated children and we should be placing more emphasis on weighing the risks of vaccines, not just assuming that the benefits outweigh any risks.
This is also a matter of listening to parental experiences and using these as the basis for study, instead of cavalierly ignoring the many many credible reports of children reacting adversely to vaccines and then regressing into autism. And this is a matter of many vested interests lining up to prevent the vaccine program from being questioned, because of financial considerations and fear of admitting to mistakes.
But, thank you for writing! There certainly is value in genetic reasearch, but we need other kinds of research as well. If certain people are more vulnerable to harm from mercury, for example, genes are only part of the story. Why not study mercury toxicity as well.
Posted by: Twyla | January 21, 2008 at 04:30 PM
I normally don't respond to these postings but I felt compelled to respond as the parent of a child with autism and a researcher in child psychopathology more generally, and autism, specifically.
Spending large sums of money on studying autism treatment not as useful when the exact disease process (neurobiology) of the condition is unknown. That is why scientific advisors fund this sort of research. Because thankfully, they spend their lives making it their business why studying fruit flies has direct relevance to autism neurobiology. As a parent, it sounds ludicrous to have the primary non-profit funding organization for my child's illness spending money on eye gaze or fruit flies, but as a professional I recognize that these studies are essential to understanding the causes of autism. Autism is the most highly heretible of all the major mental disorders. The concordance between monozygotic twins has been estimated to be >90%, while the concordance for dizygotic twins is much, much lower (approximately 10-15%) meaning that the vast majority of the reason for autism is genetic. These numbers leave very little room for the environment to be the primary cause of autism.
As we are learning recently through very well done studies of copy number variation, many of these genetic changes are new mutations that result in the duplication or more commonly deletion of genes responsible for important brain functions. Although we originally thought this copy number variations (or other similar genetic changes) were minor and only accounted for a small number of cases, we are learning that this was likely due to limited technology. So in a sense I agree that we need new innovative methodologies and studies. However, my new innovative methodologies and studies involve improving the detection of particular genetic changes and better identification of basic biochemical abnormalities in autism (by the way I am not a genetic researcher so I am essentially arguing against funding my area of research).
Once we understand the biological processes, which in the vast majority of cases are likely to be purely genetic causes, we can then seek more informed and helpful treatments. The current work on fragile X is a great example of this process. If we had spent hundreds of thousands of dollars studying drugs like risperdal or stimulant medications (such as those to treat ADHD) we may have found some minor improvements in the behavior of children with Fragile X but this money would have diverted funds from the key science that identifies the real pathophysiology of the disorder and then can offer informed treatments that are based upon cause not symptoms.
My two cents about funding priorities.
Tom
Posted by: Thomas W. Frazier | January 21, 2008 at 03:27 PM
I think we have been "talking the talk" for a while now. Its fairly easy to recognize the hecklers for they carry a vibe that well wishers don't. There is enough information out there, you just have to read it and then sustain it. Where do we get all our information from? From reading, and then it gets into our heads and stays there. We know it. We are not deliberately going out there to mess people up. All we want are some honest answers to perfectly legitimate questions. Now I don't think that is such a bad thing after all, is it?
Posted by: Enough is enough | January 21, 2008 at 02:43 PM
I like Katie’s article because she is not afraid to voice her criticism but she is also not afraid to voice her praise. I think it is important to remember that Autism Speaks is not monolithic, which Webster’s defines as “constituting a massive undifferentiated and often rigid whole”. Yes, the scientific board is apparently quite rigid. But there are so many people working for AS doing many different things. Keep in mind that Sallie Bernard is on the board of directors. AS merged with CAN, which funded Dr. Martha Herbert’s research. And AS has a growing “Autism Treatment Network” in which they are working to develop and track medical treatments for people with autism, addressing for example allergies and GI issues. Whether these treatment centers are doing things in an ideal way, I don’t know. But I do know that none of us have a monopoly on the truth. God has not come down from the heavens to hand anyone a stone slab engraved with the Truth About Autism.
There is definitely reason for anger and frustration. This organization which raises so much money should be funding research on mercury toxicity, vaccines, dietary intervention, detoxification, nutritional supplements, biochemical processes such as methylation… Yet I don’t think it serves a good purpose for us in the biomedical community to demonize Autism Speaks and develop a totally “us against them” mentality.
To the extent that we disagree with the AS science board, we should express ourselves in a professional manner in this public arena, and remember that AS is made up of a bunch of human beings with a variety of personalities and skills, many of whom are highly intelligent, conscientious people who are working very hard on what they believe to be the best ways to help people with autism and their families. I find myself wanting to quote Rodney King (that great prophet, j/k): “Can’t we all get along?” OK, meanwhile kids are dropping like flies from our out-of-control vaccine program, but still...
I see the Age of Autism web site as serving more than one purpose. This is a place for people who share similar views on the biomedical causes of autism to share information and opinions that are not currently covered by most media. But this should also be a place where people of differing opinions can engage in constructive discourse. This should be a place where people who don’t believe that vaccines cause harm could learn that there is in fact a lot of information supporting our concerns about vaccines. If we are hostile and disrespectful to those with different beliefs, they are sure to be turned off and alienated before listening and reading enough to learn something new.
I am not saying that all emotion should be repressed, but there is a line somewhere – a very gray line – between what is appropriate for this public venue and what is appropriate for a personal email in which we vent to our heart’s content. We should communicate in a respectful, thoughtful, articulate manner so that we best represent our side of the argument and we invite intelligent discourse.
I started writing this comment when Katie’s article was first posted. Then I received an e-newsletter from AS in which they reported on the study concluding that since autism cases have continued to rise even though thimerosal has supposedly been removed from most vaccines, thimerosal must not be a cause of autism. They did not question the conclusions of this study. I felt a flash of anger, and thought, why should I defend AS in any way?
Then I received this week’s AS e-newsletter which reported on a study of maternal autoantibodies. “The new study found antibodies in mothers' blood that targeted two specific proteins in fetal brain tissue. Seven out of 61 mothers of children with autism had antibodies to both proteins, whereas none of the mothers of developmentally-delayed or typically-developing children had both antibodies.”
The article went on to say:
“Connections between the immune system and autism have also been reported in two recent studies funded by Autism Speaks. Unlike the mother-focused study described above, these studies looked at children with autism for immune system abnormalities. Led by Paul Ashwood, Ph.D., also at UC Davis, scientists found that levels of an immune signaling protein called interleukin-23 (IL-23) was significantly different in blood samples from autistic children when compared to typically-developing children. This may ultimately impact brain inflammation because IL-23 promotes the survival of a type of lymphocyte that is involved in initiating inflammatory responses. The second study, also led by Dr. Ashwood, found that altered levels of brain-derived growth factor (BDNF) were produced by blood cells from children with autism, both at rest and in response to a simulated pathogen. Since BDNF promotes neuron survival and function, this finding suggests that immune responses could modulate neural function via the BDNF produced by these blood cells. These studies were published in a special autism issue of the American Journal of Biochemistry and Biotechnology.
”Investigations of the immune system in autism by these scientists and others will discover whether factors like antibodies and interleukins, perhaps in combination with genetic susceptibility, may influence brain development in a way that can lead to autism. These findings show how critical it is to pursue every research avenue, even unexpected ones like the immune system, to bring us closer to answers about autism.”
They did not make a connection between immune system disorder and over-vaccination of babies and children. In the first study, they seemed to be looking at how maternal antibodies may harm a fetus, but not at the possibility that a genetic propensity towards auto-immune issues may make a baby’s immune system more vulnerable to injury/disruption from vaccines. Still, this is interesting research.
Posted by: Twyla | January 21, 2008 at 01:11 PM
Dear Katie,
Please forgive me for saying this but Talk is Cheap. I praise you for being one of founding parents of AS and trying to help those with loved ones affected by Autism but Autism Speaks can only do so much with event walks and charities in the purpose to only promote awareness. If AS was only in it to find the genes responsible for the causation of Autism then you have lost more than just time. However, I sincerely believe everyone deserves a second chance. If AS is willing to take on the challenge to seriously and truthfully help families with loved ones affected by autism by taking on BIG PHARMA and taking a serious devoted study on other therapies Biomedic or other then COUNT ME IN!
Posted by: Elucidatus | January 11, 2008 at 05:50 PM
MANAGING EDITOR's NOTE: Chris, depending on the State you live in, you may have either medical or religious exemptions for vaccines. You might want to look into that and then talk to your pediatrician about your concerns.
Katie i need your advice and really don't know what to do here. My son is now 24 months hes getting about 15 hours a week from early intervention. But he due for his shots again(24month) but there telling me that if i don't give my sons shots he will be kicked out of play group and he will not be able to go to school what am i going to do here? My sons has made some very good progress but i really don't want to do anything that may harm him in any way. please help me out here?
Thanks
Chris
Posted by: Chris | January 10, 2008 at 11:32 PM
Here's my message to Autism Speaks - the only thing I can trust immunizations to do, is to make my child sick. No more. I am going to go to alternative medicine practitioners to make my sick child well again. They are the only ones who are capable of understanding and treating the damage mainstream medicine has done to my child. You can quit lying, saying the same lie over and over and over again does not make it true. I have had enough of the lies.
Posted by: Enough already | January 10, 2008 at 08:22 PM
JB-
Yes Yes Yes. The government agencies responsible for toxins in vaccines must be held to account.
Whoever causes one of these little ones to stumble, it would be better for him to have a heavy millstone hung around his neck, and to be drowned in the depth of the sea.
Unfortunately, I can't control how AS chooses to wield their influence. As long as they are not hostile to Biomed I won't boycott their walk.
But Bernie Marcus won't get my time or money until biomedical solutions are front and center.
Katie Wright has joined the ranks of organizations that actively support vaccines as a causal link. That makes me very optimistic. Slow to throw stones at the Wrights.
AS very much reminds me of the Susan B Koman Association.
In thirty years we will be able to credit them for awareness and that's about it.
Unfortunately I'm not sure the Wrights can single handedly redirect the AS vision. It is a big powerful, private, entity.
As for government agencies tho', we must continue to keep applying the pressure. Ultimately they work for us. They are a totally different animal.
Telling our kid's stories and demanding better use of taxpayer dollars is our right in a democratic society.
We do have control...the voting lever. At the CDC public comment and through media venues too.
We were vested, by default. We are the vaccinated damaged by vaccines.
We have a voice.
Some people say to me why do you bother to go to the CDC ACIP/Vaccine advisory committee meetings? It is a waste of time!
The last time I went, less than 1/2 the panel was present for public comment.
But I go and SAFEMINDS(who has gone to ACIP for years)goes because the day we stop showing up, they win.
Unfortunately our real battle ground is at the grassroots.
Often times we are on the defensive but as taxpayers we can revolt and expose the corruption and lies.
We can and should fight this corrupt system as consumers and tax payers - until the people who damaged our kids are debunked and no longer have a place of authority.
I do not expect that this fight will be over soon. I do not expect those who knowingly sanctioned Thimerosal in vaccines to admit it.
It took decades for good people to abolish slavery. It took good people like Wilbur Wilberforce to stand up against the sugar trade.
We have to stand.
Call me a Polly Anna, but I think at some point Autism will hit critical mass. Those who sanctioned over vaccinating with neuro-toxins will look like buffoons.
We should direct our efforts on what we can control as taxpayers.
Autism treatment, early intervention, and preventable causal links should be addressed this upcoming election year.
We should be that nagging gong that won't go away.
Despite the apparent sea of disinformation, I my phone still rings off the hook with parents requesting information on immunizations.
It tells me we are winning in the arena of public opinion.
No amount of data bending can eliminate the adaptive equipment that litters school hallways.
Our neighbors and friends watched my son's Mercury poisoning and stopped vaccinating without even a word of caution from me.
The epidemic is overshadowing the shallow spin.
The school has even tracked my son's obvious progress with Biomed and no longer deems me "the voodoo" Mom.
Now I am "progressive" and "cutting edge".
Change and enlightenment came slowly.
This gives me hope.
Along with the Generation Rescue kids we see transformed with diet and chelation recovering.
Hopefully JB, the court of public opinion will one day trump the governmental gridlock.
Maybe we can all work hard together for this to happen.
Lay aside our disagreements and forge ahead.
Posted by: Karen B | January 10, 2008 at 01:28 PM
Count me as one of those hopeful parents referenced by other commenters. (I would ask that people who are concerned definitely take a moment to familarize yourselves with Autism Speaks latest round of funding. You can do so here: http://www.autismspeaks.org/press/science_funded_december_2007.php
I am excited about the well-rounded nature of their research, the family services grants they are providing, the insurance legislation they are pushing and the general awareness they are generating. Katie, I know you are incredibly proud of the tireless efforts of your parents. Many, many families like mine take hope in what Autism Speaks is doing.
Posted by: Autismville | January 10, 2008 at 10:33 AM
Unfortunately, the catastrophe is not over. Most new parents are not Donald Trump, they may not know an affected person. They certainly did not host an Autism Speaks fundraiser on the Apprentice and will follow their pediatricians advice as I did. The new California data will be misinterpreted by MD's that the current schedule is safe. The Thimiserol data may need to be looked at differently. Thimiserol although toxic in and of itself needs to be looked at as an indicator of overall toxicity. Removing thimiserol was like removing one of several carcinogens from cigarette smoke and expecting the lung cancer rate to go down.
Posted by: Nelly Huppert MD | January 10, 2008 at 04:31 AM
I was recently dismissed from a pediatrian's office because I refused to vaccinate my son. No diagnosis yet, but seems to be on the spectrum. I just won't vaccinate knowing there are problems. How do you get around all the vaccination demands when they enter school? Please advise.
Posted by: Sandy | January 10, 2008 at 01:19 AM
This is the most refreshing article I have read about autism, EVER! The timing could not have been better, riding on the heals of the California's recent absolution of thimerasol. I don't need to get into the flaws of these "findings"...we already know about them. But in the eyes of the "unaffected" public, those of us with vaccine injured children were once again left to appear "desparate". I have a grandson who regressed into autism after a flu shot. He began to heal only with the institution of biomedical interventions, including chelation!!!! As his gut and immune system improved, learning followed. He is recovering nicely.
Katie, you are very courageous to stand by your parents while challenging AS's inept scientific advisors. You are correct to put the blame where it REALLY belongs. Many of us who have followed your fight for our children, became angry with your parents, Bob and Suzanne. We felt that they betrayed you and all of the individuals you were trying to help. But we have ALWAYS felt the ache in the hearts of your family! You have since redirected my resentment for them, as well as for AS as an organization. You have given me the hope that there will be critical changes within. Changes that will shed serious light on environmental causes of autism including vaccine ingredients, as well as honest, extensive research into biomedical therapies.
I believe that your statements will begin to bridge the gap and rebuild trust within the autism community. Our children need help and they need it NOW! Your words have just set the wheels in motion!
God Bless You!
-Trish
Posted by: Trish | January 10, 2008 at 12:57 AM
Katie, thank you so much for writing this piece for us. It helped me to realize that AS is made up of many parts - and people. We plan to continue to shine a light on the funding they approve, the scientists they hire and endorse and the programs they develop. If we don't see any benefit to families (outside of Mr. and Mrs. Fruit Fly and son) we'll be sure to share our opinions. We thank you for sharing yours.
KIM STAGLIANO
Managing Editor
Age of Autism
Posted by: Stagmom | January 09, 2008 at 07:59 PM
It's a real pleasure to publish this piece -- and it couldn't come at a better moment. The media this week has prattled on about more (useless) gene studies and why neurotoxic mercury in vaccines couldn't possibly have anything to do with creating a generation of sick kids. We can only hope that AS takes Katie's words to heart and helps bring the truth to light.
Posted by: Dan Olmsted | January 09, 2008 at 07:50 PM
Karen B.:
Unfortunately, it's not just that these researchers "are from a generation scared to death by polio and other infectious disease, vaccines were intended to cure."
It's much more complicated than that.
Many of these researchers have staked their careers on refuting the positions many of us hold. On the AS SAB are people who have defended vaccines, claimed there is no autism epidemic, claimed that biomedical intervention is snake oil -- the list goes on!!
As a general rule, human beings do not implicate themselves and cut off their own heads and we shouldn't expect that to happen here. Unless AS blows up the current SAB and brings in researchers like Martha Herbert who are open to ANY avenue that might help our kids, nothing will change.
Just like CDC. What Federal Agency has ever cut off their own head? Nothing will happen without force from the outside because no one is going to say "I was dead wrong, my career is ruined, I'm a jerk, but I'm finally putting the kids first." It just won't happen that way!!!!!!
JB
Posted by: JB Handley | January 09, 2008 at 05:38 PM
Katie, Thank you for your thoughtful comments.
I was working a booth at the Atlanta AS walk where thousands turned out to walk for Autism. We were able to distribute literature that many biomedical organizations provided. ARI sent hundreds of Biomedical DVDs and we counseled parents in our tent on diet, therapy and even chelation uncensored.
While I do not know where the millions pledged that day went, I do know that several hundred parents were given access to Biomedical information.
Thank you for being so outspoken on your son's treatment and forging ahead.
We often forget the money and politics involved with scientific research.
Most of the researchers and pundits are from a generation scared to death by polio and other infectious disease, vaccines were intended to cure.
It is often a long hard political battle to even shine a light on Autism awareness, much less a cause.
I'm convince we have to learn to work with each other where we can.
It's Moms like you that will change the current "genetic only" line of thought.
I used to belabor with people about vaccines and Autism, only to be shot down, until he began to recover with chelation.
What you are doing to help your son - speaks. Loud and clear.
Please keep up the good work.
Posted by: Karen B | January 09, 2008 at 05:13 PM
As a former nurse who used to administer vaccines, I now, after having a son with autism and doing years of independent research, whole-heartedly believe that the ingredients in vaccines are a complete assault on the human body. We have done so much DNA swapping with animals and human aborted fetal cells that our genes are now much like one large cesspool. I no longer believe that the people of our country are even capable of procreating a baby with a strong, unadulterated immune system anymore.
Mercury, though being the most toxic ingredient in vaccines, is surely not the only poison in them, by any stretch of the imagination.
I think we have our long-term study. Look at the condition of our youngest generations. What has been done in this country is more evil than the countries that perform outright genocidal murder. Our sins are under the cover "what is best for your child".
Big Pharma controls the government (and media), and government controls the medical organizations that tell you what is best. As long as this is the chain of command, meaningful studies by doctors and scientists who suspect vaccines causal role, will never be done, or if done, will ever see the fair light of day.
I love my country, but I fear my government. And I believe, now and in generations to come, our children will never be as they once were.
God help us.
Joanne Antonetti
joanneantonetti@yahoo.com
Posted by: Joanne Antonetti | January 09, 2008 at 01:53 PM
So from someone "in the know" far more than we are- when to you see the AS ship changing course & helping in the ways you describe, and the ways we are all hoping for? Is there anything for us to do as parents to hasten this sea change, or do just continue to watch & wait?
Blessings to you.
Posted by: Carrie Elsass | January 09, 2008 at 12:57 PM
Great job Katie!!
:o)
-michele
Posted by: Michele | January 09, 2008 at 12:19 PM
Thank you for writing about Autism Speaks, and for promoting breakthroughs in public attitudes toward vaccine-injured children. I cannot understand why children in need of medical care are instead "wished away" by so many otherwise intelligent people. It's painful to realize that future generations will scratch their heads in wonderment that such an obvious scientific problem with great potential for solution was mired in denial for what is now going on decades.
Posted by: nhokkanen | January 09, 2008 at 10:49 AM
As a father of a 10 year old with Autism, I agree 100%. We have had good success with our DAN doctor, which also included a 4 month spiral down, but this is where we are seeing results. I would also like to see Autism Speaks try and spend some on their money on Grass Roots programs. Thanks Katie.
Posted by: Michael Sweeney | January 09, 2008 at 10:16 AM
What got my immediate attention was this sentence:
"There is no more time to waste. We are in the midst of a catastrophe and must be unafraid in pursuit of answers."
For several days I've been watching news videos and reading reports about the CA numbers. Reporters eagerly tell us that kids are still being diagnosed with autism in CA, yet with absolutely no sense of what a disaster this is. The main thrust of the news is that it's more proof that vaccines with toxic mercury don't cause autism. They provide no other answers however. IF IT ISN'T THE MERCURY, THEN WHAT IS IT? No one is sounding an alarm over a debilitating disorder practically unknown in the adult population. It was such a change to read the word, "catastrophe" in an article on autism. Thank you Katie Wright.
Posted by: Anne Dachel | January 09, 2008 at 09:54 AM
Perhaps Katie can do something about the Autism Speaks forums too and curtail the infestation of neurodiverse propagandists who will do anything they can to prevent autism from being cured.
Posted by: John Best | January 09, 2008 at 09:49 AM
Katie -
Thank you for writing this post! It is articulate and provides an in-depth look at Autism Speaks. We appreciate you beyond words.
Whats interesting, in 2005, we were all excited about AS coming on board to find solutions. Like JB, I was chanting "THIS IS IT." All in anticipation of something big to change for everyone - especially our kids!!
But somehow things got stalled. The wrong folks got in power at AS and it shows in their research funding patterns. Hope is a strong word - I usually save that for the kids. But I hope that reason and reason science take over in place on the previous SAC objectives of status quo. I hope that people will listen to voices of concerned parents and make some choices that could yield amazing results to help hundreds of thousands of kids and their families. I hope. (I don't use that word lightly.)
God bless you Katie! Keep talking -
Posted by: Lisa | January 09, 2008 at 09:19 AM
Just for those that may not know I started The Autism Autoimmunity Project in 1998 after leaving Cure Autism Now (CAN)because they told me on the parent email list to be quiet about criticism of Merck. They said they wanted to get funding from Merck and other drug companies.
At one time they had Vijendra Singh along with Hugh Fudenberg and Sudhir Gupta on their scientific board but replaced them. Portia Iversen who was the Founder of CAN talked regularly to Vijendra but then didn't.
With the Autism Autoimmunity Project from 1998 to 2005 we raised over $130,000.00 for the research of Dr. Singh along with Andrew Wakefield and James Oleske of UMDNJ. The Autism Autoimmunity Project was involved with the NJ Governor's Council on Autism and we managed to get only $50,000.00 for the research of James Oleske (Immunology Dept of UMDNJ) but COSAC, NAAR and CAN fought us every step of the way after we got the $50,000.00 in 2000. Emanuel DiCicco Bloom of Autism Speaks basically controls the Council now on who gets funding.....nothing for immunology or the vaccine link to autism.
Since the Autism Autoimmunity Project is no longer in existence because of the financial situation, I started Vaccine Autoimmune Project with Barbara and Butch Labrecque. Our son, Eric is an adult and recently a parent who was 55 years old told us that their 24 year old son with autism had seizures and was choking them and they needed placement for him (like our son who is in an out of state residential center).
I read what Dr. Buckley said to Dan Olmsted on the Age of Autism article regarding the USA slipping from being a superpower because of the autism epidemic.
Count on it!!!! When it happens is anybody's guess but it will happen.
Raymond Gallup
highnoon@gti.net
Posted by: Raymond Gallup | January 09, 2008 at 09:00 AM
Dear Katie
Thank you for this intelligent, well-presented, well-argued and clear article which "speaks" to the strengths of Autism Speaks and yet expains why so many of us are so frustrated with the organization's scientific approach. When my son with autism was much younger I remember hearing about fruit-fly-like studies and thinking "this will never be cured in time to help my kid." Nowadays, I think it just may be. But it's not because of studies like the ones being funded by Autism Speaks, It IS due to all the scientists, physicians and funders who are brave and creative enough to think outside the medical establishment box, as this epidemic rages: Those who understand that we do, indeed, have an emergency before us.
Might I suggest that we all print out this article, carry it in our wallets and present it whenever sometimes confused "civilians" ask, as they often do, perfectly legitimate questions about all the different theories and approaches concerning autism today? We should show it, also, to all the young parents of typical children who ask us whether or not to vaccinate their kids. An article like this clears the smoke and leads the way so that those young parents can make their own well-informed decisions.
Katie, thank you yet again.
Barbara Fischkin
Posted by: Barbara Fischkin | January 09, 2008 at 08:51 AM