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99 posts categorized "Katie Wright"

Katie Wright on IACC Vs. GAO Report

Thank youManaging Editor's Note:  We ran this post from Katie in March, but are bringing it back to help readers understand the work of Dr. Tom Insel and IACC over the years. Katie has attended the IACC meetings and taken close note of the lack of action on behalf of our loved ones. 

Rep. Darrell Issa, Chair of the House Committee on Oversight and Government Reform announced a hearing of the Government Operations Subcommittee on the subject of the Examining the Federal Response to Autism Spectrum Disorders.     

The hearing will be held in at 9 am EDT today in 2247 Rayburn House Office Building, Tuesday, May 20, 2014.

Watch via live streaming at http://oversight.house.gov/hearings/

By Katie Wright

I want to thank the perceptive and hard-working Congressional staffers who wrote the Government Accountability Office’s report on autism research. The GAO report is similar to the work of the IACC support staff: the record keeping is excellent the portfolio analysis, the publications analysis exceptionally well done. If only the actual NIH autism grants were half this good….

The GAO report is comprehensive, well researched and, perhaps, most importantly of all, truly representative of the interests and concerns of American families affected by autism. It is also worth noting that the correct, most judiciously spent, portfolio of autism research is in the best interest of every taxpayer.

Democracy is a beautiful thing.  Unlike the Soviet style leadership appointments for life at the NIH and the CDC, elected representatives are accountable to consumers. They take our calls and respond to our concerns. If they do not perform well, representatives lose their jobs! That is certainly NOT how things work with the NIH leadership.

Continue reading "Katie Wright on IACC Vs. GAO Report " »

OnioNew York Times: A Medical News Parody

Gianna laughingManaging Editor's Note:  I laughed like heck when I read these Rotten onionOnionesque parody excerpts by Katie about the New York Times and its atrocious coverage of autism. Feel free to create your own and submit it to our comments.  Keep 'em clean! We'll choose a winner and you will get... hmm, an onion? (That's my Gianna laughing in the photo.)

By Katie Wright

SARS Epidemic Waiting to Hit the USA!
Do you sleep with waterfowl in your home? You will soon DIE of SARS! Join vaccine trials now! By, Anahad O’Donnor

 “New York Times” Editorial by Gardiner Darris

ALL Americans must be forced to buy Paul Offit’s products or have their citizenship revoked! To parents of vaccine injured children -shut up! Don’t you know Vaccines Save LIVES! If you dare to question the sanctity of vaccines or speak about an adverse reactions other children WILL die and epidemics will return! Just to be clear no adverse vaccine reactions will NEVER be discussed in this newspaper, “The New York Times,”  because Vaccines Save Lives! If over-vaccination ruins a life, that is too bad, those people don’t matter, because Vaccine Save Lives!

H1N1 PANDEMIC – We are all going to DIE, every person on earth, unless vaccinated- right NOW! By. Benedict Larey
1 in 68 American children now autistic. Parents groups are “scared” for NO reason!  It the parents vs. the Research” By, Ananad  D’Connor

The NYT Sunday Review, by Dr. Sam Wang

“Don’t Worry Be Happy= No Autism!” It’s not a disease, just stress! Listen, get over it 1 in 68 kids having autism is no big deal!

Continue reading "OnioNew York Times: A Medical News Parody" »

Amy Wallace, Get Over Yourself

Wahmbulance_jpg_650x10000_q85By Katie Wright

Recently journalist Amy Wallace wrote an op-ed piece for “The New York Times” about how she was deeply offended by those who have publicly disagreed with her articles on autism. Wallace basically labels likens all criticism and (yes, it can be very tasteless) cartoon-like renderings to a sex crime.

Before autism took over my life I worked with survivors of rape and incest. They inspired me every day. I have known many survivors of sexual assaults and sexual discrimination. I have worked with many survivors of sexual assaults and sexual discrimination. Amy Wallace, you are not a victim of a sexual assault or sexual discrimination via the Internet.

To waste one’s time feeling sorry for oneself because of what strangers and trolls say about you on the Internet is sad. Yet then again, maybe I am envious? I am talking to all you autism parents out there; imagine if tasteless cartoons were your biggest problem in life? How nice that would be, right?

Ms. Wallace very much perceives herself as a victim of autism as well as her pal Dr. Paul Offit.  Indeed, some people say mean things about Dr. Offit online. I know, it must be hell on earth! However, Ms. Wallace describes Dr. Offit’s lovely Tudor house, notes there are 2 very nice cars in the garage. Dr. Offit has a caring, successful professional wife and two bright, healthy children. Oh and he has made over $10 million on his vaccine patents. Wow, what a victim … it is a wonder how he goes on living!

Amy Wallace is apoplectic that critics render her as Paul Offit’s stooge (to quote Wallace: Offit is, “so quick-witted and funny!”) in obviously Photoshopped pictures. Yes the pictures are crude, but really Ms. Wallace, time to grow up. No one said the First Amendment is always pretty but it is essential to a free press. You should know this as a professional journalist. Time to stop feeling sorry for yourself and put on those big girl pants!

Continue reading "Amy Wallace, Get Over Yourself" »

Katie Wright on Autism Speaks' Science Department: A Year in Review

GroundhogdayBy Katie Wright

 Part 1

Almost a year ago Dr. Rob Ring became Autism Speaks new Chief Scientific Officer. I was told that this would be a new era at AS science. Dr. Ring would be introducing more innovative, original research, reducing the amount of learn the signs studies and prioritizing underserved, severely affected people, biomedical interventions and meaningful here and now treatment for all. Sounds good right?

Well first the good news. AS funded an excellent  $120,000 study on wandering prevention and another really terrific study on vocational training for young ASD adults. Earlier this year, thanks the very dedicated work of an AS board member, AS also funded a highly innovative study on  $100,000 study on PANDAS. .

I allowed the entire year of 2013 to pass without any public comment because I wanted to give Dr. Ring the opportunity to follow through with his proposed reforms. However, we are now eight months into Dr. Ring’s tenure, looking at the most recent slate of grants, the third grant cycle under Dr. Ring’s authority. These grants are largely disappointing and so painfully conservative in nature that I cannot remain silent. I have tried, very hard, behind the scenes, for years, to lobby for better research. No one at AS science is listening. Our ASD children and young adults deserve so much better.

In 2013 virtually ALL the Weatherstone Predoctoral Fellowships were either genetic, early intervention or brain imaging in nature. It is my understanding that Weatherstone was intended to draw innovative young investigators into the field of autism, with special emphasis on the GAP areas in ASD research.  AS has saturated the field early intervention and learn the signs research with money. There is absolutely no need to continue to subsidize growth in this area. To a large degree the same problem applies towards the fields of genetics and brain imaging.

Imagine if the NIH were to subsidize more research into the dangers of smoking cigarettes, which is what is happening here.

There are already 1,295 studies on autism and brain imaging/ fMRI and at least 1,000 more in the pipeline. Simons, Cold Springs Harbor and the NIH are MORE than happy to fund this area of research, AS needs to move on.  Brain imaging is all about looking at brain inflammation, we need to know what environmental triggers are CAUSING this to happen. There are over 5,000 published studies on autism and genetics. Naturally some genetics research is indeed valuable but why are most AS grants still genetic in nature? Dr Ring knows this is NOT what AS families want.  There are 11,000 published studies on the signs of autism. That is e-n-o-u-g-h; there are over 6,000 studies on early intervention. Additionally there are p-l-e-n-t-y of geneticists and brain imagers in the field or autism research. Weatherstone should be subsidizing predoctoral students in the biomedical and environmental sciences fields, neglected by AS and the NIH. Weatherstone could also be supporting researchers to study the biological functions of autism via GI, autoimmune and food allergies.  How refreshing that would be!

Let’s take a look a the biggest Autism Speaks grants of 2013:

1) Preclinical Autism Consortium for Therapeutics (CA)                         $715,000

These consortiums appear to be a Two MILLION DOLLAR check to geneticists towards mystery drug development. Typically these studies research “core issues” (behavioral aspects- not total body autism) of autism. We cannot afford to go down the same avenues over and over again. We already tried this. AS spent 5 MILLION DOLLARS on the Fragile X /Seaside Therapeutics drug. The drug certainly helped those with Fragile X but not that the other 95% of people with autism. These rare chromosomal disorders are such a different animal; they do not translate to typical autism. Dr. Crawley mainly does genetic and behavioral research.

2) Preclinical Autism Consortium for Therapeutics (TX)                         $615,000

Dr. Paylor, the fundee is a genetics researcher and specializes in, you guessed it, Fragile X. There are 837 published studies on autism and Fragile X and probably 500 more in the pipeline.

3) Preclinical Autism Consortium for Therapeutics (MA)                        $600,000

Dr. Sahin is a genetics researcher and specializes in, naturally, Retts Syndrome and Tuberous Sclerosis research. FYI there are a total 1,070 published studies on autism / TS and Retts.

The idea that these 2 million dollar (and that is just phase 1!) genetics consortiums will lead to the creation of AS drugs is a great idea in theory, but in practice this project is a huge luxury we cannot afford.   Hasn’t the Alzehimers community spent billions doing this, with no success? Too many people with ASD are suffering terribly today and we cannot and should not ask them to wait a dozen years for potential treatment drug when we have so many unstudied autism treatment options are ready to be researched right NOW.

AS could be testing the dozen or so drugs/ medicines currently in off label use in the ASD community right now! Do a clinical study into Pentasa an anti-inflammatory for GI disease- today! Do a TSO study on people with severe GI problems- today! Do a decent dietary intervention diet research towards the reduction of hyperactivity, project today! Do an IVIG project on severely immunocomprised ASD people- today! Do a TMS study on those with HF autism now!

4) Which placement for which child in urban early intervention?         $447,000

Ok, I think we all know the answer to this one: the best available early intervention. There is no mystery here. The problem is $ and resources. There are 6,000 studies on the importance of early intervention. Children in urban areas need the same early intervention as children elsewhere. There is not an “urban autism.” Urban ASD children are indeed an underserved but the problem is political will and resources, not a lack of early intervention research.

5) Risk Evaluations for Latinos                                                                   300,000

On the face of this grant looks good but the fundee is: Dr. Eric Fombonne. OK, my immediate thought is, again: “Is AS science out of their mind?” In the not too distant past, Fombonne was charged with unethically acquiring AGRE parent data for an unauthorized study. Yet, Fombonne is rewarded with a huge $300,000 research project? Dr. Fombonne has long been on the record that there is no autism epidemic, no real rise at all. Additionally, Fombonne testifies, for money, against disabled children in vaccine court.  What a guy, right?

Continue reading "Katie Wright on Autism Speaks' Science Department: A Year in Review" »

For Payam: IACC Comments Make Tom Insel Squirm

Thomas inselBy Katie Wright
               
IACC 9/13

18 years ago Albert Enayati’s son, Payam was a happy, healthy well-adjusted toddler learning English as well as his parents’ native Farsi. Payam had reached or exceeded all age appropriate toddler milestones. However, after a series of childhood vaccines, most of which contained an excessive amount of mercury, Payam rapidly regressed into severe autism. Payam lost all his language and all his skills. As a result Albert became a pioneering autism advocate, involved in the inception of both SAFEMINDS and Cure Autism Now.

I want to draw attention to hour 4:05 on the IACC video cast Albert Enayati shows at IACC. Please view it. It is an incredibly compelling video of Payam today. Payam is yelling and hits this head with a closed fist so continually and ferociously that he has bald spots on his scalp. The family had to split up into 2 houses because of Payam’s unpredictable violence. Yes, Payam received early intervention ABA and speech but to no avail, behavioral interventions do not reverse mercury poisoning.

In 2011 the National Vaccine Advisory Committee recommended that the NIH study adjuvants and the vaccine schedule as they are administered. The IACC committee then voted to put vaccine research into the NIH autism research Strategic Plan. This proposed study would have amount to less than .01% of autism research monies. However, at the following IACC meeting, with no discussion or debate, Dr. Insel suddenly and unilaterally vetoed the committee vote. Albert asked Dr. Insel why he has blocked this research. It is a perfectly reasonable question.

Insel lost his typically cool persona and became visibly agitated as he claimed to have no power to decide what kind of autism research gets funded. Sorry Dr. Insel you cannot have it both ways, you unilaterally overturned a full and fair IACC committee vote, YET you no have no power to make research commendations? Good luck selling that argument.

Dr. Insel is easily the MOST powerful person regarding autism research at the NIH. He has chaired the Inter Agency Autism Coordinating Committee for over decade. I do not think that his boss NIH Director Francis Collins has sat through even 1 meeting IACC. Dr. Collins told us himself at an autism community meeting that he relies on Dr. Insel that they speak often about IACC and autism. So I think Dr. Insel is able to make p-l-e-n-t-y of recommendations.

Albert was asking why Dr. Insel overturned the committee’s recommendations yet Insel totally refused to answer the question. Just because one is an unelected bureaucrat does not mean one is unaccountable to the public. It was a reasonable question that Insel should be compelled to answer.
Instead of answering Albert’s question Insel starting scolding Albert as if he were the bad guy in all of this. The absence of empathy I have witnessed time and time again towards parents like Albert and children like Payam never fails to astonish me. How could a doctor not be moved to action, moved to help, moved to DO something to help severely affected people with autism after seeing the devastating video of Payam? How is that none of the federal representatives, people who have power to help the Payams in the world, did nothing, said nothing to Albert? How is it that no one even asked a question about Payam?

Continue reading "For Payam: IACC Comments Make Tom Insel Squirm" »

Katie Wright On IACC: Buie Educates, Wachtel Shocks

ECTBy Katie Wright

Dr. Tim Buie gave an incredible and impassioned presentation on the pervasiveness and severity of GI disorders among the ASD population. Buie provided devastating video footage of young ASD adults with pre GI treatment engaging in aggressive and self-injurious behavior. He spoke about how vastly under diagnosed this problem is and how the manifestations of pain are largely treated as troublesome behaviors, treated with anti-psychotics. Over and over Buie detailed classic signs of GI pain in the severely affected and minimally verbal ASD population:

1)    Strange posturing, laying on table and chairs
2)    Self injurious behavior
3)    Aggressive behavior, biting and scratching
4)    Food refusal
5)    The obvious: constipation and diarrhea

Buie estimated that over 50% of ASD children have GI disorders yet only small percentages actually receive treatment. Even today as the AAP accepts that GI disease among ASD children is real, most pediatricians and pediatric GIs do cannot recognize the signs of GI pain nor correctly diagnose the problem.

Immediately afterwards Dr. Buie Dr. Lee Wachtel of Kennedy Kreiger gave a talk that was as bizarre as it was disturbing. Watchel theorizes that a number of symptoms commonly found in ASD people are actually a psychiatric disorder called “catatonia.”

What are the symptoms of catatonia?

1)    Strange posturing
2)    Self injurious behavior
3)    Food refusal
4)    Constipation

Guess what the treatment for “catatonia” is? ECT -ElectroConvulsive Therapy. (Yup, shock treatment.)

I mean really, the woman was sitting through Buie’s presentation but is so determined to proceed with her wacky theories and barbaric treatment she just blocked it all out?

Kennedy Krieger’s autism unit is entirely psychiatric. No GI experts, no immunological clinicians, and no discussion of possible celiac or debilitating food allergies, nothing about regression…..It is all in your head, baby.

Continue reading "Katie Wright On IACC: Buie Educates, Wachtel Shocks" »

People Who Get #$%& Done

SwearingBy Katie Wright

You know people who can really get #$% done?

People who are organized, efficient and do not tolerate obstacles in their path?

The kind of people who set seemingly crazy high goals and then actually follow through and achieve them?

Well I am not one of them and I suspect neither are all of you. That is OK!  Listen we all have our own strengths.  If I can make sure Christian gets his GABA and 5HTP before bed I am at the top of my game.

At AutismOne we saw incredible ASD parents Jen VandDerHorst and Mark Blaxill getting some amazing $#%^ done.

Jen is the proud mother of an extremely hard working, severely affected young boy with autism. Jen has her own business, which needless to say is a full time job. In her spare time, Jen co-founded an autism treatment center for ASD kids in MN as well as co-founding our beloved Canary Party. In her spare, spare time Jen has worked tirelessly to establish relationships between the autism community and congressional leaders. On behalf of the Canary Party Jen traveled all over the country (again in her “spare” time and with her own $) meeting congresspeople and spending time with their staffs.

Mark Blaxill has two lovely young adult daughters, the younger of whom has autism. Mark co-founded SafeMinds and the Canary Party. Mark has spent his career as a very successful business management consultant. In his “spare” time Mark traveled the country researching and writing his seminal book, co authored with Dan Olmsted, “Age of Autism.” Like Jen, Mark does a great deal of government advocacy at IACC our behalf. In his spare, spare time Mark works tirelessly behind the scenes reading and decoding all autism research literature, and I mean all of it. Mark traveled extensively (with his own $, naturally) while persuading Congressional leaders to come to AutismOne meet our families.

Continue reading "People Who Get #$%& Done" »

Katie Wright and Michele Iallonardi Broaden Scope of Katie Couric Autism Episode

Michele I
The Iallonardi family.
Managing Editor's Note:  Our contributing editor Katie Wright wrote a post
KatieWrightBlog_630-300x300
Katie Wright and her sons.
for the Katie Couric talkshow which airs today and features autism. It seems that the children/people with autism chosen to appear on camera do not represent many of our readers' own children.  Katie Wright does a great job of pointing out the vast differences under the name "autism" in her blog entry that is on the Couric site (see below.)  Also,  our friend Michele Iallonardi herself Mom to three beautiful boys, 2 with autism and 1 who is recovered, has a blog entry that also presents a written juxtapostion to what viewers will see.

You might recall Michele from the movie Autism Every Day, which came out many years ago. She is also in the new movie United States of Autism. Michelle is always a strong voice for families - and a realistic voice of the day to day challenges we face.  Check your local listings for air time.  

By Katie Wright

Watching the boys and adults affected with autism tape the Katie episode about autism was so inspiring to me. These are amazing, articulate, gifted and artistic young men. I loved hearing everything they had to say and learning how their parents dedicated their lives to facilitating their child’s success.

Christian cannot be interviewed on talk shows because he cannot speak.

As I was watching the show, however, I couldn’t help but be reminded of the huge disparity that makes up the autism spectrum. My son lives on the other side, the severely affected side of the spectrum. I am so proud of my 11-year-old son Christian – no one works harder (my opinion as his Mom!). However, Christian is not a savant, not a professor, not an artist, but just a typical kid struggling with severe autism. He was toilet-trained at age nine and needs 24-hour-a-day supervision because he has no awareness of danger. More to the point, Christian cannot be interviewed on talk shows because he cannot speak.

When people discover my son is severely affected they often ask if he received early intervention. Yes! So to all those parents who did the same, you are not alone! We spent our entire savings on the best intervention possible. The problem was that his untreated biological issues made cognitive progress impossible for many years. I believe this is because he has “total body” autism, not a behavioral disorder. Additionally, kids like mine have complicated gastrointestinal and immunological problems, which is, unfortunately, fairly common...  Read the full post at Katie Couric's site.

By Michele Iallonardi

As a parent of a child with autism, I am always interested in hearing about the experiences of others in my shoes. Very often, the stories that most people know about are those who have made amazing strides and had incredible success despite their disability. As a Board Member of the Nassau/Suffolk Chapter of the Autism Society of America, I have met hundreds of families affected by autism, and I know firsthand the struggles that they face each day. As my son gets older, I have thought more about how the world perceives children with autism who are severely affected. When I look at my own son, my friend’s children, and many of the children in our autism community, our stories are very different than the ones who usually garner the most attention. I worry constantly about their future.

Continue reading "Katie Wright and Michele Iallonardi Broaden Scope of Katie Couric Autism Episode" »

Nancy Snyderman's Latest Panic: It's a Cin-namon.

CinnamonBy Katie Wright

According to the new issue of “Pediatrics” there is a terrifying new health crisis gripping American teens: “The Cinnamon Challenge!” Thank God for Dr. Nancy Synderman for alerting parents like me of this pediatric crisis sweeping the nation.

Cue the ominous music! The Synderman segment on “The Today Show,” began with Dr. Nancy “sounding the alarm on the Cinnamon Challenge!” Evidently some dim-witted teens are uploading videos onto the Internet of themselves trying to swallow a tablespoon of cinnamon. Apparently, according to Dr. Nancy, ingesting large amounts of cinnamon CAN be dangerous.




You are very welcome. I know how many parents out there are there are so grateful to me for sharing Dr. Nancy’s message. That’s right, swallowing large amounts of cinnamon (and maybe paprika and coriander too!) is dangerous. If you are doing this STOP! You are setting a bad example for your impressionable teens! Consider putting a lock on your spice drawer. It is up to you to protect your family and potentially save your child’s life!

The Dr. Synderman segment cut to petrifying video of coughing cinnamon covered teens. It may not be appropriate footage for all to see, so you are forewarned. Synderman informs us that the true danger of “The Cinnamon Challenge” is that the ingestion of cinnamon triggers a gag reflex. This phenomena is artfully illustrated in a video of a coughing teen spewing cinnamon all over his clothes shouting, “Oh my God!” Oh my God indeed! Then- yes it gets worse- there is footage and audio of an ambulance blaring down the street, supposedly taking this cinnamon injured teen to the hospital. I only hope this boy survives…

Dr. Nancy interviewed a pediatrics professor  who informed the viewer that the “Cinnamon Challenge” is on the rise and has serious consequences. The pediatrician warns us that the “Cinnamon Challenge” can lead to inflammation and pain! Hmmmm…inflammation and pain….where have I heard that before? My son’s autism is a direct result of brain and body inflammation, which causes tremendous pain…but Dr. Nancy doesn’t report on that….and I have yet to see one “Pediatrics” article which really addresses the kind of brain and body inflammation autism which affects a million kids.

Continue reading "Nancy Snyderman's Latest Panic: It's a Cin-namon." »

IACC: Lots of Redundancy, Little Innovation

Serenity-prayerBy Katie Wright

The Serenity Prayer isn’t just for AA meetings anymore. I find it to be a useful calming exercise while listening to an Inter Agency Autism Committee Meeting. It helps me not want to jump off a bridge.

Almost no IACC members (who were not compelled by law) attended, or apparently listened to the first Congressional Government Accountability meeting on autism since 2001. Apparently Dr. Insel’s policy to ignore the outside world and all public input continues in earnest. At the hearing Congressmen and women spoke, at great length, about their frustration over NIH and CDC failures, specifically the absence of vaccine safety research on our immunization schedule and the association between vaccination and autistic regression. Congressperson after congressperson spoke with incomprehension over the fact we have the world’s most aggressive, infant immunization schedule yet among the sickest children in the industrialized world.

An amazing thing happens in a democracy: commonsense has a voice. Good questions are actually asked and bureaucrats, like Dr. Coleen Boyle and Dr. Alan Guttmacher, are required to answer! This is how life should be.

OK so let’s review, Congress held a full day hearing on autism research, featuring incredible bipartisan leadership, noteworthy in and of itself! Meanwhile in the hermetically sealed world of Dr. Insel and most IACC members there has been NO news, no discussion of this historic hearing whatsoever. Lyn Redwood attempted to insert discussion of new vaccine studies as discussed in this ground breaking public congressional hearing, into the Strategic Plan. However, Insel refused to amend the banal 5 year old, 3-sentence commentary on the state of autism and vaccine science.

The NIH wanted public IACC members who were as opposed to vaccine research as humanly possible.

I am still unclear whom Matt Carey represents and to what capacity he serves the autism community? He is a blogger yes, but for a British site? Does he provide services to ASD families? Does he fund research or educational conferences? Does he train First Responders to work with ASD families?  Four super HF Asperger's or HF autism men were appointed to IACC. This is odd considering that these brilliant and accomplished men represent about 2% of the ASD community. Indeed, given the new autism guidelines in the DSM, I doubt any of them would be labeled as “autistic” today.

Continue reading "IACC: Lots of Redundancy, Little Innovation" »

Katie Wright on IACC. Zero. Point. Zero.


By Katie Wright

OK, last IACC meeting of the year (rescheduled because of Hurricane Sandy.) Where to begin? Where to begin?

I just have to go with the CDC and the Somali study.

In 2008 The “Minneapolis Star” reported that there was an explosion of autism among Somali children. Indeed they cited preliminary data of 360 per 10,000 or 1 in 28 Somali kids in Minneapolis have autism. That is 5x the national rate! Astounding right? One would think that the CDC and the NIEHS would find this information compelling and immediately prepare to study the causes of this ASD cluster.

But no.

When there is an E. coli food poisoning cluster the CDC positively springs into action, leaving no stone unturned until they find the cause. The CDC immediately maps out a strategy, holds daily press conferences, and travels by helicopter to and from potential sources of the infections.

Even when there isn’t really isn’t an urgent public health crisis the CDC can be fast on their feet. Remember the avian flu outbreak in Asia? Again the CDC launched into action putting an emergency team together, sparing no expense. We all knew then and we know now that it is impossible for a human to catch avian flu unless a person literally slathers themselves in bird feces. Yet still the CDC found the money for a brand new avian flu wing in the CDC building.

However, when there is a gigantic and sudden explosion of autism in a major American city the CDC does nothing.  That’s right, n-o-t-h-i-n-g. The CDC did want not to count the Somali autistic kids in the Minneapolis and they surely do not want to find the cause of the autism cluster.

OK, let’s go back to 2008. The Minneapolis Dept of Health and then Senator Norm Coleman, the Somali families and the entire autism community were urging the CDC to investigate the causes of the autism cluster. Guess what the CDC does? Nothing.

Continue reading "Katie Wright on IACC. Zero. Point. Zero." »

Katie Wright on the IOM Vaccine Report

Vax for dummiesBy Katie Wright

Vaccines are the most effective and safe health care interventions in history. OK listen up dummies. Thanks to all those exasperating parents who dare to question vaccine safety the IOM has released a thorough and objective report on the safety of childhood immunizations.

Vaccines are the greatest health breakthrough of the 20th century. In order to ensure the objectivity of this report the IOM committee excluded all parents of any child injured by vaccines, as well as all experts in pediatric toxicology and environmental science in general.  Relieved right? The committee members, instead, included: experts in women’s reproductive health, immigration, technology, torts, cloning, immunization program officers and inventors as well as organ transplant experts. OK? Satisfied! This crew knows their stuff so you can feel fully confident in their extensive expertise on adverse vaccination reactions. Happy now?

Vaccines are the most important health breakthrough of all time! Along with this very balanced group of experts, stakeholders were allowed to testify in front of the committee. The “stakeholders” included vaccine makers, vaccine patent holders, vaccine distributors, parents who love this highly aggressive vaccine schedule (and believe you me they were hard to find but we did it!) as well as 1 parent of a vaccine injured child, Barbara Loe Fisher. Ok, totally level playing field right?  The fact that vaccine safety is the number one health concerns of all new parents was more than fairly represented. So you are welcome! We bent over backwards to accommodate you people!

Vaccines are sacred. Ok so there you are- a highly diverse body of stakeholders  – a dozen vaccine salespeople and Barbara Loe Fisher. Perfect! Who could ask for more?

Vaccines save lives! Needless to say our committee poured over the work of noted vaccine safety experts: Eric Fombonne (professional testifier against children in vaccine court), DeStanfo (CDC vaccine representative), Trotter, Tse, O’Leary (ardent foes of vaccine safety research and hysterical defenders of all vaccines all the time). And finally we really emphasized the critical work of CDC partner and indicted criminal, yes, the only and only Dr. Poul Thorsen. Nitpickers have complained that because of his thievery and deliberately misleading research practices, the Thorsen studies should now be referred to as Madsen studies. Ok, fine. “Madsen”/ Thorsen’s apprentice worked hand and hand with the Danish Serum (Vaccine) Institut on his excellent and thoroughly objective research.

We want to start testing the Anthrax vaccine on American children now, asap, (true!). We know you moaners out there would complain that our research was heavily biased towards professional vaccine makers and backers so we also skimmed the Dr. Bob Sears “Vaccine” book, which advocates fully informing parents of vaccine side effects . Sears holds no vaccine patents and does not work for a vaccine maker (no wonder his is so misinformed!). FYI we found that his book to be dangerous and we had only negative things to say about it.

Vaccines are the greatest medical innovation of all time.  In summary our report concluded:

1)             All vaccine makers are required to report adverse effects in their clinical trials. Duh, the vaccine makers almost never  report any adverse effects so more proof vaccines are proven to be safe!

Continue reading "Katie Wright on the IOM Vaccine Report" »

Dr. Alan Guttmacher and the Genetic Comfort Zone

GuttmacherBy Katie Wright Dna kid

Dr. Guttmacher is the Director the Eunice Kennedy Shriver Center Institute for Child Health and Human Development.

We all know that autism is, by far, the most prevalent developmental disorder, (for some a disease), affecting American children. An astounding 1 in 54 American boys has autism. Only a small fraction of those with autism will fully recover and live a independent life. Given the seriousness of this situation you would think that Dr. Guttmacher would be well versed in all issues pertaining to autism.

Well you would be mistaken! I am not sure if it is arrogance or just disinterest that prevents Dr. Guttmacher from knowing much about autism. My guess it is a little of both. Prior to the start of the Congressional hearing on autism I asked Dr. Guttmacher if he would be staying to hear my father’s 5-minute testimony. Guttmacher answered, “No, I have got other priorities.” As if we have not noticed!

Still being asked to testify in front of Congress is an endeavor even the most entitled, jaded public servant would take seriously. But not Dr. Guttmacher! He seemed to arrive at the hearing with only the very basic understanding  of autism and a prepared speech on the sanctity of our childhood immunizations. Obviously the latter being his main priority.

In high school I was an indifferent, lazy teenager. Ask my parents. I don’t think I ever took a textbook home to study. I did the minimum, did just OK and that was fine with me. However, I was a teenager, my failures impacted no one but me. Dr. Guttmacher is supposed to be leading the charge for autism research innovation and directs tens of millions of our autism research dollars. For Guttmacher to put such minimal efforts into autism is tragic.

Continue reading "Dr. Alan Guttmacher and the Genetic Comfort Zone" »

If Autism Experts Were In Charge of Flu Epidemic

Blue fluManaging Editor's Note: Imagine if Susan Hyman, Nancy Minshew and Paul Offit turned their "talents" to the flu.....  Here's Katie Wright's take on the idea. 

By Katie Wright

Don't Be Selfish! Get a Flu Shot!

You know I don't think there is a flu epidemic at all!

This is obviously just a case of better diagnosing! People have now "learned the signs" of the flu, that's all.

Clearly this is merely diagnostic substitution.

People who are coincidentally getting sick now might have "flu like" symptoms but NOT the flu. They are just looking for something to blame! I feel sorry for them, how pathetic!

Also Peter Bearman states  that greedy people are hearing of other people getting good medical help and are jealous so they move to the same area in order to seek the flu diagnosis so they too can get all those services that their flu friends are receiving!

Also I think we need to do a TREMENDOUS AMOUNT of genetic research into the flu- not into treatment OR causation- just research the genetic pathways of flu like symptoms.

Continue reading "If Autism Experts Were In Charge of Flu Epidemic" »

A Thank You to Congressman Posey for Autism Hearing

PoseyBy Katie Wright

Thank you to Congressmen Posey!

I love the Sunshine State! Congressmen Posey asked the toughest questions of CDC and NIH representatives at the recent Congressional Oversight Autism Hearing.  Posey and showed incredible leadership in his passionate advocacy for families affected by autism. I know I speak for millions of Americans affected by autism when I thank Posey for giving a voice to our children.

Congressmen Posey is unequivocally pro vaccination. He is pro vaccine safety but anti government waste. Posey knows that our research dollars are too few to squander.

Wow, is Congressman Posey a watchdog for your autism research dollars! Until now the CDC has never been held accountable for autism researcher Dr. Poul Thorsen’s  $1 million embezzlement of our research dollars. Thorsen was among the leading authors on 22 NIH /CDC studies. For almost three years the CDC has refused to explain how Thorsen stole this money and what steps have been taken to ensure this does not happen again. Who among us would keep their jobs if someone we were supervising stole over a million dollars? Who among us would keep our job if we refused to explain why an employee stole a million dollars?

Over and over again we were told by Dr. Coleen Boyle that CDC autism research may be laborious but is flawlessly done and held to the highest standards. Yet Thorsen, the premiere autism/ thimerasol researcher, author of the of the most widely cited vaccine / autism study is an indicted felon. In fact Thorsen’s studies were so unethical and poorly designed and executed that they would never be published today. Yet the CDC proudly stands by Thorsen’s work. And this is the crazy part- they expect consumers to stand by Thorsen ‘s work as well!

Dr. Boyle’s claim that Dr. Thorsen was just one of many investigators is disingenuous. Please, Thorsen ran the whole Danish operation. Thorsen was the head of the CDC sponsored North Atlantic Neurological Epidemiology Alliance.  NANAE received over $5 million from the CDC. Thorsen was, unequivocally, the boss.

Because it is more than reasonable to assume that a corrupt and greedy man wanted by the FBI would not adhere to the strictest ethical and methodological, research standards, Congressman Posey asked if Thorsen’s seminal autism research had been validated by outside independent  researchers. After about 5 minutes of hemming and hawing Dr. Boyle finally admitted,” no.”

Continue reading "A Thank You to Congressman Posey for Autism Hearing" »

Review of Autism Hearings April 2012

UselessManaging Editor's Note: We first ran this post last Spring.  Dan Olmsted also provided his review of this Autism Speaks/CDC meeting in his post titled: Mush From the Wimps: Autism Speaks and the CDC Take Over Capitol Hill as Rep. Smith Bows Out

By Katie Wright

You have to see this to believe it. No transcript could do this briefing justice.

Thank God Beth Clay was there and filmed the briefing on her phone. I had been told that it would be too difficult to broadcast the briefing. Beth used her iphone and then put the footage on Facebook, not complicated, not expensive.

OK this was a joint CDC Autism Speaks briefing on the new autism prevalence numbers. Listen, I am sure Dr. Marshalyn Yeargin-Allsopp and Dr. Baio are nice people. The problem is that their understanding and conception of autism is both dated and deficient and, sadly, they are very bad at their jobs.

Yeargin-Allsopp is always polite with parents, but I am sorry to say she is incompetent. Yeargin-Allsop has been working in this job for almost 30 yrs and should have been fired 25 years ago. In the past 2 decades Yeargin-Allsopp has had access to tens of millions of dollars and could have been a hero to American families because she had the opportunity to change the face of autism and stop this epidemic. Instead Yeargin-Allsopp and her partner Coleen Boyle (another sad story) have spent decades devising and executing dreadful, wasteful research that has accomplished little. Just how many studies on parental age do we need? 10, 50, 100? Because we are on our way there! Yeargin-Allsopp has also authored a number of studies on autism and parental aggravation. This is very ironic considering the CDC is a tremendous source of parental aggravation. Let’s not forgot the studies on fat moms causing autism, either. CDC autism research is literally a treasure trove of nonsense.

Continue reading "Review of Autism Hearings April 2012" »

Government NIH only 5% of Budget on Environmental Factors

NIH 5 percent


By Katie Wright

Accountability at IACC! Thanks to the incredible, and I mean incredible, work of Dr. Susan Daniels’ IACC team the IACC audience were all treated to a wonderful presentation detailing the exact breakdown of how all NIH autism research monies were spent. (Click link for details spending analysis.) I love this office! Dr. Daniels’ team gets the job done like no one else. They produce an incredible amount of really important work. This work = accountability. Wow, did this office use the their IACC hiatus well. They produced reams of valuable information as well as a great web search program. Thank you.

The report CLEARLY showed that despite promises and assurances to the contrary, the NIH continues to spend the lion share of its $ on genetic research (76,798,748) and only 5% (yes, FIVE PERCENT, $4, 432,899) of its entire autism research budget on studying environmental factors. Just how many times have we heard Dr. Insel waxing on and on about how he now understands the importance of environmental research. Speaking for myself I have been hearing this sorry refrain for 5 yrs. Insel goes on talk shows, NPR, web interviews talking about how committed the NIH is to researching potential environmental triggers of ASD. This feels like just another case of a politician telling the voters what they want to hear and then quietly doing the opposite.

As usual Dr. Linda Birnbaum of the NIEHS defends the lack of environmental research by stating that “environmental” category is strictly defined as the study of chemical compounds and much gene / environment research was not included in this category. Please- “gene- environment” research is usually 90% genetic and 10% environmental in nature, so let’s be totally transparent here. Incredibly, we can always count on Dr. Birnbaum to rationalize the lack of environmental research funded via IACC. Of course environmental research means the study of chemical compounds! What is environmental supposed to mean: the study of Fragile X and the genome? No. Families want strictly accurate categories, not environmental padding.

Clearly it is not just the public comment speakers who are unhappy with the fact that ASD environmental science is grossly underfunded. Almost immediately Dr. Insel went on the defensive, attempting to rationalize the massive disparity between genetic and environmental research investments. Insel stated:” I mean people are all upset about this but it isn’t like 95% of the research is genetic and only 5% is environmental!” Yes, Dr. Insel that is pretty much exactly how it is! How I wish I was not in listen-only mode.

 Clearly Dr. Insel had been working over time pre IACC meeting in order to portray the IACC report as an incomplete or inaccurate measure of autism research expenditures. In order to hide from the actual facts, Insel argued that the IACC portfolio report did not include all the autism research IN THE ENTIRE WOLRD and therefore the report was only semi accurate portrait of environmental research. Furthermore, only if one looked at all the research IN THE ENTIRE WORLD there is actually a great deal of ASD environmental research.  Oh boy was Dr. Insel on a tear here! On and on and on about the explosion of autism research all over the globe and how much environmental research is really going on. In fact, by Dr. Insel’s count 38% of all autism research $ is spent on environmental science. We should be counting the ENTIRE WORLD of autism research in our portfolio accounting!

OK, this is nuts on so many levels. You know that crazy speech Otter gives Dean Wormer and the college students in “Animal House?” Otter insists that if Delta House is put on double secret probation then the entire fraternity system should be on probation and if Dean Wormer is blaming the entire fraternity system than he is blaming all colleges, and if all colleges are at fault than isn’t the entire United States of American really at fault…I know it makes no sense, but that is my point. Finally Otter says to Dean Wormer, “say what you want about me sir! Say what you want about Delta House! But I am not going to stand here and let you badmouth the United States of America!” All the students applaud.

Continue reading "Government NIH only 5% of Budget on Environmental Factors" »

Katie Wright on IACC 2012

Mis targetBy Katie Wright

Secretary Sebelius came to address the 2012 Inaugural Interagency Autism Coordinating Committee. Over and over again Sebelius has failed to connect with the concerns affecting the 2 million American families affected by autism, and this time was no different. By any stretch of the imagination autism is a national crisis, a national emergency, an epidemic. 1 in 88 American boys have autism. That is an astounding number, a number with tremendously negative implications for the continued success of our country.

More American children have autism than those with all pediatric cancers and HIV combined. So how did Secretary Sebelius and NIH director Dr. Francis Collins describe this epidemic? “Autism is a national health challenge.” “A health challenge?” That sounds like a good thing! Does anyone remember the President’s National Physical Fitness Health Challenge of the 1980s? School aged kids who met minimal Phys Ed requirements earned a “diploma” from President Reagan. I remember proudly hanging my “health challenge” certificate on the wall. It was a “challenge” to do the arm hang for 30 seconds. Autism is not a “challenge,” autism is a national health emergency.

However, what disturbed me more about Sebelius’s speech was its primary focus on the Affordable Care Act, rather than autism. Sebelius talked about how difficult insurance reform has been for the administration, how the Congress is trying to repeal the Affordable HealthCare Act…the subject of children and families suffering with, not just celebrating, autism barely came up! The only stakeholders Sebelius acknowledged were the 4 IACC members with HF Aspergers. None of them even campaigned for the CAA, the act that made IACC possible. Even worse, at least one of Sebelius’ appointees campaigned against the CAA!

I would like to see Secretary Sebelius praising Democratic Congressman Matheson for voting against President Obama’s Affordable Health Care Act. Matheson not only voted against the law but is fighting to repeal it. Matheson brags, “I will vote against the Affordable Health Care Act at every opportunity!” Now imagine Secretary Seblius rewarding the Congressman with a seat on the HHS health insurance committee after publically thanking him for lobbying against the Affordable Health Care Act in the first place.

Secretary Sebelius failed to demonstrate that she understands: a) for many families autism involves tremendous suffering, b) too many people with ASD have disabling medical problems, c) the majority of ASD families want more environmental and less genetic research and d) the CAA was passed and the NIH has money to spend on autism research thanks to the tireless lobbying work of ASD families throughout the country. Easy stuff to understand and validate. Nothing controversial here. It would have cost Secretary Sebelius nothing to acknowledge these points.  And it would have been the smart thing for her to do.

Continue reading "Katie Wright on IACC 2012" »

The Truth About Vaccine Safety

Oops signBy Katie Wright

It is a mess. That’s the truth.

Over and over again we see govt officials, the AAP and, especially, the CDC blame vaccine safety advocates for the lack of trust American families have in our infant and toddler immunization schedule. The CDC has repeatedly said that any parental concerns over vaccine safety are groundless. So many times we have been lectured about the “extremely safe protocols” surrounding vaccine testing, production and storage.

However, recent news confirmed that 75% of all pediatric vaccines are unsafely stored. I want to say that a few times because it bears repeating.  A full SEVENTY- FIVE % of ALL PEDIATRIC VACCINES are STORED AT UNSAFE temperatures. Not only are vaccines stored at unsafe temperatures but expired vaccines are regularly injected into babies and toddlers.

You may be asking where this information comes from? No, not Generation Rescue, the NAA or ARI but the CDC themselves. So unless they are lying to make themselves look bad, a highly unlikely event, I think we can take them at their word here.

Hmmmm…now who is responsible for the fact that infant and toddler vaccines are unsafe? Jenny McCarthy? SafeMinds? Jenny and SafeMinds are regularly accused by vaccine makers of stirring up unnecessary worry about vaccines and engendering the health of our nation. They are also blamed for causing outbreaks of whooping cough and the measles. Hmmmm…I always found this interesting because almost all of the kids who get these diseases WERE indeed vaccinated against them. Yet still, somehow, Jenny McCarthy, magically, infected hundreds of vaccinated kids with the whooping cough and measles.

I am just throwing this out there, but could these whooping cough outbreaks be the result of the fact that SEVENTY- FIVE  %  of AMERICAN KIDS HAVE BEEN INJECTED WITH EXPIRED OR IMPROPERLY STORED VACCINES? But, for the sake of the argument, let’s get back to the conspiracy theory - autism Moms and Dads are responsible for disease outbreaks. Is Jenny McCarthy running your pediatricians’ office? Have you ever seen Jenny McCarthy working in the vaccine storage area? Maybe you have seen me, Lyn Redwood or Louise Habakus administering expired vaccines at pediatric practices or driving vaccine delivery trucks to doctor’s offices? If so, speak up.  

Continue reading "The Truth About Vaccine Safety" »

Dr. Michael Stoto Claims Parents Not Sophisticated Enough Understand A Vaccine Injury

DeliveranceBy Katie Wright

When my son Christian was small he had a couple of really bad reakshuns to those bunches of those baby shots, I mean vaccines, whatever the heck you call them. So when I heard that a big deal mucky muck government committee was going to talk about vaccines, and, you know, bad things that can happen when kids get so many needles, I tuned in!

I don’t understand all that fancy doctor talk but I think I got the some of the gist. Dr. Michael Stoto talked about why I am probably wrong and how I must have imaginen those bad things that happened to my son after that giant bundle of shots.

Dr. Stoto said that “parents are not sophisticated” enough to recognize what an adverse vaccine Stoto reakshun is. What does a fancy $10 word like “sophisticated” mean? All his high falutin words whizzed right over my head.

My small, peanut size, unsophisticated, whatcamacallit brain tried so hard to take in what this important doctor man was saying. I think Stoto might be right and he should be the one to decside if a baby had a bad needle reakshun, not their unsopticat… parents.

All of Dr. Stoto’s fancy talk convinced me that there are no bad reakshuns to giant bunches of Lucille-ball-300x351needles. When my friend’s toddler took her son to the emergency room after the DTap it was a coincidem (whatever the heck you call that when 2 things magically happen at the same time). Dr Stoto said that the vaccine accidents in the big VAERS datahouse, or database, whatever you call it, have not been “verified” by him or others so they are probly suspect.

Sure I don’t know any parents whose kids had super bad reakshuns to needles and whose doctor even made that VASE report but I am sure the big doctor is right and they probably are not real anyway.

The AAP- you know those kid doctors- finished up this impotint meeting saying  DON’T study the vaccine, schedule at all. We don’t need to know nothing and should leave things exactly like there. Listenin to unsopticate parents will get u knowhere. I don’t no why no parents don’t trust doctors but I am sure Dr. Stoto  and the AAP can tell me why in a way my tiny brain can understan.

Katie Wright is a Contributing Editor to Age of Autism.

Katie Wright: IMFAR Hasn't Come Far for People with Autism

Down drainManaging Editor's Note: Previous AofA posts on Imfar by Katie Wright include:
5/30/2010: Katie Wright Goes to IMFAR, IMFAR, Where Science Stands Still,

By Katie Wright

I know how hard it is to meet the needs of our kids. It is such tough going for so many of our families. Less than half of ASD kids make a recovery from early intervention and behavioral therapies alone. ASD kids suffer from an incredibly high rate of gastrointestinal distress, severe food allergies, and mitochondrial and immune dysfunction. PANDAS and Lyme disease are causing permanent neurological damage as they go undiagnosed in tens of thousands of ASD kids. Most of these problems go untreated because they are virtually unstudied. ASD families overwhelmingly want to see more investment in environmental, rather than genetic research as well as an open and honest discussion of our vaccine schedule and adverse reactions.

So are you ready to have your mind blown? IMFAR barely covered ANY of these issues. You want Fish on biketo know what kind of oral presentations IMFAR did offer?

1)   development of baby sibs, attunement of baby sibs, social cues of baby sibs…studies 1- 45….

2)   video modeling and the effect of robot therapies

3)   sequential social engagement, attunement of toddlers age 12-24 months - not to be confused with the social and nonsocial toddler events and toddler tracking social cues

4)   pupil light reflexes

5)   facial phenotypes (hypothesis that our kids have dysmorphic faces- helpful AND interesting!)

6)   XXY syndrome, Prader Willi Syndrome, Williams syndrome (it is nice that IMFAR really makes such  a giant effort to include that 1% of ASD people with these rare diseases).

Continue reading "Katie Wright: IMFAR Hasn't Come Far for People with Autism" »

Katie Wright on The Congressional Autism Briefing April 28, 2012- Mission Impossible

UselessManaging Editor's Note: Dan Olmsted also provided his review of this Autism Speaks/CDC meeting in his post titled: Mush From the Wimps: Autism Speaks and the CDC Take Over Capitol Hill as Rep. Smith Bows Out

By Katie Wright

You have to see this to believe it. No transcript could do this briefing justice.

Thank God Beth Clay was there and filmed the briefing on her phone. I had been told that it would be too difficult to broadcast the briefing. Beth used her iphone and then put the footage on Facebook, not complicated, not expensive.

OK this was a joint CDC Autism Speaks briefing on the new autism prevalence numbers. Listen, I am sure Dr. Marshalyn Yeargin-Allsopp and Dr. Baio are nice people. The problem is that their understanding and conception of autism is both dated and deficient and, sadly, they are very bad at their jobs.

Yeargin-Allsopp is always polite with parents, but I am sorry to say she is incompetent. Yeargin-Allsop has been working in this job for almost 30 yrs and should have been fired 25 years ago. In the past 2 decades Yeargin-Allsopp has had access to tens of millions of dollars and could have been a hero to American families because she had the opportunity to change the face of autism and stop this epidemic. Instead Yeargin-Allsopp and her partner Coleen Boyle (another sad story) have spent decades devising and executing dreadful, wasteful research that has accomplished little. Just how many studies on parental age do we need? 10, 50, 100? Because we are on our way there! Yeargin-Allsopp has also authored a number of studies on autism and parental aggravation. This is very ironic considering the CDC is a tremendous source of parental aggravation. Let’s not forgot the studies on fat moms causing autism, either. CDC autism research is literally a treasure trove of nonsense.

Continue reading "Katie Wright on The Congressional Autism Briefing April 28, 2012- Mission Impossible" »

Katie Wright: Confessions of an Obese Autism Mom

Fat skinnyBy Katie Wright

OK, my secret is out. I am a big fat load and my out of control eating caused my son's autism. The minute I found out I was pregnant I started eating all the food I could get my hands on. I ate a lot of tuna fish. My doctor says it is good for the baby and perfectly safe if I ate it 3-4 times week. I was 45 when my son was born and my husband was 70. I am told those are the typical ages of new parents who later have a child diagnosed with autism.

When I wasn’t eating I laid awake at night scheming how I could secure a disproportionate amount of ouPie eaterr city’s educational services for my unborn child. If Christian had to have a disability so be it! I wanted those easily available free services given to all children with disabilities. In fact I actually sought out the autism diagnosis because I heard that a lot of families in my neighborhood had autistic kids and were receiving all these incredible therapies. As Dr. Peter Bearman says, autism is socially contagious! Don’t I know it!

As I got fatter and fatter I got social security to pay for a jazzy scooter. How I loved zipping  around town, knowing I had, yet again, figured out a way to work the system!

Days1I lived on the edge when I was pregnant. I watched a lot of TV (now I Pregnant drugsknow TV is a major autism trigger.) I walked in the rain (apparently very dangerous to unborn children.) I knew I was playing with fire but I loved it!

Whenever I was slightly sick I immediately scooted over to my doctor’s office and demanded all the medication I could get. Like all Moms I liked to take a lot of medication during pregnancy. I never gave a thought to how it would affect my unborn child. Anti-biotics, SSRIs, you name it I took it! A healthy Mom is a happy Mom, right?

RipoffThen there was the stress. In retrospect I have learned that stress probably causes autism as well! Who knew? Stress was hard for me to avoid while pregnant. Do you think it’s easy dreaming up schemes to rip off the government? Well it’s not. Sure I loved my government paid for Jazzy scooter but getting around when you are obese turned out to be hard, stressful work. While I was pregnant I was really worried and stressed out that my child might not qualify for all the amazing, free educational services in my town. I needed a back up plan. I scouted out other towns with more services and made plans to move if I lucked out and autism was in the cards.

Continue reading "Katie Wright: Confessions of an Obese Autism Mom" »

Gabby Giffords and Autism

GABRIELLE-GIFFORDS-PHOTOBy Katie Wright

Like all Americans, I’m sure, I am in awe of Congresswoman Gabby Giffords. It is easy for ASD parents like myself to get bogged down in frustration and disappointment with government agencies and officials. However, a congresswoman like Gabby Giffords is someone we can all admire.

It is important to look for inspiration in life wherever we can find it. Watching Gabby Giffords make her way through Congress, saying goodbye to her colleagues and staff and submit her resignation to the Speaker of the House truly moved me. We all would like to think we would handle such a devastating attack with such determination and grace. Giffords was shot in the head a year ago and her incredible recovery is a testament to excellent medical care and Giffords’ resilience and hard, hard work.

As I watched Congresswoman Giffords make her way through Congress my thoughts shifted towards the nature of traumatic brain injuries. Like many ASD parents, I have never really viewed Christian’s “autism” as autism, but more akin to a traumatic brain injury.

Many of you know Christian’s story but for the benefit of those who do not here it is. In 2003 I had a nearly toilet trained, silly and affectionate, very athletic 2 year old boy with a 1,000 word vocabulary and then, within months, he was, in essence, gone. Christian lost all his words, every single one. Not only that, Christian clearly could no longer understand English.  Christian easily spent half the day screaming and trying to bang his head on the floor. All language requests were met with a glazed, checked out look, a look I later came to understand as absence seizures. Christian also stopped recognizing family members. First he no longer knew our friends, then my siblings and then his grandparents, with whom he had been very close. Christian once ran to greet my mother; he now stared at her blankly and screamed if she got too close. Whereas in spring 2004 Christian clamored to “hold his baby” and tell his baby brother, “it’s OK, no cry,” by fall his brother was an inanimate object to him. Simultaneously, Christian lost all gross and fine motor abilities. He went from being a playground champ to being unable to climb a simple ladder or stairs.

Doctors told me that autism was a social and behavioral genetic disorder. I kept asking what does that have to do with the fact that Christian can’t recognize his family or the fact we are constantly in and out of hospitals? Christian had a brain injury not a social disorder.

Dr. Nina Zeldis, a professor of brain rehabilitative medicine at Tel Aviv University, is arguing for a paradigm shift in treating head trauma, “we need to understand the physiology of disease- it really is a disease- and how to manipulate it.” Zalfonte describes recovery not only as behavioral but “helping people to enhance integration of learning and improve balance and verbal output.” That sounds familiar to me. Christian and I spent hours and hours every day on the playground relearning how to climb a ladder, use a slide, run across a mini bridge, slide down a pole. Our family went swimming, bought new bikes, a trampoline, a Barney workout tape, pot holder kits, anything he was willing to do (and it was hard work getting Christian to do any of this for a long time) that might help him regain his fine and gross motor abilities. The process was much like how people relearn how to walk, shower or dress themselves after a stroke. Christian once again learned how to use the playground (rather than screaming in fear when he was on a ladder or slide), put his shoes on, swim, drink from a sippy cup... My whole family were, naturally, thrilled to see Christian’s motor skills recovery. He worked so hard to make it happen. Unfortunately, recovering Christian’s cognitive abilities and physical health would prove much more challenging.

Many amazing OTs helped Christian along the way. Don’t you wish basic occupational and physical therapy for ASD kids got some real attention by researchers? If this subject got 1/50th the investment of psychotropic drugs trials wouldn’t you be thrilled? Gabby Giffords also had a team of OTs and speech therapists helping her.

Continue reading "Gabby Giffords and Autism" »

Courchesne Brain Study Not Worth Sacrificing our Children Further

Brain flushBy Katie Wright

I frequently read about the importance of brain and tissue donation by autistic people for autism research. Apparently there is a severe shortage of this tissue available for study. To me my child’s brain is the essence of Christian. So much unnecessary damage has already been done to Christian’s brain.  His brain was shown so little care and respect by the medical research community. Doctors took risks with my child they have no right to take. I feel I did not, was unable to, protect Christian’s brain when it really mattered and he suffers from traumatic brain damage as a result. Naturally, now I am extremely protective of Christian; it is the least I can do.

No one knows better than parents like me that autism research is moving too slowly, making too few ground breaking or life improving discoveries. If Christian’s deceased body could meaningfully contribute to innovative causation research, it would be very, very hard, but I would say yes and donate his body. If his brain were used to accelerate true progress I think it would be a great tribute to his spirit. I am sure most ASD parents feel the same way. 

However the recent Courchesne Study made me change my mind about donating Christian’s brain to science. This study represents my nightmare, the worst-case scenario. Children’s brains have been used for politically driven poor quality science. I would rather Christian be buried with his brain intact than used for such abysmal research.

JAMA should be ashamed of themselves for publishing this Courchesne study. Courchesne examined the brains of 7 children with autism and 6 controls. Yes, this study is entirely based upon 13 people. Courchesne found that the autistic brains had more neurons in the pre-frontal cortex than the control brains.  He describes these findings as, “an incredibly important discovery that tells us something started going wrong in prenatal life in children with autism.” This is both an unbelievable and unbelievably self-serving statement filled with hyperbole and grandiosity.

What Couchesne’s study actually tells us is that 6 ASD children had more prefrontal cortex neurons than 7 typical children.  There were no aged matched controls! 2 of the 7 “ASD” children did not even have an official ASD diagnosis! 5 of the 7 ASD kids were on anti-psychotic drugs. We have idea how these drugs affect developing brain tissue.  1 of the control children had been taking Concerta and klonopin. Another control had had an organ transplant and was on immunosuppressive drugs for lengthy periods of time.  There are only 5 controls not, as far as we know, on various prescription drugs. The fact that this study was actually published only proves how low the bar is for ASD genetic and brain research. There are not enough hours this day to list all the incredible, innovative environmental research studies regularly rejected by autism research journals. A 7-person biomedical study would NEVER be published by JAMA, I promise you.

There is a powerful and pervasive need of so many in the autism research community to “prove” autism is genetically and prenatally determined. The majority of autism researchers have spent their professional lives betting on the belief that autism is mainly a heritable genetic disorder of the brain. They have staked their careers on this hypothesis. They have spent hundreds of millions of dollars looking for the “autism genes.” This area of autism research has eaten up 80 cents of every dollar available for research. For decades we have been hearing promises that this genetic/ brain research would soon yield breakthroughs and exciting new treatments would result. The only problem here is they have not delivered, not to our children, not to our families nor to the taxpayers.

Continue reading "Courchesne Brain Study Not Worth Sacrificing our Children Further" »

The Failure of The Autism Treatment Network's Dietary Intervention Program

Money down drain dollar sign waterBy Katie Wright

It is so disheartening that the Autism Treatment Network’s dietary intervention research program has accomplished so little over the course of 5 years. In that time hundreds of thousands of dollars have been wasted in badly designed, poor quality research studies.

 Not 1 child has been helped by ATN’s dietary research program and no breakthroughs of any kind have been achieved.

Under the leadership of Dr. Susan Hyman of Rochester NY, ATN’s dietary intervention research has been based on outmoded science. Remember the FDA’s touted nutritional guidelines of the 80s and 90s? Remember the “Food Pyramid”? Remember how the pyramid was about 25% bread and made all of us fat? Well, Hyman studies the “Food Pyramid” of autism dietary intervention research, courtesy of your tax dollars and mine.

Dr. Susan Hyman conducted the same dietary intervention research studies in 2001, 2003, 2009 and again in 2011.  All these studies use the same bad design, the same dated recipes, the same selection bias errors and produce the same useless results.

2003 CAM (Hyman labels this complementary, alternative medicine)  GF/CF study -- result was no useful insight, no helpful recommendations. Conclusion: more research needed. You will see a theme here…

2005 CAM dietary intervention study, conclusion: no useful insight, more research needed

2005 CAM dietary intervention study, conclusion: basically nothing works, more research needed.

2007 ASD kids might have taste impairment (how about a gastrointestinal impairment? Lets study that!), more research needed.

2008 Doctors need  to develop “communications strategies” for dealing w/ CAM parents who employ dietary intervention methods. Somewhat like how parents need “communications strategies” for dealing with troubled teens.

2008 CAM “clinical providers need to understand the efficacy, and lack there of, of CAM.” More research and “communication strategies” needed here as well.

2011 GF/CF diet studied -- no effect -- more research needed.

OK, from 2003 to 20011 Hyman has conducted 7 studies on ASD dietary interventions. None of Hyman’s studies have produced any original insights or discoveries. Later you will read about innovative dietary intervention research completed for a fraction of Hyman’s smallest budget. Groundbreaking emerging research has produced incredible insight as well as extraordinary here-and-now opportunities to help ASD kids in poor health.

It is especially disappointing that Dr. Hyman’s research is devoid of input from an ASD specialist nutritionist, an ASD parent professional or even knowledge of post-2003 dietary interventions. Dr. Hyman fired renowned author, parent and nutrition expert Susan Seruossi in 2009.  Seroussi had lobbied for longer trials and the removal of processed food and artificial flavorings and colorings from the study.

Hyman’s GF/CF diet has allowed artificial colors and ingredients, as well as rice and potatoes. Artificial additives/colorings can cause ADHD (present in so many ASD kids). Even the FDA agrees! Not one parent I know who uses GF/CF allows garbage, processed food in their child’s diet. Although potatoes are not technically gluten they have a powerful opiate affect on this subset of ASD kids and lead to ever-stronger cravings for more carbs.  Once again, these foods are usually not part of the GF/CF diet.

Continue reading "The Failure of The Autism Treatment Network's Dietary Intervention Program" »

Katie Wright on Bachmann, Perry, Crony Capitalism and Genital Wart Vaccination (Gardasil)

Uncle sam hat money By Katie Wright

Has the Republican Party lost its mind? Are they trying to alienate every mother, grandmother and young woman in the Unites States?

I thought the Republican party believed in the paramount importance of individual rights and responsibilities, financial accountability of the federal government to the taxpayers and primarily, the importance of getting big government out of our lives, especially our families’ lives.  Well you won’t know that from watching the recent Republican presidential debate.

Full disclosure: I live in New York City and am not a conservative but my vote is up for grabs.

Michele Bachmann was the only candidate tough enough to question Rick Perry about his mandatory HPV vaccination policy. Perry accepted $30,000 from the makers of the HPV vaccine and his chief of staff went on to earn $300,000 working for the vaccine company. That former chief of staff, now Merck lobbyist is, naturally, a major Perry fundraiser. Perry basically forced Texas families to choose between giving their pre teen girls an experimental vaccine for a sexually transmitted disease or an education. Now if that isn’t big government in our lives in a big way what is?

Naturally everyone jumped all over Michele Bachmann. Apparently Bachmann did not receive Secretary Sebelius’ memo strongly recommending that the media not discuss vaccine safety issues. Yes I am serious. Sebelius said, on the record, that she personally “reached out” to politicians and the media not to discuss vaccine safety issues. Scary right? I wish Secretary Sebelieus had “reached out” to the 2 million families affected by autism, 90% of whom are dissatisfied w/ NIH autism research.

Well Rick Perry argued that he “knows” the HPV vaccine is safe. Hmmmmm….Has Rick Perry ever been a woman, a mother, or a teenage girl? Has Rick Perry raised over 20 children? Has Rick Perry had in depth discussions with his daughters about menstruation and sexually transmitted diseases? Somehow I doubt it, but I bet Michele Bachmann has. It was very sad to see the only person standing up for the rights of these pre teen girls was a woman and a mother, Michele Bachmann.  These girls cannot legally give informed consent to this dangerous experimental vaccine – yet they are asked to take all the risk. Cervical cancer is almost 100% preventable with annual pap smears. How about starting at the start and making sure all these girls have access to basic health care before forcing them to be inoculated or be thrown out of school?

Continue reading "Katie Wright on Bachmann, Perry, Crony Capitalism and Genital Wart Vaccination (Gardasil)" »

At IACC Geneticist Reacts to News Autism Is 50% Environmental

Homer money By Katie Wright

Dr. Insel begins each IACC meeting with a synopsis of the latest autism research. Insel is always right on top of the latest gene, brain, genome and brain imaging research. You know, the greatest hits of team old school autism research. Unless environmental research = old parents or depressed Moms these guys aren’t interested. Scores of innovative biomedical and environmental research studies have been published over the past year but Dr. Insel discusses almost none of it.

Until recently old school autism researchers managed to nurture an urban myth that autism is 90% genetically determined.  A brand new and well-designed research study found that genetics actually play a much smaller role shattering the old genetic/psychiatric paradigm.

This Hallmeyer/Stanford/Autism Speaks study found that over 50% of autism can be attributed to environmental factors.  This is game changing research. This study was conducted by geneticists who did not expect nor do they benefit from this outcome. The Stanford study was not bought and paid for CDC/ Thorsen/Danish epi junk research, but actual independent research with no pre-determined conclusions. Actual good work!

Remember back a few years ago when the government dismissed concerns regarding hormone replacement meds triggering breast cancer? The pharmaceutical companies and the FDA believed this was a crazy hypothesis; breast cancer is genetic. Well…solidly independent research proved otherwise, hugely otherwise. Most women immediately stopped taking hormone replacement therapy meds and newly menopausal women never started. Just one year later there was a 50% drop in breast cancer. 50%! So much for the environment playing a small role in breast cancer.

OK back to IACC. This Stanford study is the biggest news in autism research in years but what does Dr. Insel begin his discussion with? You got it! Brain and genes sequencing and the genome. Finally the Stanford study was mentioned- for like 1 minute. And guess who was IACC’s first guest lecturer of the day? Yes, of course, a geneticist, Yale’s Dr. Matthew State.

Nevertheless I found State’s presentation intriguing. He thanked the autism community for their patience with genetic research and acknowledged that progress has not come as quickly as he would have liked but promised that is changing. State urged everyone to be optimistic and explained his excitement regarding recent genetic findings. State repeatedly noted the great progress in genetic technology, described as light years ahead of where it was just 5 years ago.

State was polite and personable but definitely played defense. Major defense. The thrust of his discussion was that genetic research into autism was and is the most important, most promising area of study. State cited genetic research into Alzheimer’s as an example of great progress. OK, at this point I’m scared. Alzheimer’s disease was discovered ONE HUNDRED years ago. Yes, 1-0-0 years ago. Today despite, oh I don’t know, maybe a billion dollars in genetic research we still know nothing about how to prevent Alzheimer’s or how to treat it. If that’s successful genetic research- no thanks. Recently there has been a move to focus more on possible environmental triggers behind Alzheimer’s. The public is running out of patience. In short order guess what environmental researchers have discovered? There is a direct link between aluminum exposure and Alzheimer’s. So familiar!

Then the weird, what I like to call “shoehorn science,” arguments began. All of a sudden everything is “complementary.” State hypothesized that most genetic research is really both genetic and environmental anyway. Right. OK, pal try selling that all day long, no one’s going to buy it.

Continue reading "At IACC Geneticist Reacts to News Autism Is 50% Environmental" »

AAP: Trampolining Injuries Are An EPIDEMIC!

Evil tramp By Katie Wright

Recently,  the “Today Show” broadcast a terrifying segment on what the American Academy of Pediatrics has labeled “the epidemic of trampolining related injuries.”

Trampoliners all over our nation are in jeopardy! Any random jump can result in an injury. No one can know in advance if they can trampoline without causing harm. The AAP referred to trampoline injuries as a “national crisis!” Indeed, a generation of children are at risk.

Yet probably 95% of the time kids have a pleasant and safe experience on a trampoline. Why then are a small % of kids get hurt on a trampoline while other kids, jumping on the very same trampoline, are fine? Something must be wrong the kids who get injured, right? It could not be the fault of the trampoline!

My friend Heidi Roger argues these injuries must be result if an underlying genetic predisposition. I say that Heidi makes a lot of sense. If 95% of kids who trampoline do so without incident, environmental factors can only play a minuscule role in this epidemic of trampoline related injuries.

Heidi recommends that we immediately research the genetic backgrounds of all injured children. Do these children have parents or siblings who have been trampoline injured? Has the child always been a poor trampoliner? Did the parent miss the signs? Even though a child has trampolined safely for years, a sudden and severe accident must be the result of an unknown, but certainly latent, genetic condition.  Is there a secret history of bad bouncers in the family?

We must also study the DNA of unaffected siblings. Are uninjured siblings unaffected because they were no longer allowed to bounce or because they have less of a genetic vulnerability to bouncing related injuries?

Did the mothers of injured trampoliners take illegal drugs or prescription drugs while pregnant? Did mothers have infections during pregnancy that could have affected her yet unborn child’s sense of balance? Do multiples suffer the same rate of bouncing injuries as singleton trampoliners?

Obviously this is work for the genome researchers! The NIH must fund a study of all genes remotely related to coordinated bouncing. It is unlikely there will be just one gene for bouncing. This research will take dozens of years and hundreds of millions of dollars. Hopefully, in time, we will discover the genetic pathways into bouncing coordination and that will allow us to develop pharmaceuticals in order treat this condition.

Trampolining accidents are a mystery we need time to unravel.

Yes, Heidi and I are kidding. We know that trampoline accidents are real and can be very serious. I have been hurt on a trampoline and so has my younger son, but in this case at least, it was own dumb fault for buying a trampoline in the first place. Is there anyone in this country who is not aware trampolines are potentially dangerous? I knew the risk and chose, stupidly, to buy a trampoline anyway.

 No one told me that my kids would not be allowed to attend school if I did not buy a trampoline. No camp refused to enroll my son unless he was allowed to be a trampoliner. Most importantly, no doctor or health authority promised me that trampolines were “100% safe.” Quite the opposite, the medical community has always been upfront about the dangers of trampolines and the importance of parents making informed decisions.

Sounds pretty reasonable right?

Continue reading "AAP: Trampolining Injuries Are An EPIDEMIC!" »

Autism Centers of Excellence Devours Research Money with What to Show?

Money down toilet
By Katie Wright

I have been poring over every NIH autism grant from 2009. Every single grant, the amount awarded and the investigator is listed and categorized within of the Strategic Plan guidelines. The Strategic Plan recommendations have been really improving over time but the NIH grants have not.

While tallying up categories of NIH autism research I kept coming across giant grants for something called ACE. What is ACE? I had no idea, but apparently it means Autism Centers of Excellence. Excellence is an adjective used very liberally here. If, like me, you interpret the word “excellence” as meaning novel, exciting, innovative research that raises the bar, sets higher standards, you would be wrong.

ACE would more accurately be described as Autism Centers Extracting $ from Taxpayers for Redundant Autism research. ACE-TRAR, for short. Maybe its just me but I think our families want to see some “excellent” research in clinical interventions, medical interventions and environmental science so that we can prevent a % of ASD by identifying triggers. Those 3 areas of research represent huge spending gaps within the NIH. They are high priority areas for families. When was the last time you heard a parent longing for more face processing research?

ACE centers do no research on regression or biomedical science. Neither does ACE invest in any research on the ubiquitous and ignored GI and autoimmune problems endured and rarely treated effectively in children with ASD.

Virtually all ACE centers are doing identical face processing, autism “gene,” mirror neuron (an area of research that has been found to be useless in autism research) and autism diagnosis research. If you actually need more than a diagnosis from one of these centers you are out of luck, buddy. ACE centers also do plenty of MRI studies, the most over funded area of autism research. The research is so redundant, each center is almost interchangeable. ACE does no biomedical research and no novel treatment research whatsoever. No, ACE specializes in the few areas of autism research already saturated w/ $.

ACE eats up over 13 MILLION dollars of our autism research monies. To make matters worse it appears that a high % of that number goes towards administrative costs. There are all kinds of sneaky grants towards “ACE supplementation admin,” or “ACE core supplementation.” Whatever… it equals bureaucracy.

Continue reading "Autism Centers of Excellence Devours Research Money with What to Show?" »

Katie Wright: An Open Letter To NIH & Autism Research Community -- Watch CD Foakley, Broken Nights and Lost Days: Inside World of Severe Autism

Hands drowning
By Katie Wright

Over the past weeks we have heard genetic researchers hailing the discovery of the latest (I have lost count) autism “gene.” We have heard how “exciting” this discovery is, what a “breakthrough” this is.  All their hard work is paying off, and so on and so on…

I am sorry to say I am not excited in the least. These “breakthroughs” seem to appear with great regularity yet make no impact on the lives of anyone actually living and suffering with autism.  Neither do these “breakthroughs” elucidate the cause of autism or treatment options. They merely describe the genes involved in a tiny population of ASD people with a chromosomal abnormality. This minuscule group has almost nothing in common with comparably huge population of those affected with severe regressive autism. 

Here is a video of a California family struggling to care for a severely autistic 17-year-old boy.

CD Foakley Autism Broken Nights and Lost Days

 I challenge anyone to live through this. I have seen and experienced many of the worst aspects of autism but this family truly humbles me. They are heroes in every sense of the word. The Mom introduces the family by stating it is Sunday and they have been up since 4:55 AM. This 17-year-old boy is in pajamas, a diaper and is wearing protective headgear. The boy repeatedly trying to strike himself and the Mom is attempting to hold his hands by his sides. She has the resigned, heartbroken voice of a parent who has been through too much and lives in constant emotional pain. The Dad is behind the camera.

The Mom describes how her son suffers from “savage self abuse” and has badly damaged his ear. The boy is walking in circles attempting, over and over again, trying to strike his head. The Mom reels off a laundry list of the medications they have tried, all of which have failed to help her son. In a desperate attempt to stop the self abuse she ties the boys hands behind his back. Over and over again this Mom says, “I don’t know what to do. I don’t know what to do.”

The boy is clearly ill, probably chronically so. He is emaciated. His Mom describes how he has suffered from impacted bowels. This is an extremely painful, yet common problem among the regressive autism population. Little to no research monies have been invested by the NIH towards uncovering the cause of bowel disease in these children.

 In 2009 the NIH invested $6,059,000.00 in face processing, eye gazing research. 

Continue reading "Katie Wright: An Open Letter To NIH & Autism Research Community -- Watch CD Foakley, Broken Nights and Lost Days: Inside World of Severe Autism " »

The Facts and Fiction of Autism Research

Facts By Katie Wright

It was good to see Mike Strautmanis at April’s IACC meeting. It was very nice to hear Mike say that President Obama follows IACC’s work and sees our families. I would like the White House to be able to see more IACC members in their seats so the president could better know our dedication to this cause, but that is another story.

Dr. Ananud Parekh from the HHS spoke about the $122 million his agency has spent on ASD research with the stimulus money. Dr. Parekh spoke at length about screening, early intervention and adult services. That is all very nice but these priorities leave out 80% of the ASD population. When are these guys going to understand that there are almost a million children with autism living NOW. HHS autism research cannot = here is your diagnosis, get early interventions and can call it a day.

The HHS needs to understand they have got to focus on helping children older than 3 and younger than 21! That is the bulk of the ASD population Dr. Parekh! We need environmental causation research and ASD medical research now- desperately, not the millionth screening campaign. We cannot screen and diagnose our way out of autism!

I remember hearing 2 politicians arguing about how to recover from the recession. One politician was advocating concentrating on building up lower level service jobs. The other guy said sure more jobs, any jobs, are a good thing but we cannot expect to build a world class economy flipping each others’ burgers and doing each other’s laundry. That is how I feel about the HHS’ myopic obsession with “awareness,” and “learn the signs.” The federal government can walk and chew gum at the same time!  Screening and early intervention yes, but that is step 1 of 10. Let’s move! Let’s raise the bar!

This brings me to Dr. Joseph Piven’s presentation and the Grand Canyon gulf between NIH monies spent and the actual research priorities of families living with autism. One can only imagine the tens of millions of our precious research dollars spent this bloated, unneeded project.

If you ask the average autism Mom and Dad what their research priorities are I am pretty sure they would answer, more intervention research, biomedical treatments, environmental research, prevention/ causation research. Not coincidentally these are grossly underfunded areas of ASD research. Let’s take a look at the numbers of published studies on various ASD research subjects according to PubMed.

1) Autism and Brain Imaging    953

2) Autism and Genetics     3, 277

3) Autism and the Genome         844

4) Autism and Fragile X     566 – 2% of ASD have Fragile X

Continue reading "The Facts and Fiction of Autism Research" »

The Crazy Science and Fury of Dr. Laura Schreibman

Waste-of-time By Katie Wright

You know who Dr. Schreibman reminds me of? Helen Thomas. You know the elderly White House reporter who finally retired last year? I believe Ms. Thomas is about 90 yrs old. As a courtesy for her many decades of years of service, the White House held Ms. Thomas a press briefing room seat, far, far beyond the time she was a journalist of consequence. Dr. Schreibman also reminds me of Ross Perot, in his later crazy years. It is so very difficult for many professionals, leaders in their field, to step off the stage. Oftentimes what propels these people to the top of their professions is a strong sense of self, a healthy ego and sometimes, yes, narcissism.  However, leaders can both grow and change over time or they can become calcified, zealously guarding their corner of the world, fighting change as if their life depended on it.

I was so disappointed to learn that Dr. Schreibman was leading the treatment part of the IMFAR conference. Guess who she lined up to educate parents about treatment interventions? A psychiatrist, a psychologist and a geneticist! So good luck to all you parents out there with sick kids, kids with GI problems, kids with nightmarish allergies, kids suffering from immune or mitochondrial or metabolic dysfunction. You were on your own before and now you are still on your own….But haven’t you heard the good news? Autism is a genetic disorder of the brain! Who knows if all those pesky “medical” problems even exist?

OK, I thought Dr. Nancy Minshew was the world’s angriest autism researcher. I was wrong, way wrong. Sorry Dr. Minshew, the title has now been passed to Dr. Laura Schreibman. Schreibman is hands down, no contest, the world’s angriest, most hostile, furious autism researcher.

Get ready for something special. Take a look at this video! Wow! Dr. Laura addresses the crowd as if they owe her money, stole her car and then toilet papered her house! Dr. Laura is absolutely furious. Beyond furious! Schreibman states that she has gotten to a place in her career were she feels “safe” to come out with her true beliefs about autism. So there is the threat to her ego, the field is changing, that scares Screibman, hence the need to batten down the hatches and lash out at those with new, different and more advanced theories.

Continue reading "The Crazy Science and Fury of Dr. Laura Schreibman" »

Interagency Autism Coordinating Committee Members Who Do NOT Show Up!

George-Costanza-eating 
By Katie Wright

I hope that as many people as possible in our community watch the IACC meetings. The Office of Autism Research Coordination National Institute of Mental Health makes it easy! This department, directed by Dr. Susan Daniels, provides comprehensive details of every meeting as well as an almost minute-by-minute breakdown of the program. This is tremendously helpful.

Before I get started with the content of the meeting I want to address the major problem of absenteeism. Didn’t Woody Allen say 90% of life is showing up? Well I wish certain IACC members would try actually attending these committee meetings.  I don’t think requiring IACC members to come to meetings is setting the bar too high. No one, least of all the public members, are forced to take IACC seats. In early 2011 Director Kathryn Sebelius reminded the committee than many, many, many members of the ASD community would like to serve on IACC. So why did some public members take committee seats if they could not commit to attending just 6 meetings a year?

In 2010 there was a crisis of leadership within IACC.  A leading federal IACC member resigned after sending inappropriate notes during meetings. Parents throughout the autism community were frustrated with IACC’s insufficient number of public members. The community was also disappointed with IACC’s failure to address environmental science or biomedical treatment research.

Autism Speaks, SafeMinds, the National Autism Association and TACA were the organizations behind the effort for more IACC accountability and better stakeholder representation.

Dr. Francis Collins graciously invited the entire autism community to the NIH to discuss these issues. The next month Dr. Collins asked Dr. Gerry Fiscbach of the Simons Institute to take an IACC seat. Simons is an academic foundation that conducts brain and gene research only. It does not have a public membership mechanism. Dr. Collins also invited Denise Resnick, ASD parent and director of an Arizona based autism intervention organization, Ari Ne’Man of the HF adult community, Dr. Marjorie Salomon of MIND and Dr. Geri Dawson of Autism Speaks to take IACC seats.

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Katie Wright on Autism Speaks Gastrointestinal Research Project

Stomach_ache By Katie Wright

Autism Speaks recently awarded two highly qualified, innovative and independent scientists $1.3 million towards a huge ASD/ gastrointestinal research project (HERE). Thank you Autism Speaks and Dr. Geri Dawson for making this project happen.

This grant is significant for a number of reasons. Children belonging to this ASD subset have been hugely underrepresented in autism research. Many of these children live with acute pain. If addressing acute pain isn’t a high priority what is? Hundreds of thousands of families caring for ASD children with debilitating GI disease want this research done. The days when parents have only the Internet as their main source of GI treatment information must end. It is time for environmentally induced regressions and GI disease to be a top research priority. Endless eye gazing and brain imaging research needs to move to the back of the line.

Rather than fund a few token GI grants for $60- $100k, AS made a real commitment to this issue by awarding Dr. Fasano and Dr. Ashwood $1.3 million towards a ground-breaking GI research project.  From any perspective this is a tremendous amount of money.

Years and years of hammering home the importance of this research went on behind the scenes in order to make this project happen. Nothing comes easy with GI research. There are few really excellent researchers working on this problem and it is exceedingly difficult for them to receive funding and get published. Too many public and private research organizations are afraid of where this research will lead and therefore, avoid it all together. Too many academics are totally unfamiliar with these children, preferring to more safely focus on the behavioral, rather than medical and environmental aspects of autism. This is a shameful reality.

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Call Bloomberg School of Public Health to Reschedule Brian Deer Event to Include Autism GI Parent

Telephone pills

Managing Editor's Note: The Department of Marketing and Public Affairs: Politely ask them to reschedule with Katie Wright or another autism/GI parent in the near future rather than give Deer carte blanche for his fallacies and fantasies.

410-955-6878
410-955-7619
410-614-6029

By Katie Wright

Today at 1:30 at the Bloomberg School of Public Health Brian Deer will be paid to speak as part of John Hopkins’ “100 year Celebration.” I wish all of our kids had something to celebrate about.

I called Tina, the director of Marketing and Public Affairs, and asked how much they are paying Mr. Deer. She would not give me an answer. I asked where these funds were coming from, no answer. I asked if she was aware that John Hopkins accepts many millions of public and private dollars a year to research autism, purportedly to help those affected with this disorder/ disease. No answer.

I also tried to contact Tim Parsons of Public Affairs and Natalie Wood-Wright of Hopkins Public Affairs. Tim Parson spoke briefly with me and promised someone would get back to me no one did.

My goal is not to stop Deer from speaking only for Hopkins to reschedule the event and take the ethically appropriately action by inviting a parent from the autism community who has a child with gastrointestinal disease to share the stage with Deer. I explained to Tim and Tina that my son can no longer speak. Christian cannot debate Deer or speak about how his GI disease and regressive autism has caused him years of pain. Deer is not a doctor. Deer is not a parent of an autistic child. Deer is not a clinician or autism specialist in any way, yet he is being paid to speak to an impressionable audience of students and medical professionals about why our children’s’ disease is not real.

No one from Hopkins Dept of Public Affairs cares about our kids and instead exploits them as research ATNS.

                

 

 

Katie Wright on NYT Review of Panic Virus

Good_boy_biglogo By Katie Wright

Last month's  cloying review of “The Panic Virus” HERE reads as if it were written by Seth Mnookin’s Mom.  Truly it is the kind of “review” I give my 7 years old’s work “unbelievable! You are the smartest boy in the world! I love this picture! It should be hanging in a museum!” OK, sometimes I go overboard with praise but I am a Mom and I make no apologies for not being objective.

But why does the NYT’s columnist Dr. Abigail Zuger ‘s review of this book read like a love letter to a precocious child? Zuger’s article is rife with inaccuracies and falsehoods. She is blinded by her adoration for the medical community, fellow doctors and her powerful all encompassing disdain for dumb parents who just don’t get it. Can’t the NYT’s afford a fact checker for Pete’s sake?  Wakefield’s work has been replicated. Why is Zuger so hysterically hyper defensive regarding the public’s demand for adequate vaccine safety research? Why in Zuger’s discussion of this book does she make zero effort to speak with a parent of a vaccine-injured child? Dr. Abigail’s review is not journalism. It is vaccine company advocacy at best and vaccine marketing at worst. It is an advertorial.

So than I thought to myself, “who is Zuger? What is the source of her nutty anti- consumer militancy? Why her serious hostility to ASD parents and why this need to characterize them as stupid saps?”  Zuger’s quotes are priceless. Here she describes why Mnookin is right and millions parents are wrong to express the smallest concern about vaccine safety. “Mnookin explains how scientists are trained to think about causation and how profoundly this measured approach is bound to infuriate a distraught parent.” What is she talking about? It is the parents who want the “measured approach” to research.  ASD families, not doctors, who want independent research done precisely because existing research is so poorly done and or paid for by the vaccine companies themselves.

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Katie Wright on World Autism Day

Autism_awareness_t268 By Katie Wright

Wednesday April 6 was World Autism Day at the United Nations. It was sponsored, incredibly, by the nation of Bangladesh. The United States was slow to commit to participating but in the end, thanks to the efforts Bob and Suzanne Wright, the US co-sponsored the conference.

Honestly, I was skeptical about the value of this event. Would it be a tedious discussion on whether or not the rise in ASD was real (yawn) or a celebration of autism as merely a difference, not a disability (crazy–making). I was pleasantly surprised this was not the case.

The daughter of Bangladesh’s prime minster, Dr. Wazed Hossain, a psychologist, spoke eloquently about the immediate educational and medical needs of ASD children throughout the world.  She emphasized the urgency in helping families now. Professor Hossain called upon the world’s presidents and prime ministers to get meaningfully involved in this issue. Dr. Geri Dawson of Autism Speaks was a very effective voice for our community. Dawson showed a gigantic graph illustrating the meteoric rise of ASD over the past 20 years and spoke about the reality of environmental agents as a major causative factor.

I sat there astonished that out of all the countries in the entire world Bangladesh was leading these efforts. Just incredible. Autism is probably the fastest growing and most expensive developmental disability in the world and only Bangladesh and the United States were willing to sponsor this event?

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Katie Wright: Doonesbury's Misogynistic Cheap Shot Against Jenny McCarthy

Jenny-mccarthy-med-new Managing Editor's Note: It's a sad irony that Gary Trudeau's wife Jane Pauley worked for NBC for many years. Would Trudeau have taken such a cheap misogynistic shot at Katie? And Jenny was in the hospital tending to Evan during a bout of seizures when the barftoon ran. A low, callous and highly "un-progressive" gesture on the part of Trudeau.

By Katie Wright

Gary Trudeau recently took a cheap shot at a single Mom who cares for her recovered, yet chronically ill, son. When this Mom is not with her son she can be found donating almost all her time and energy towards helping other ASD families in need. When is the last time Gary Trudeau fielded phone calls from broke ASD families and offered them tangible assistance? When the last time Gary Trudeau went to an autism conference and was mobbed for 5 hours by crying moms sharing stories of their sick autistic children? When was the last time Gary Trudeau spend Valentine’s Day in the hospital with his small son after he suffered a series of seizures? When was the last time Gary Trudeau heard his child spontaneously speak- today- yesterday? For me it was 2004, just prior to a series of adverse vaccine reactions that took away his voice.

Jenny McCarthy’s “crime” is advocating for objective vaccine safety research. Guess what Gary? Millions of American parents want objective vaccine safety research too. Safe vaccines are their number one health care priority. Gary, get ready to write a million more dumb cartoons. But I guess that is your specialty anyway?

When Trudeau is ridiculing Moms of sick kids with autism is he also making fun of our children’s chronic illnesses or does he doubt their existence? What are Trudeau’s credentials on the subject? Is he a parent of an ASD child-no, is he a doctor-no, is he a special Ed teacher-no, is he a medical researcher- and no to that too. Trudeau special autism expertise is the result of his long history as a… cartoonist? Gary Trudeau is a grown man who sits all day behind a table drawing stick figures with pencils and magic markers. From this lofty perch Trudeau has chosen to sit in judgment of millions of families he does not know and pain he cannot understand.

Guess what Gary? Your cartoon was inaccurate, offensive and unfunny. But that isn’t even the real issue, “Doonesbury” never was funny, the problem was that you mocked a Mom and her autistic son because you believe you “know” better why her child is autistic. When you took on Jenny McCarthy you took on all of us. We all have similar stories and we all have children who suffered horrific reactions to multiple vaccinations.  Apparently Gary Trudeau finds that amusing. Gary I challenge you meet with us. Step away from the magic marker table, Gary. Come out of hiding and tell us why you know our children better than their parents and how you became such an autism causation expert.

Katie Wright is a Contributing Editor for Age of Autism

Why Is IACC's Sharon Lewis Against Protecting Against Autism Spectrum Child Mortality?

DrownBy Katie Wright

Sharon Lewis continues to astonish me. In the history of IACC I have never before heard from such an insensitive and compassionless member as she. Ms. Lewis, who is not a scientist, not a clinician, not an autism specialist and not the parent of an affected child, represents the the Administration for Developmental Disabilities at HHS. Ms. Lewis is hostile to towards IACC’s proposed letter to Dr. Sebelius alerting her to the alarmingly high rate of child mortality in the ASD community and is opposing an IACC program to prevent ASD child mortality. Yes, you heard correctly, Lewis is against a program to prevent ASD child mortality. The anti-wandering program in question is directed towards the needs of severely affected, often nonverbal children with autism.

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Katie Wright on the CDC Autism Prevalence Meeting

Smoke_Mirrors_Clipart By Katie Wright 

The purpose of this meeting was to bring together a diverse group of scientists, stakeholders and autism organizations in order to discuss ASD prevalence trends and opportunities for further research. This is certainly a worthwhile endeavor given the skyrocketing increase in autism spectrum disorders. Unfortunately, highly conservative groups and thinkers were over represented while parents and innovative scientists were in short supply.

Thank you to Dr. Geri Dawson of AS for opening this meeting to the public and for arranging for the meeting to be available on the internet. Dr. Rice did a nice job of re-iterating questions that were posed off mike. I received a comprehensive outline of the day’s discussion a week in advance, well done. Unfortunately some parents could not listen into the meeting after the 250 limit on listeners was reached. Maybe in the future, lines not being used, by those who reserved them, can be made available to parents on the waiting list.

Dr. Paul Shattuck and Dr. Peter Bearman gave their usual stump speeches about why the ASD increase is mainly due to greater awareness and parental age. Right. They are weirdly obsessed with this parental age issue. More on that later. Bearman also hypothesized that some of the increase could be the result of a virus.

After that we heard some insightful presentations from Dr. Durkin and Dr. Hertz-Picciotto.  Durkin spoke about the massive unexplainable increase in ASD between 1994 and 1998. Durkin found that maternal and paternal age were minor contributors in the rise of autism, explaining only 3-4%.

Dr. Hertz-Picciotto specifically studied the 600% increase in ASD cases from 1990 to 2001. Dr. H.P. argued that surprisingly little of the astronomical rise of autism could be explained by better diagnoses or greater awareness. She found that maternal and paternal age accounted for just 4% of the increase in ASD cases. Clearly there are major environmental factors involved in the rise of autism that must be identified.

Then we heard from scientists studying Parkinson’s, asthma and cancer. None of these diseases have experienced the meteoric rise of autism. It is also worth noting that vast majority of people with these diseases marry and have children. 99% of people with autism (I do not know about Asperger's) do not procreate. Autism’s number should be falling, not rising.

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Katie Wright Reports on the IACC Meeting: Common Sense & Compassion in Short Supply

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By Katie Wright

Sorry everyone that this IACC post is so late. I honestly had a tough time getting through all 6 hours. 

At the previous IACC meeting Lori MacIlwain and Wendy Fournier of the NAA made a devastating presentation about ASD child mortality. An incredibly brave Mom, Mrs. Sheila Medlam spoke so eloquently about her child’s death due to wandering. Shelia spoke for so many of us when she described how quickly an ASD child can disappear. Her son, like mine, had no awareness of danger and almost no safety instincts. To make matters worse, nonverbal ASD children are highly impulsive and cannot respond when searchers are calling their names. Mrs. Medlam urged the committee to make safety an IACC priority- particularly by providing interested families with potential life saving track devices and to aid in the support and training of first responders, teachers and other community service providers.

It seems like we read about the tragic death of an autistic child on a weekly basis.  As Geri Dawson pointed out these children had good parents, responsible care givers, it is extremely difficult to keep these children safe literally every moment of the day and night. These families need our help. This should be an EASY issue for IACC to support. I mean does it get more black and white than choosing to do something or choosing not to do something to help prevent horrible tragedies?

But among certain IACC members common sense and compassion is in sort supply. I was astounded that a parent of an ASD adult, like Ms. Ellen Blackwell did not support this measure. I imagine her son is verbal and relatively high functioning but surely she must understand that most ASD children are not so fortunate? Ellen insisted on muddying the waters by demanding wandering prevention to be linked with the ending of the use of restraints. This is a valid objective but a different one. I was astonished at Ms. Blackwell’s continual nitpicking of the wandering provision and her refusal to support this measure. Shameful.

Ari Ne’Man is just 22. He is a brilliant young man. But he is not a parent and has never felt the awesome responsibility of parenting and protecting a child with a form of autism so disabling, so unlike his own. Ari does a great job advocating for the interests of his community but I think his intransience on this issue was both hurtful and unnecessary.

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The Beetlejuice World of Brian Deer

Beetlejuice_25_-_Adam_makes_a_scary_face Seems like someone must have shouted "Beetlejuice! Beetlejuice! Beetlejuice!" recently returning Brian Deer to the scene. He certainly thinks he's the ghost with the most.

By Katie Wright

Like many of you, I am sure, I am so sick of this “Lancet” business. All this whining and cataclysmic carrying on about a 13 year old pilot study which made absolutely no conclusive claims. As if any of this nonsense changes that fact that 70% of ASD kids have GI pain and almost 50% of kids are now developing normally and regressing into autism. If only all of THIS were a hoax! If only I could say to my son, “snap out of it kid, I am on to you!” How Christian pulled off the incessant diarrhea I am not yet sure…There must have been some fraudulent trickery involved. Maybe Brian Deer needs to investigate!

Speaking of Brian Deer, what is with this oddball character? Why do I cringe when I watch him on TV, even with the volume muted? Is it his bizarre persona, the weird facial expressions, the constant blinking? Deer has such a creepy je ne sais quoi quality about him. He is obsessed with Dr. Wakefield, like a crazy jilted suitor.  Deer reminds me of the protagonists in those old “Lifetime” movies about stalkers.  He non-stop rants in his interviews, talking about himself as much as Wakefield. Deer’s interviewers all have the same quizzical expressions when watching this guy in action. You know they are probably thinking, “this guy is really strange. Why didn’t my producers warn me?”

I love how we are supposed to believe THIS guy, not the parents whose private medical records his absconded with to his apartment, or lair, as the case may be. Deer can really dish it out, calling Dr. Wakefield all kinds of names, accusing him of causing worldwide panic, alleging that his 1998 pilot study has contributed to hundreds of deaths. Yet in turn, Deer complains about the mean autism Moms, these housewives, who have the nerve to ask him who is financing his “investigations.” These mothers shout at me, he complains! They call me all kinds of names! What a baby. Maybe it is their children who are the victim in all of this, rather than Deer’s fragile ego.

When asked about why autism is rising or what is causing autism. Deer responds, “I don’t know, I am not a doctor.” Fair enough. Yet why did the British medical authorities hire this squirrelly “free- lance” journalist to “investigate” and evaluate the complex medical records of sick children with autism? Insane. Why doesn’t our government hire Jane Brody, who writes a health column for the NYT, to investigate brain surgery frauds and report back to the NIH? Why hasn’t the Surgeon General hired Emily Smith (a good detective!) of “Page Six” to investigate hoax heart valve surgeries? Anyone is free to “investigate” and report anything they want but our government doesn’t commission wacky reporters off the streets to evaluate children’s confidential and complex medical histories.  Can you even imagine how many personal injury lawyers would retire for life if they worked on this case here in the U.S.?

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Katie Wright on CNN's Dr. Gupta Autism MMR Story

Off-target By Katie Wright

I remember when the Poling verdict was released Dr. Sanjay Gupta was on CNN discussing the ruling. He appeared completely shocked. More importantly Gupta had actually read the judgment and seemed astonished by the content. Like most doctors he had not believed that over vaccination could ever result in a regression into autism. The Polings case put the reality of vaccine-induced autism into stark relief. Gupta could not find fault with the ruling and acknowledged that Hannah’s father was a neurologist, obviously someone who grasped the complexities of the situation.

I have seen that look so many times. It is a plaintive and sad expression. It happens when someone actually reads the studies and says to themselves, “What? The Danish Serum Institut only counted the out patient ASD population in the prevalence pre test but then counted the out and in patient population (which is significant in DK) in the post test yet did not acknowledge that in there discussion and summary.

The Serum Institut really wanted to bump up those numbers as if to say, “look autism is rising as fast in DK as in the US - and after we made our vaccines safer so that cannot be a factor!” They also wanted to provide fertile ground for the massive American funded ASD epidemiology studies of Danish autism. The American autism epidemic has been a tremendous financial boon for the Danish Serum Institut, the University of Aarhus and assorted thieves within the scientific community (I am not merely casting aspersions here, Dr. Poul Thorsen really did steal our research money for personal spending sprees, check it out online). The rate of ASD in DK is nowhere near as high as in the US. And most interestingly the vast majority of ASD Danes are relatively HF/ Asperger’s. They have a minimal problem with regression and/or medically affected/ induced autism. When my mother in law talks to fellow Danish parents and grandparents about her grandson’s autism they look at her in disbelief. They have no idea what she is talking about. Most Danish autistic kids were “different” from birth, nearly all verbal and no ASD child she knows has these weird GI symptoms.

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Age of Autism Awards 2010: Dr. Paul Offit, Denialist of the Decade

Denial_hole_in_ground By Dan Olmsted 

Why bother to call attention to Dr. Paul Offit, the vaccine patent-holder who has led the attack on the idea that vaccines have anything to do with autism or any of the myriad of other ailments afflicting this generation of American children? Well, because other people are paying attention -- including the nation's pediatricians and the mainstream journalists who need to start calling him to account. Offit has a new book out -- "Deadly Choices: How the Anti-Vaccine Movement Threatens Us All." Here's the question doctors who recommend him to nervous parents, and parents unsure what to think, and journalists who interview him, need to ask: Why is Offit transparently opposed to ever studying the health outcomes of vaccinated versus unvaccinated Americans, even as he acknowledges that vaccines have a long history of causing serious side effects?

While his last book, "Autism's False Prophets," focused squarely on the disability now afflicting 1 in 100 children, Offit branches out here to deride those who have any concerns whatsoever about the safety of the current vaccine schedule. There is plenty of sympathy for parents of children who have died of infectious diseases, but perfunctory dismissal in cases where parents blame vaccines. 

Thus Michael Belkin, whose daughter Lyla died after her hepatitis B shot, is treated as a gullible gadfly, goaded by Barbara Loe Fisher into heading "the Hepatitis B Vaccine Project at her National Vaccine information Center. Soon Belkin, a Wall Street financial adviser, was everywhere" -- everywhere being the CDC and Congress, which is exactly where he should have been as a citizen and parent who believes that Hep B is a dangerous and unnecessary childhood vaccine that killed his daughter. Sniffs Offit: "Despite Belkin's certainty that hepatitis B vaccine had caused his daughter's SIDS, study after study failed to support him."

Parents of girls who died after Gardasil vaccination get similar treatment. The idea that Gardasil is dangerous is "a contention refuted by careful study" and "established science." 

And chickenpox vaccines are critically important because chickenpox can lead to shingles, "one of medicine's most debilitating diseases. Shingles is so painful that it has at times led to suicide. And shingles doesn't only affect the skin; sometimes when the virus reawakens it causes strokes, resulting in permanent paralysis. Chickenpox is a disease worth preventing." Absent is any acknowledgement of the evidence that the vaccine itself, by reducing cases of simple childhood chickenpox, has led to a big increase in shingles by removing the protective immunological "bump" those who already harbor the virus receive when they are re-exposed.

Hannah Poling and the government's $20 million concession that vaccines resulted in her autistic regression? Not mentioned. Billions paid out by vaccine court for all sorts of injuries over the past 20 years? Well, vaccine court is a strange place ...

 

Offit and baby no $ Anyone concerned about any of these things fits Offit's definition of anti-vaccine, because vaccines don't cause any of them, because Paul Offit says so, a solipsism that is really quite breathtaking: "[B]ecause anti-vaccine activists today define safe as free from side effects such as autism, learning disabilities, attention deficit disorder, multiple sclerosis, diabetes, strokes, heart attacks, and blood clots -- conditions that aren't caused by vaccines -- safer vaccines, using their definition, can never be made."

Yet Offit himself yields an amazing amount of ground by describing unsafe vaccines -- including early polio shots and a rotavirus vaccine that was the immediate predecessor of his own. His technique is to situate all this as historical, part of the triumphant march of progress into the bright sunshine of vaccine safety. Here's a description I find especially astonishing: "When Barbara Loe Fisher burst onto the scene, several vaccines had serious side effects, every year causing allergic reactions, paralysis, or death. Public health officials and doctors didn't hide these problems. But they didn't do anything to correct them, either. And most parents had no idea they existed."

Public health officials did nothing to fix vaccine problems that led to paralysis and death? And parents didn't know about it? Is this not an indictment of the medical industry, and an unintentional endorsement advocates who have worked to remedy it?  Does it not argue that at least some of the time parental observations may well be correct, an early warning system of the first order? Well, no, because apparently those things no longer happen -- to say otherwise, in Offit's parallel universe, would be anti-vaccine conspiratorial quackery. 

Jenny and evan Much of the book is a score-settling screed against anyone who's ever criticized him or vaccine safety surveillance, including Fisher, Jenny McCarthy and J.B. Handley. So it's no surprise that his "can't be done" argument against studying unvaccinated populations for any untoward outcomes arrives in the middle of an attack on Handley. Offit quotes J.B.'s comments on a Larry King segment in April 2009: "Larry, we have no idea what the combination risk of our vaccine schedule looks like. At the two-month visit, a child gets six vaccines in under fifteen minutes. The only way to test that properly would be to have a group of kids who get all six and a group of kids who got none and see what happens. They don't do that testing. They have no idea."

Offit's comment: "Handley was asking for a study of vaccinated and unvaccinated children. One result is certain: given recent outbreaks of Hib, measles, mumps, and pertussis, no vaccinated children would suffer and possibly die from preventable infections. It would be, of course, an entirely unethical experiment. No investigator could prospectively study children who are denied a potentially lifesaving medical product. And no university's or hospital's institutional review board worth its salt would ever approve such a study." 

Offit goes on, outrageously, to compare Handley's proposal to the infamous Tuskegee experiment in which doctors withheld treatment from black males suffering from syphilis in order to study the natural course of the disease. 

P-LEEZE. No one I know of is suggesting that a study of unvaccinated children deliberately withhold vaccination. Rather, there are growing numbers of never-vaccinated children in America -- a fact Offit acknowledges with dismay -- and plenty of families willing to participate in such a study. State governments have vaccine waivers on file for public school attendance that are another obvious source of non-life-threatening data.

The real problem for Offit is not an ethical one; the real problem is that any such study would trump all the self-interested industry and CDC studies that never manage to include never-vaccinated chldren as a control group. Informal efforts to do that -- by myself, J.B.'s Generation Rescue and others -- have pointed toward less autism and asthma, and been met by the medical establishment and its sycophantic sock puppets with an absolute frenzy of denial and misdirection.

In our book, "The Age of Autism -- Mercury, Medicine, and a Man-made Epidemic," MarkAge of Autism_cover quote (3)  Blaxill and I discuss this aversion to doing the obvious. "A very simple test goes right to the heart of the vaccine controversy: What is the difference in total health outcomes, including autism, between vaccinated and unvaccinated populations? We would argue that we've uncovered a number of natural experiments in human populations that suggest we should be seriously concerned over the ever-increasing load of childhood vaccinations, especially in the United States. ... Oddly, when it comes to doing such studies in human populations, and studying the autism levels in the Amish, the homeschooled, or philosophical objectors, vaccine industry proponents resist mightily. Conducting human vax/unvax studies in existing unvaccinated groups would be so fraught with methodological problems that they are 'retrospectively impossible.' As for controlled studies, they would be so burdened with permission problems that they would be 'prospectively unethical.' In short, the resistance to the proposal to do vax/unvax work has not only taken the attitude that 'we already know the answers,' but 'we should not seek to know.' It's pretty hard to make scientific progress in the face of this kind of epistemological nihilism."  

I am begging, on bended knee, that pediatricians quit putting Offit on a pedestal, and that mainstream journalists do their job and ask him why he is so averse to any study that involves the health of never-vaccinated children. Don't let him call you "anti-vaccine," and don't let him change the subject to the quite thoroughly separate issue of preventing deadly disease. That's an important topic, but there is room at the table for both effective public health policies against disease AND a fearless examination of whether today's vaccine schedule contributes to chronic health problems -- whether Paul Offit denies it or not.

--

Dan Olmsted is Editor of Age of Autism

 

 

 

Katie Wright on the Mt. Sinai Autism Conference Part II

Miss the mark Read Part I of Katie's review of the Mt. Sinai Autism conference "Bizarre and Disappointing".

By Katie Wright

When last we left off Dr. Boyle of the CDC had been recounting ten years of “tremendous progress” in autism research.  I know, I know…..Ten years ago autism affected 1 in 250 children, now autism affects 1 in 110, and 1 in 70 boys.  It is as if these people feel no sense of urgency at all.

However, Mt. Sinai almost redeemed the day with the exceptional presentation of Dr. Irva Hertz-Picciotto.  Dr. HP was phenomenal. Although HP is neither a parent of an affected child nor a clinician she speaks about autism as a disease and autism as it affects human beings tremendous great compassion and insight. I hope the other presenters took notice of HP’s ability to connect with the audience while addressing the cutting edge autism research. HP was the only presenter to discuss exciting new just published environmental science. She presented a truly ground-breaking study connecting incidence of autism with closeness to a freeway. The argument for the substantial influence of environmental factors in the growth of ASD grows stronger by the minute.

All previous speakers, Dr. Landrigan, Dr. Birnbaum of the NIEHS and Dr Coleen Boyle of the CDC spoke in great excess of their allotted time. After almost 3 hours of lectures I attempted to ask a simple question and got shut down by Dr. Phil “No questions!” Landrigan. This was almost funny because we had just heard from Birnbaum and Boyle, at great length no less, about how essential stakeholder input is into their work. On an on about how they partner with the families and the critical nature of the ASD’ community’s input.

I guess that commitment was operating in suspension at Mt. Sinai?

One of Dr. HP’s first remarks was that the autism research community needs to talk less and listen more. What a revelation! Thank God someone said it.  She discussed the shameful history of autism and how it was standard practice for physicians and researchers to blame the parents for their ASD child’s condition until the late 1970s.  HP was the ONLY presenter to acknowledge the tremendous suffering of those acutely affected and how autism can devastate families. HP discussed how seriously autism can challenge the family system and how siblings are impacted. I was sitting nearby a group of young doctors and medical students. They were furiously taken notes at this point. It is vitally important that any autism research discussion spend just a few minutes giving the audience the appropriate human context of this disease. No one else did that.

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CDC “Stakeholder” Collaborations

Not my problem Katie Wright

At Wednesday’s Mt. Sinai autism and environmental science conference the audience was subjected to an endless oration about the CDC’s “Learn the Signs” pr campaign as well as a vague discussion of “CDC/ stakeholder collaborations.” What either of these subjects had to do with environmental toxins is still unclear to me but then again I was woozy 45 minutes into the lecture.

How nice if it were true that the CDC has reached out to advocacy groups. However, I had no idea what Dr. Coleen Boyle was speaking about. CDC/ ASD family projects? Who? What? Where? When? If I had been allowed to ask questions we might have been able to learn something. But thanks to Dr. Phil Landrigan for barking “NO questions!” at me, we never got an answer.

Until now. Thank you Laurette Janak for attending a CDC “stakeholder” partnership program starring Ms. Alison Singer. (listen here) Ms. Singer as you may remember had to leave her position at Communications Director of Autism Speaks because she unable to represent the community of families. Ms. Singer has a daughter who evidenced signs of autism from babyhood. Her lovely daughter Jodie was born with a form of classic autism. Jodie never regressed, never had adverse vaccine reactions, and never developed encephalitis, febrile seizures, GI disease or chronic autoimmune dysfunction.

Ms. Singer has no medical training and, unlike many of us, has been fortunate not having spent weeks to months of our lives taking an ASD child to the emergency room for seizures, blocked bowels, endoscopes, IVIGs, muscle biopsies, EEGs….Ms. Singer has a healthy ASD child. She now runs a small advocacy group who membership information has not been made public. Dr. Paul Offit, a vaccine patent holder and millionaire many times over thanks to his vaccine patents serves on her board and helps fund the organization. I do not believe this fact was disclosed at this CDC funded vaccine education workshop.

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Katie Wright: Mt Sinai Autism Environment Conference Bizarre and Disappointing

Off-with-her-head “No questions!” bellowed Dr. Phil Landrigan.

“We just listened to a very lengthy speech and I would like to ask a question,” I said into the microphone planted in the aisle of the auditorium (ostensibly so people COULD ask questions.)

“No questions! We are running behind! We don’t have time!” Dr. Landrigan replied.

OK, but whose fault is that? Why is this guy yelling at me? Is it my fault he talked three times longer than he was scheduled? Is it my fault he allowed Dr. Boyle from the CDC drone on for almost an hour, double her allotted time?

The Mt. Sinai conference environmental science in autism and learning disorders was both incredibly bizarre and disappointing.

Sorry to Kristen, Mary, Lisa, Kim, Katie and everyone who got babysitters and traveled from outside the city to attend. If I knew the day was going to be one long diatribe, with no time for questions or discussion I never would have encouraged you to attend.

Initially I was really encouraged that Mt. Sinai, totally AWOL in ASD environmental research was holding an environmental science workshop. Great! I was also very pleased that Autism Speaks was a sponsor and made it possible for parents to attend the event for free. That was a terrific idea.

When I arrived I read the agenda. Dr. Landrigan (good), Dr. Linda Birbaum form the NIEHS (OK), Dr. Coleen Boyle from the CDC (why- they are like the same person), Dr Irva Hertz Pinchero (great!), someone from the National Children’s Study….lots of bureaucrats.

Dr. Birbaum gave a great sales pitch for the NIEHS. This committee, that committee, agent orange, gene + environment….Lots of nonspecifics. To be fair Birbaum did do an excellent job in conveying the dangers of anti-flammable toxins in our clothes and mattresses. She illustrated the ubitiquous nature of unregulated toxins well. Birbaum spoke about the fact that pesticides for commercial use need not undergo ANY consumer safety testing and how that had changed in Europe but not in the US.

Birbaum was conveying a sense of interest that I normally find missing at IACC. But then she got to the Somalis. Almost 3 YEARS ago Lyn Redwood raised the issue of the Somali ASD cluster in Minneapolis. The autism community had urged the CDC and NIEHS to thoroughly investigate potential environmental triggers behind this cluster. Somalis have 17x the rate of ASD as do non Somali Minnesotans! Most Somalis point to over vaccination as the trigger.

What has the NIEHS done about this astounding Somali cluster over the past 3 years- a whole lot nothing. But today there was talk of NIEHS’ vague partnerships counting the population as well as other unspecified activities. OK, I will believe that when I see it. Birbaum would not say “cluster” nor did she share the fact that they have 17x the typical rate of ASD. No Birbaum said “there seems to be an autism issue…more autism among this population…something they are seeing in Sweden too.” What I inferred from that comment was; one: a clumsy effort to minimize this thusfar ignored prime opportunity for environmental science research, and two: a deliberate effort to downplay the idea of a cluster and three, pass the buck to Sweden.

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IACC Part 2: The Somali Autism Clusters and More

Sos-500 By Katie Wright 

The afternoon started with Dr. Gerald Fischbach, the scientific director of the Simons Institute. Gerry approached Wendy Fournier after our community meeting with Dr. Francis Collins in order to learn more about biomedical treatments. He was very friendly and genuinely interested in biomedical interventions. Maybe this is a sign of change? One wishes that given its tremendous resources that Simons would have a more diverse investment portfolio. They lead the nation as a private nonprofit in brain and genetic ASD research but conduct almost no biomedical treatment or environmental research.

Dr. Steven Scherer of the International Genome Project spoke about “Translating Genetic Discoveries into Diagnostics.” As I stated earlier translating needs to begin at home by working with the community of families. My husband and I had to travel to 4 states to get a diagnosis for my son’s co-morbid medical problems. How can this diagnosis discussion take place without representation from national ASD advocacy groups? Don’t the researchers need to know what kind of diagnostics our kids need, barriers currently in place, problems with hospital care and testing issues? Wouldn’t it be helpful to hear from a diverse body of parents, many of them doctors themselves and parents of medically affected ASD kids? Dr. Scherer said stakeholders were in attendance but no one I know from national advocacy, research and service orgs like NAA, SafeMinds, Generation Rescue or TACA who was invited. These groups are on the front line, helping families and kids with diagnoses, medical issues, physician referrals, interpreting laboratory results and providing cash grants everyday.

I heard a lot of talk about CNVs and the value of generating information for genome research and the importance of generating research for laboratories but almost nothing about diagnostics other than early identification. Yes there was some discussion about a possible genetic test for GI disease but we already have SO many incredible GI research proposals just dying on the vine! I am dying to see more of Dr. Arthur Krigsman’s GI research on clinical interventions.  I would love to see an investment in Julie Matthews pioneering work in essential nutrition for the ASD gut. Over 1 million ASD people are suffering from GI disease. They don’t need a genetic test to confirm what they already know, they need to see research dollars invested in biomedical interventions, today.

I just do not understand David Armstrong. But then again I don’t understand much about the National Institutes of Environmental Health and their attitude towards autism and autism research.

In the group discussion Lyn Redwood brought up the need to more energetically investigate the Somali autism cluster in Minneapolis. Lyn asked the Dr. Coleen Boyle, the CDC representative why more isn’t being done to figure out what is going on?

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Katie Wright on IACC

Review-cover By Katie Wright

I apologize to Ms. Susan Daniels, the Communications Director of NIH’s autism research programs. In the past I have been critical of IACC’s transparency regarding access to public meetings. The situation has greatly improved so thank you Ms. Daniels. I appreciate the fact that IACC meetings are quickly archived and available for viewing any time. The meeting agendas, slides, list of speakers are also publicly accessible for downloading. The e-mail reminders regarding upcoming dates and times of meetings are very helpful as well.

So many autism meetings remain inaccessible to the public and involve only token stakeholder representation.  The NIEHS’s recent environmental science meeting has not been archived on their site nor have they made the DVD available for public viewing elsewhere. In September the NIH and Canadian NIH and Autism Speaks sponsored a conference entitled “Translating Genetic Discoveries into Diagnostics.” Once again this meeting was not publicized, webcast or archived for public viewing. What stakeholders were involved, if any? Were family member allowed participate or just serve as audience members? Were representatives from national autism service/ research organizations, such as the NAA, SafeMinds, Generation Rescue and the Autism Society of America invited?

I hear so much talk, talk, talk about how important stakeholder input is but how about “translating” those promises into actual action.  “Translating” needs to start at home.

 Scientific organizations must prioritize community wide (press releases on all organization websites, Schafer Report, placing an ad on AoA or other community online newspapers…) notification of meetings, create archived webcasts and energetically pursue public comment. We also really need to see some federal autism meetings outside of the DC area! If stakeholders can travel to IACC or NIEHS, why shouldn’t IACC travel to NYC or LA once or twice and hear from the families in the big cities?

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