Why Worry? The NIMH Ignores IACC Report Anyway!

By Katie Wright

Normally, this time of year I read and re read the IACC Autism Research Strategic Report. The report highlights autism research priorities that the committee believes the NIH should fund. Usually, I am aggravated by the endless over emphasis of basic science and recommendations for the millionth “learn the signs of autism” research (redundant if anything ever was). For the record there are tens of thousands published studies on the early signs of autism, we do NOT need more, we need physicians to read what exists! Same problem for early intervention research, there are thousands of published studies. The problem is lack of service providers, not lack of research.

However, over the past few years, I have been pleasantly surprised by new IACC research recommendations about the need for treatment for ASD/ Gi disease, autoimmune dysfunction, the need to study housing options, the child to adult transition and self-injurious behaviors. For the record, medical research must be conducted by GIs or autoimmune experts, NOT psychologists or psychiatrists, as it often is. These are medical, not psychodynamic, problems.

Despite improved IACC recommendations, funded NIH autism research remains EXACTLY THE SAME. The NIH has completely ignored the IACC Strategic Plan. The same universities and researchers at Yale, John Hopkins, UCLA, UCSD, Emory, Univ of Washington etc. all receive the bulk of the funding to do the same antiquated research that NO stakeholders or taxpayers (do not want their money wasted!) want done. Tragically, the vast majority of the NIH funded research is wasteful, redundant and frankly, pointless. There is a reason families feel like no progress is being made. It’s because NO progress is being made.

I seriously doubt any of the mystery men and women (have any of them actually met a kid like mine? Doubt it!) secretly choosing autism grants even read the IACC report! There is certainly no evidence they have! New research recommendations are wholly ignored and the same ridiculous multimillion $ eye gazing, rare genetic variant, genomic boondoggles are fully funded year after year.

For example, let’s look at Yale’s MacPhartland’s Autism “biomarker” project. Yes, biomarker in paratheses because it is too ridiculous to be taken seriously! The “biomarkers” include eye gazing and interviewing! MacPhartland excludes all severely ASD kids, all children with epilepsy and Gi problems from his “biomarker” study!  How can you develop ASD biomarkers after excluding half the ASD population?? It’s so stupid, it’s painful. Yet, this ridiculous project will rack up nearly 10 million dollars!

Autism Speaks funds very conservative research. However, even AS no longer funds “rare genetic variant” research! Previous AS Science Director, Dr. Frazier believed it was not fruitful and, frankly, irrelevant. Fragile X, Tuberous Sclerosis, Timothy Syndrome share some overlapping symptoms with autism, but they are not autism as lived by 99.99 ASD people. The percentage of ASD people supposedly, living with a rare genetic variant is grossly inflated and most cases do not fulfill DSM dx criteria. I have never even heard a stakeholder ask for more of this research, but wow, NIH loves to fund it!

The following are just some of last year’s NIH “Autism” grants that neither apply to, nor help anyone with autism. Timothy Syndrome study, $350,000, FX Gene Knockouts $450, 000, 3D Model of Genetic Mutations, $500,000, Fragile X $500,000, Mental Retardation and FX $450,000, Mitochondria and FX, $600,000, genetic variants $1.2 million. In total probably $15 million of taxpayer money wasted on this dead-end research that neither stakeholders nor IACC wanted funded. It is appalling.

By Katie Wright

I didn’t always feel this way. In college I enjoyed studying the ACLU and believed their battles for free speech were brave and of monumental importance. They fought to allow people espousing the most unpopular views the right to express their opinion. The ACLU fought and won to end the ban inter racial and LGBTQ marriages. So many amazing accomplishments.

 To me the ACLU meant “Don’t tell me how to think, how to express myself (peacefully, of course), where to worship, or not worship, or what to do not what to do with my body!” Don’t those sentiments epitomize America?

Like most Americans I was shocked and disgusted by the ACLU NYT editorial applauding vaccine mandates.  Yes, vaccine mandates are vaccination by force because if the punishment is losing your job, there is no choice at all. The idiots who wrote that letter seriously misjudged their own ACLU members. The negative comments to the ACLU editorial ran about 100 -1!

Apparently, the ACLU fully supports restaurants and stores refusing to serve Black customers. The ACLU also fully supports the immediate firing of unvaccinated Black Americans. What advocacy! You are hitting it out of the park ACLU!

The fact almost 50% of Black Americans in NYC are being refused service at restaurants conjures up some ugly memories, doesn’t it? But the ACLU says bring back Jim Crow, I missed you pal!! Turn the unvaccinated Black customers away!

The Black community has valid reasons to be concerned about vaccine safety. Historically, the medical community has mistreated Black patients and denied them adequate care. But it is the Black population, not the medical community, being punished today. Makes sense, right?

Happy Saturday! Grab a cup of coffee and maybe sit down for this one. Katie Wright unleashes the frustration so many of us feel.  Thanks to Katie for knowing that we are the only website that would dare to run this. We don't shy away from controversy (we cut our teeth on it) and we can be as belligerent as we need to be - no sponsors feathers to ruffle!  It's a freedom no one else has. I like it.  Kim

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As I listened to Biden’s speech I heard my Mom’s voice in my head. “Young lady, I do not like that TONE in your voice!” I received the “tone” remark whenever I responded to her I an obnoxious manner. Biden’s speech about his draconian vaccine mandates was churlish, mean, counter productive and full of “tone.” The president isn’t a king, he works for us. Our country is divided enough right now, the last thing a president should be doing is pitting Americans against each other. In fact, NO politician should speak to the American public in such a nasty, divisive manner.

I don’t need my advanced degrees in psychology to know that that shaming and blaming is the least effective way to get people to change their minds. In fact, shaming and blaming only serve to entrench the belief or behavior another person is seeking to change. Who is the idiot who wrote that nasty mean spirited speech? It completely backfired.

Biden’s simplistic understanding of covid and vaccination is cringe-worthy. It’s not a black and white matter of unvaccinated vs. vaccinated, as he presents. Over 50 million Americans HAD covid and possess the antibodies! They do not need a vaccine, and like any rational person, do not want a medical procedure they do not need. Yet, now, people who possess immunity, and natural immunity vastly superior than vaccine induced immunity, will lose their jobs for declining a vaccine they don’t need? I want to see one doctor defend this idiotic policy. Never mind that, I want one American to defend such a stupid and cruel law.

President Biden, instead of blaming unvaccinated people who have, literally, done nothing wrong, take responsibility for the mess YOU created. At a time when we desperately need fresh, innovative leadership, you kept that 100 year old political hack Dr. Fauci in charge of covid efforts. YOU kept the ineffectual 100 year old Dr. Collins in charge of the NIH. Fauci lied to the American people about origins of covid and illegally granted (laundered)  millions of NIH money to “Eco Health” to perform gain of function research in Wuhan. Fauci says one thing to the public and the exact opposite in his NIH e mails. President Biden, you kept this hack in charge when you know he is a liar who has lost the respect of the American public.

By Katie Wright

Who exactly was sitting at home thinking to themselves, “I cannot decide whether or not to vaccinate my child until Joe, Kerry and Kathleen Kennedy tell me what to do!!!!” Neither Joe, Kathleen nor Kerry is a vaccine expert, an autism expert, a published author on vaccine science and neither one has spoken at length with parents of vaccine injured children. Nevertheless, these three self styled vaccine science and autism pros felt compelled to weigh in on the subject in which they have no expertise, shamefully disparaging their brother in the process. 

I know a little about this. Many years ago my parents, Bob and Suzanne Wright, publicly denounced me and my concerns about vaccine safety. It was a big mistake and it lives forever. Siblings, colleagues, board members, friends and family members were horrified. Many disagreed, some vehemently so, with my vaccination concerns but all agreed a public condemnation of a family member is a base betrayal of what family means. We reconciled but was long, long, road getting there. 

In the case of Joe, Kathleen and Kerry Kennedy the needless and shameful public betrayal of their brother is impossible to understand. Did they actually believe they would convince anyone to vaccinate? Could they be that self important? Who knows? But I guarantee you that their sloppy op -ed, filled with errors, did not convince ONE parent to vaccinate their child. The gist of their post is that in many countries (notably not the USA) many children suffer and die from communicable disease. Neither Joe, Kathleen nor Kerry did their homework. Bobby Kennedy speaks about the American system of checks and balances in vaccine safety and the lack of independent oversight in the vaccine approval process. In what way does Americans asking for independent vaccine safety oversight create a measles catastrophe in third world countries? It is the same kind of ridiculous logic applied by those who argue against the teaching sex education in schools “because it will make children have sex.” Untrue and flat out dumb.

Joe, Kerry and Kathleen are all emotion and no logic in their post. They go on and on and on about the history of measles, smallpox and the “dedicated professionals” at “WHO” and the NIH. I know, I know, it's both funny and sad. First of all, WHO is basically employed by Pharma! WHO never meet a vaccine they didn't like! WHO still actively campaigns for the continued use of mercury in vaccines because it’s cheap. The fact that mercury is a well known and potent neurotoxin bothers them not in the least. Think about this...the Soviet Union banned thimerosal in 1990! The Soviet Union, a nation that doesn’t exactly have high consumer safety standards, banned thimerosal 30 years ago! But in countries and entities owned by Pharma, like the USA, the subject of mercury in vaccines is off limits. If one dares to question vaccine safety in the USA and one is immediately labelled a flat earth, anti science heretic whose only goal is to see the maximum amount of children die from contagious disease! And they call us emotional! The great irony is that ALL research on the subject shows that parents who have concerns about vaccine safety are the most highly educated. So education is the enemy?

By Katie Wright

I recently watched Dr. Shafali Jeste’s* (see bio at end of this post) of the UCLA Jeste Lab for Autism Research and Treatment SFARI presentation “On the Road to Precision Health: Brain Based Biomarkers.”

Dr. Jeste and partner Dr. Dan Geschwind believe they will be able to phenotype and treat ASD people via EEG. Everything about that is crazy. Listen, these are brilliant scientists who sincerely want to help the ASD community, however, they are doing everything wrong. This is what happens when researchers are insulated from the wider community.

It can be very difficult and painful to admit you have been wrong. Believe me, I know something about this. When Christian was an infant, I laughed at a friend of mine who advised me to to give Christian one vaccine at a time over a spread out schedule. Guess whose child had severe adverse vaccine reactions- not hers. The neurologists and geneticists have everything at stake in the “autism is a heritable brain based genetic disorder,” paradigm. Not too long ago researchers including Jeste argued that we would eventually be able to phenotype everyone with autism via genetics. 20 years and almost a billion dollars later, no success. Not only no success phenotyping via genetics no success creating treatment via genetic models. It has been a disaster.

For at least 15 years geneticists have been promising “precision therapy” and “targeted treatment.” These ubiquitous buzzwords are no bereft of meaning. In 2007 I was directed to take Christian to genetics specialist for “targeted treatment.” Sounds good, right? The problem is there is nothing wrong or unusual with his genes, nor the genes of 90% of people with DSMdx autism. A parent may be told that their child this unusual gene or that deletion, yet plenty of non ASD people have those genes. Genetics tests often show vulnerability but almost never causation.

This is because there are no “autism genes.”

There are genetic susceptibilities sure, but autism is not like Downs syndrome. Autism susceptibility genes are like alcoholism or obesity genes. One can be born with a vulnerability to a disorder or disease but it does not manifest itself without an environmental trigger. No one goes to bed 150lb and wakes up 250 lbs- surprise you are obese! A person who never drinks alcohol can never be an alcoholic. It takes a genetic predisposition, a family history and exposure to the environmental trigger for obesity, alcoholism and autism to develop. In the case of autism, there may be no family history of autism but a genetic vulnerability to autoimmune diseases. Parkinson's, Grave’s disease and diabetes, for example, feature prominently in the family history of ASD people.

Note:  Thank you to Katie Wright for slogging through IACC's meetings. How she does it we'll never know!  The Next IACC meeting is January 17th.

By Katie Wright

The 11/17 Inter-Agency Autism Committee meeting began with the CDC’s presentation on SEED, their autism “research” program. That’s right, laughs front loaded at this show. Over the past 14 yrs SEED has spent approx. $10 million and has published about 5 autism studies. The sad, sad (and I mean that in terms of value to the ASD community) research they presented yesterday was in exercise in irrelevance, govt. waste and amateurism. Throughout the bizarre presentation and even after some tough questioning, SEED Dir Dr. Stuart Shapira appeared inexplicably pleased with himself. Impossible to fathom why that was.

OK let’s start with SEED researcher Dr. Ann Reynolds. The fact that Reynolds’ presentation was on ASD/ GI science made me hopeful. I thought “Great! Finally the CDC is focusing on helping this underserved sub population.” Oh, no! I could not have been more wrong. Reynolds presented the umpteenth study merely showing that GI disease IS indeed a problem for ASD people.

Newsflash, right? Sydney Feingold did this better in his 2002 study with 1/100th the budget. The Reynolds study is lazy and unfocused. Dr. Reynolds herself seemed strangely unfamiliar with the material she was presenting, as if it were her first time seeing it. I’m not kidding. The SEED team is so inept and apathetic they gave up on collecting the research participants’ medical records “because it was too difficult.” The medical records of ASD/ GI kids is the biggest key to unraveling this issue. These children have a significant pattern of chronic infections, illness and adverse vaccine reactions prior to the onset of the ASD/ GI disease. SEED has access to ALL this precious data but choose not to work hard and to give up. So pathetic and inexcusable. Reynolds and the whole SEED team presented their information as if they were describing a sunny day in California. Reynolds had zero affect and expressed zero concern for the autistic kids living with terrible and chronic GI pain. She explained that the “treatment” for ASD/ GI disease was laxatives. What is this 1990? Even CHOP doctors state that children's’ laxatives contain a dangerous amount of arsenic and should be used sparingly, NEVER as ongoing treatment.

Why is such amateur hour leadership tolerated regarding critical medical treatment for children with developmental difficulties? How is it even possible that these doctors know so little about ASD / GI issues and offer virtually no real treatment to these suffering, disabled, young people? Untreated GI issues can lead to a refusal to eat, self injurious behavior, inability to attend to therapy, sleeplessness, constant irritability, etc. Inexplicably, Dr. Reynolds seemed totally oblivious to the seriousness of this condition. Just for starters why didn’t the SEED GI study test for IgE and IgG antibodies regarding food allergies? Why not place kids on Specific Carb Diet for 2 months and see if symptoms abate? The diet is so healthy! Fermented foods and healthy fats are much easier to digest than gluten or casein. Instead of arsenic containing laxatives try “smooth move” tea, prunes, lots of water- anything. Extra Vit D exposure and exercise are also healthy and safe ways to deal with chronic constipation. Sometimes anti inflammatories are necessary and any good pediatric GI should know this.

By Katie Wright

Alycia Halladay, PhD, recently posted an essay on the “STAT” website entitled “Let’s Focus on the Real Environmental Factors Linked to Autism.”

Dr. Hallyday made myriad factual errors in her post. Thimerosal was never “exonerated.” Ethylmercury is not harmless. Thimerosal can and DOES accumulate in some people’s brains. Many people, especially boys with a family history of immune disorders cannot efficiently excrete ethyl mercury / Thimerosal. This subset of boys have highly sensitive central nervous systems (Herbert, Deth) poor methylation abilities and suboptimal immune systems. Tragically this subset of children are unusually intelligent (Deth) and are robbed of this gift via Thimerosal induced brain damage. This cohort falls under the umbrella of regressive autism. These are infants and toddlers who reached all milestones on time, but usually ahead of schedule, yet experienced a catastrophic loss of skills and speech after a severe adverse vaccine reaction.

Essentially no one, except a fool, would knowingly and willingly allow their child, especially their infant (pre 2004 all newborns injected w Thimerosal via the pointless and dangerous Hep B vaccine), to be injected Thimerosal. Like many parents, I assumed all the Hg was taken out of vaccines in 2000, big mistake, it wasn’t. As far as Hallyday’s grossly erroneous claim: “there is no evidence Thimerosal is dangerous” please take a peek at the following THIRTY studies. There are about thirty more I could have included, but you get the point.

 A final caveat before you read the list. It is about 100x harder to get a study criticizing a vaccine published, than a study claiming Thimerosal is safe, published. The double standard is beyond belief. One might have an “I love Hg!” study rife with financial conflicts of interest, substitution errors, type I and type II errors and even basic arithmetic mistakes but almost any journal will publish it. One might have a study critical of thimersol that is perfection, checked, double checked, case controlled, blinded, extensively footnoted and still maybe one in 20 journals might have the courage to publish it. All of the published peer reviewed research listed below had to meet the the highest possible scientific bar in order to make it to print.

“Autistic child and unaffected sibling exhibit hypersensitivity to Thimerosal, “ Baskin D et al, 2013.

“Prenatal exposure to Thimerosal persistently impairs the serotonergic and dopaminergic systems in the rat brain,” Narita, M, et al, 2012.

“Suppression by Thimerosal of ex vivo CD4 T cell response to flu vaccine  and induction of apoptosis in primary T cells,” Gourgeon, M, et al, 2014.

By Katie Wright

It is ironic that when the media or medical / pharma community wade into vaccine safety discussions autism parents are frequently labelled “emotional.” This adjective is most often used to describe concerned mothers and mothers of autistic children. It is a sexist dismissal of, by and large, the real experts on autism, the people who live it every single day. Imagine the CDC labeling sufferers of prostate cancer “emotional!”  Or imagine the media implying that testicular cancers survivors are not smart enough to understand (Thunderclap!) “the science!” 

 Women, as we all know, are prisoners of their high strung emotions, unable to rationally make decisions.  The crazy thing is that the autism moms I see on TV are incredibly articulate and well versed on the specific problems with the CDC’s vaccine science. More to the point, I don’t hear these mothers making hysterical accusations or advocating for censorship.

Conversely when I hear CDC officials and pharma interest groups arguing against vaccine safety research I hear  groundless irrational assertions and inflammatory declarations.

“You (by doubting vaccine safety) are endangering children’s lives!”

“Parents who space out vaccines are selfish and irrational!”

“Do you want children to die of preventable diseases?” 

“You are placing African children’s lives are risk!”

So much for the measured and scientific approach to vaccine safety. But the hysterics don’t stop there. Oh, no! AAP spokespeople argue vehemently against more vaccine safety research because “millions of lives are saved by vaccines in Africa!” as if one thing has to do with the other.  Additionally, I resent the implication that I should just shut up about my child’s vaccine induced brain damage because the work of the Gates Foundation is more important than my child’s life. Americans are not willing to sacrifice vaccine safety to make life easier for vaccine distributors in Africa. 

By Katie Wright

No matter who you voted for in the last last election the take away message was unambiguous. Americans literally do not feel heard by our government. So guess what the new IACC Director just decided to do? In an incredibly ironic, tone deaf and boneheaded move, Dr. Joshua Gordon decided to take away the people’s right to speak at IACC public comment. That’s right. So for to those Americans affected by autism who do not feel heard or that the federal government doesn’t care about your kid - you’re not crazy. The federal government really, really does not want to hear from you.

To be specific Dr. Gordon decided to limit stakeholders to one public comment a year. That’s it. This move is foolish and unfair for many reasons. Number one, it only serves to reinforce the belief that IACC is completely uninterested in your family and your autism organization. As it stands, NIH leaders refuse, absolutely refuse, to appoint IACC nominees who truly represent actual large national autism interest groups (TACA, NAA...). Instead the NIH gives those few public IACC seats to members of an Aspergers comedy troupe, assistant-assistant professors (who are not ASD parents) of small colleges no one knows, numerous random people representing no organization at all who rarely show up and finally, masquerading as members of the “public,” NIH employees who are ASD parents but never say a word. The only chance large national groups have to be heard is during the brief public comment period.

There are no seats at IACC for those with severe autism. Indeed, severely affected children like mine cannot speak and require 24/7 care. Arranging time off work or paying the extra care taking required for a severely affected ASD child so a parent can travel (on their own dime) to an IACC meeting is a herculean task. Therefore, autism families rely on our leaders to speak for our children in D.C. and at IACC. It is bad enough that the NIH refuses to give public seats to NAA or TACA or SafeMinds but now they limited our tens of thousands of ASD families to no more than 2 minutes of representation a year? SafeMinds has members all over the country but few can travel. Lisa Wiederlight, our president, is our designated IACC speaker in part because she resides in Maryland. We have complete confidence in Ms. Wiederlight’s expertise on both the science and service issues important to our members. We do not want Lisa limited to speaking about our issues once a year. TACA is located in California. It’s virtually impossible for various CA ASD Moms and Dads to appear in person at IACC. However, they can help subsidize a trip for the organization president to speak more than once if members deem this necessary. One of the most moving IACC speakers I have ever heard is NAA president Wendy Fournier. NAA members want Ms. Founier is able to communicate their needs whenever necessary. Yet Wendy should be limited to 1 two minute slot a year?

By Katie Wright

What  is the deal with IACC member Larry Wexler, PhD, from the Dept of Ed? Until yesterday, in the five plus years I have watched Larry serve on the IACC committee I have never seen him express any sense of urgency regarding autism research or serving the autism community. But wow, yesterday Wexler on fire!

Thanks to the Gov. Accountability Office (if you are reading this I love you) IACC has been warned that they must stop recommending the funding of excessive duplication of genetic research.  The NIH has spent nearly half a billion dollars since the first CARE was passed and has almost nothing to show for it. This is because the NIH wastes an inordinate amount of our research money duplicating the same “learn the signs” and genetic research 1,000 time over. Yes, research needs duplication yet, for example, 11,000 learn the signs studies are enough, just enough.  Because the NIH grossly overfunds the area of early intervention and genetics, they have starved more promising areas of autism research (immunology, gastroenterology treatment, toxicology, vocational program research) of funds.

But rather than be grown ups about the commonsense GAO recommendation, most IACC members became histrionic in the face of this constructive criticism. THEIR feelings were hurt, their egos clearly bruised.  The GAO clearly “doesn’t understand how science works!” Insel, Battey and Wexler and other members said as they puffed out their chests.  “The GAO don’t understand duplication IS necessary in science! They are getting it all wrong!” No, IACC it is YOU who are getting it all wrong. You are failing to fund meaningful work, despite ample opportunities. The NIH rejects so much promising biomedical research in favor of the same old genetics and people with autism suffer as a result.

While discussing how they were going to incorporate the GAO recommendations into the new Autism Research Strategic Plan Larry Wexler just lost it. Suddenly Wexler appeared very agitated and raised his hand to speak. What he said next is priceless, priceless!

By Katie Wright

For almost 10 yrs now the NIH has spent close to $200 million a year on autism research. Yet I have wondered why progress towards autism causation has been so insignificant. So I broke down all NIH autism research spending to see where exactly that money is going…

2015 NIH Autism Grants

Approx Breakdown:

$38 million - Genetics

$19 million - Brain/ Brain Imagining

Interventions:

$16 million - Behavioral

$4 million - Medical/ Pharma

$9 million - Epi./ Other (overhead)

$8 million - Environmental

Total: $94 million in ASD grants

NIH claims to have spent: $208 million

$114 million for overhead or grantee universities? Why so much?

Problems w NIH ASD Environmental Science Research

The vast majority of ASD families have made it clear to IACC, the NIH and their members of Congress, etc. that they expect to see much more environmental spending. Currently the NIH spends less than 10% of ASD research funds on enviro science – even after giving benefit of doubt to a number of questionably environmental studies (“enviro” studies designed by and conducted by geneticists). Additionally the environmental spending grants chosen by the NIH are largely redundant in nature and of a low priority.

Oddly, among the largest NIH/ ASD enviro grants are studies dedicated to studying ASD/ environmental factors in foreign countries. This would not be a concern if the enviro science budget were not so small, yet it is. Awarding 20% of all NIH enviro grant dollars into research on enviro triggers in foreign countries makes no sense and is not what Congress wants to see.

By Katie Wright

Well, almost everything

Dr Ring’s tenure decimated AS Science. Ring chose to fund approximately 30 large studies. A small percentage of these grants are of passable value but most of Ring’s scientific choices are wasteful fiascos. Probably 5% of Ring’s grants deliver value to AS consumers. Virtually none of Ring’s grants will help people struggling with autism now. What follows are lists of the largest grants made during Dr. Ring’s tenure as AS’ Chief Scientific Officer.

 

EARLI                $1.6  million

Earli studies have, by and large, been a massive disappointment. EARLI/ AS studies have spent a lot of money spent on hopelessly redundant parental age research, studies on the dangers of cigarette smoking to fetuses (newsflash, I know) and maternal infections. EARLI research is not supposed to be SOLELY prenatal in focus. There are about a twenty maternal infection studies, it’s a good subject but we needed EARLI to study POSTnatal immune challenges. This is an overreaching problem w Autism Speaks science; their continual failure to study any issue remotely novel and their failure to represent consumer priorities to EARLI. No one, not 1 ASD parent wants more “old parents cause autism research.” Most ASD parents want postnatal immune research but Ring’s consistent disregard for consumer priorities were a signature of his leadership.

Ethnicity and Autism/ Screening/ Study of

Training Comm. Partners UCLA            $450,000

Screening Koreans                                      $400,000

Rural Bangladesh & Autism                     $400,000

South Central LA & Autism                      $300,000

Urban Autism Placement                         $400,000

Frenchman (Eric Fombinne) Study of Latino ASD Screening in Portland OR (the dumbest of all)

$300,000

TOTAL $2, 300, 000

I leave this to the reader to judge. Nothing inherently wrong with awareness programs or educational training. The question is whether or not this should be the high financial priority it is?  Would African American Latino, Asian ASD kids benefit most from awareness programs or treatment? Who benefits most from these grants? The investigators and universities or actual families struggling w autism?

Baby Sibs

Early ID and Databases          $1, 200, 000

Amount Wasted:                      $1, 200, 000

By Katie Wright

This meeting was truly a mixed bag, but there were some good laughs.

OK, as usual half the IACC members were absent at roll call.  I cannot understand this. Anyone on IACC lobbied HARD to get that seat. Just show up, already? Not too much to ask, right?

The composition of the public members is so bizarre. Why is James Ball still on IACC? James said like four things last year and although Ball has an ASD child he no longer represents any ASD advocacy org. There are oo many free agents masquerading as public representatives at IACC.

In the past, when most IACC reps left the org they were representing, they had the decency (Simons) to vacate their IACC seat so that a new member could be nominated. But not Dr. Rob Ring! Ring left/was asked to leave/ Autism Speaks. Ring has zero clinical expertise about autism. Ring has zero affected family members with autism and Ring has not been involved with any autism org for over 6 months. Ring describes his credentials as the former head of “Autism Medicines” at Pfizer. Well they never developed any “autism medicines” and closed down that unit.

Ring’s contributions to AS include dozens of hugely expensive and failed endeavors: Seaside, PACT, endless eye gazing studies and my personal favorite: paying a Frenchman almost half a million dollars to do study outreach to Latinos in Portland, OR. Just end it Ring, please walk away, do yourself and everyone else a favor and move on.

The Good

ABLE ACT was passed, that’s great news. Avonte’s Act was also passed, terrific. More federal efforts are being made to accommodate ASD in the workplace, nice.

Wendy Fournier, president of the giant ASD org NAA gave an update on wandering issues. We all owe Wendy so much. Wendy  Fournier has single handedly pioneered this issue by bringing it to IACC’s attention nonstop over the past 5 years. Wendy has been a tireless advocate for Avonte’s Law. Only because of her efforts did IAN finally agree to do the wandering survey.  Wendy Fournier is one of the m hardest-working and most efficacious advocates in the ASD community AND she represents a giant autism org. However, the NIH has denied Ms. Fournier a seat on IACC for almost 10 consecutive years. Shame on you Tom Insel and company.

John E. Robison deserves his own paragraph in the “good news” section. I never want this guy to leave IACC. An HHS representative (annoyingly her name and title was not listed in the agenda and I only caught the woman’s first name, Melissa) gave an insanely complicated and nonsensical speech on why there are so many limits on where federally funded ASD group housing can be located. This woman talked in circles for 15 minutes. I will summarize:

“Transitional period…operating agencies…mental illness assessments…level the playing field…minimum floor criteria…5 year transitional analysis… congregate settings…non congregate settings...no definition of community integration…multiple state analyses.”

By Katie Wright

I have to hand it to Dr. Jeremy Veenstra-Vanderweele (henceforth referred to as VV). Somehow, despite a decade of failure into “rare genetic subtypes = ASD treatment” research, VV remains optimistic. But I suppose it is easy to be optimistic when you are spending other people’s money, right? Why give up if you are being handsomely subsidized to fail? This is the classic autism research business model! Right out of Dr. Rob Ring’s and Dr. Tom Insel’s playbook: keep failing and blame consumers for being too “demanding.” 

The title of Dr. VV’s lecture was unintentionally funny: “Research Pathways to Autism Treatment.” For years, the “pathways” Dr. VV has been speaking about so optimistically have sadly run straight into brick walls.  Dr VV and his colleagues have achieved exactly 0.0 successes, but you or I knew this would be the case all along, right? Assuming the study of tiny genetic subtypes would yield treatment interventions applicable to all never made any sense.

VV, Buxbaum, Rob Ring, Paul Wang, Mark Bear etcetera … have all bet the house (with our money) that the study of ASD people with rare chromosomal abnormalities will yield treatment for all those with non-syndromic autism. The idea was SO naïve from day one. One cannot successfully drug autism away. Successfully treating the debilitating symptoms of autism involves matching the problem with a solution.

I wish those FX, TS, McPhelan families nothing but the greatest success. They are fighting the same battle as you and I. FX, TS and McPhelan Moms and Dads want better lives for their kids. Their kids deserve better lives. Unfortunately, what helps kids with “syndromic autism” is unlikely to help the other 95% of autism families.

Recently a MIND researcher finally got curious about why “ASD genetic subtype” research never succeeds. What took her so long, right? Anyway she was studying a group of “ASD” kids with the 22q deletion. Upon closer examination of the group the investigator discovered that none of the 22q kids in the autism study actually meet the criteria for autism! Yes, these children have cognitive challenges and sometimes sensory issues but that is the sum total of the commonalities. Could it be that the “autism is genetic” research industry has been shoehorning non-autistic kids into the ASD category because it fits their storyline (autism IS genetic)?

By Katie Wright

Here we go again, the NIH takes one step forward and then, immediately, one step backwards.

The majority of researchers serving on the NIH Regressive Autism Workshop Panel were remarkably unacquainted with regressive autism. Most participants seemed to be only tangentially engaged in this subject. Instead of parents with regressive ASD kids and clinicians like Herbert, Frye, Jyonouchi, professionals who successfully treat kids with regressive autism everyday, the NIH regression panel was stacked with experts in Retts, eye gazing diagnostics, animal models, social psychology and of course (!) genetics. None of the participants seemed familiar with recent very promising autism immunology research. So much time was wasted time asking questions that have already been answered. Even worse so much time was wasted on the extensive discussion of irrelevant scientific issues and conditions.

I am baffled by NIH panelist choices. NO stakeholders involved in any way. No toxicologists, no clinicians…But let me tell you what the NIH Regressive Autism Workshop did offer: an expert in ferret biology! Seriously, a ferret scientist was given a starring role at the regressive autism workshop. I couldn’t make up something so preposterous if I tried.

But listen, I don’t want to blame the ferret scientist. She has never done any autism research but was invited so she showed. Ferrets aren’t the enemy! I like ferrets, I had one as a pet. But why go there when so many incredible scientists who already have great animal models? I bet no one on that panel has even seen Dr. Derrick MacFabe’s “ASD/GI” rat films. His autism animal models are terrific. Rats are a comedown from ferrets, I get it, but MacFabe’s animal models are the best around.

NIH leaders take an almost psychodynamic perspective to autism. Half of the panel discussion revolved around endless learn the signs, eye gazing, face processing, social psychology and other minimally valuable autism research. The NIH must make the connection that recognizing signs of autism does not = treatment, causation information or prevention. It is step 1 out 100. We know the signs, we know the signs, we know the signs and we know what poor eye contact means. We also know it is 2016. The NIH must stop pouring millions upon millions of our research money into face gazing. It is horrendously wasteful.

As part of the psychodynamic/ genetics only paradigm, conference organizers excluded all experts in environmental science and ASD. Incredibly the NIH did not ask one ASD environmental scientist, not a Dr. Van Der Water, not a Dr. Hertz-Picciotto to attend. SO much exciting new regressive autism revolves around the immunology of autism, yet no sign of that on the NIH panel. Forget it, they needed those seats for face gazers and ferret specialists!

Not content to parade their lack of understanding of regressive autism, the NIH panelists insulted affected families in the process. When Dr. Jason Wolff, the only lecturer who shared novel data, spoke repeatedly about “something happening” in the brains of toddlers who would go on to develop autism. Dr. Wolff stated “something happens between 12 and 18 months.” Some conference attendees attributed the loss of skills to “deprived” environments. It is one thing to be ignorant of regressive autism, yet another to blame parents. I remember thinking to myself at the time, “people blurt out stupid things in a moment, things which they might not mean. Others on the panel will correct this person now.” Nope, no correction to this absurd conjecture, just a lot of vigorous nodding in approval!

Great going NIH- bad parenting = autism. Nice way to bring Bettelheim back from the dead. I love how speaking about vaccine injury is forbidden at the NIH, but blaming parents as the cause of their child’s autism is just fine. So much of the discussion was crazy making.

On Jan 26, 2016, the New York Times published a review of ‘In a Different Key: The Story of Autism,’ by Jerome Groopman.   Groopman told readers that this book shows that we're just now recognizing autism "as part of the human condition." 

 “In a Different Key posits that the condition is not a new phenomenon." 

Groopman alleged there's been a history of eugenics involved in autism as shown by calls for institutionalization and sterilization of the disabled in the past. It seems we've didn't deal with autism in any ethical or responsible way in the past; we've only recently awakened to what's always been here.  Mothers were in the forefront of the fight to recognize and accept autism. 

Donvan and Zucker make it clear that the vaccine-autism controversy has been a "dangerous detour."  A reference was made by Groopman that Katie Wright, the daughter of the founders of Autism Speaks, Bob and Suzanne Wright, seemingly led her parents into the "anti-vaccination" camp.  Autism Speaks became "'entangled' in the work of Andrew Wakefield.  This led to criticism of Autism Speaks.

...As the book approaches the present day, Donvan and Zucker address the dangerous detour taken by prominent advocacy groups about the causes of autism. A deeply reported chapter features Bob Wright, the former chief executive of NBC, who became involved in autism advocacy after his grandson received a diagnosis. Wright believed that there needed to be “a big tent” effort to ultimately understand autism. He founded a nonprofit, Autism Speaks, in 2005, which enjoyed great success until it became “entangled” in the work of Andrew Wakefield, the British gastroenterologist, who tied development of autism to the MMR vaccine in an article in The Lancet in 1998. His report was soon discredited, and the article retracted. Alas, this research, shown to be severely flawed, is still cited by opponents of childhood vaccination.

Autism Speaks tried to remain neutral in the “debate” but gave a voice to ­anti-vaccination activists, one of whom was Wright’s daughter.  While championing the “proven benefits” of vaccination, it also promised to investigate whether vaccines were dangerous. “Attempting to bridge the chasm between two polarized constituencies, the organization had been forced into rhetorical somersaults,” Donvan and Zucker write, and it never regained its former prominence after the controversy.

I wish Jerome Groopman had actually done more than just look at Donvan and Zucker's book.   While not naming Katie, Groopman described her as an anti-vaccine advocate. Listen to her story.  It's time for people like Groopman, Donvan and Zucker to learn about the reality of vaccine-induced autism.

Listen to Katie Wright in the YouTube interview with David Kirby from 2007, David Kirby Interviews Katie Wright on her son's autism regression and her stance on Autism Speaks

  https://www.youtube.com/watch?v=VbkHjTIaI-0

In a Different Key has nothing to do with Katie's son's vaccine injury.  How does her story of her son's regression into autism and the medical community's response in any way resemble a something that's always been "part of the human condition."

Christian was a healthy, normally developing baby.  At birth he received the Hep B vaccine without his parents' consent or knowledge.  He received the recommended vaccines as a baby and had reactions like 12 hours of screaming and a fever of 104.  Her son's pediatrician said this was a normal reaction.  By age 2 he was losing language and became withdrawn.  Eventually, he lost 90 percent of his words. 

By Katie Wright

I almost feel sorry for Dr. Bruce Cuthbert, almost…Clearly Dr. Cuthbert has no idea what he was taking on with IACC. Cuthbert lacks the urgency our families feel and spent an inordinate amount of time on administrative details. He already has Dr. Daniel’s extroadinary team organizing these meetings. No need to re-invent the wheel. Instead of giving each member 5 minutes to talk about themselves, autism families would have preferred to hear about each IACC member’s constituency and their top research priorities plus ideas about closing gaps. Be practical!

1) There has been no IACC meeting for 15 months.

2) That is inexcusable, period, end of story, full stop.

3) Dr. Insel chose to ignore his IACC duties for over a year.

4) Nominations for IACC committee members were submitted in a timely fashion (at least by me and almost everyone I know) over 1 year ago! Cuthbert should have apologized, sincerely and repeatedly for the NIH’s failure to hold an IACC meeting for over a year.

5) Instead of taking responsibility Cuthbert said that IACC has not met in 15 months “because these things take time.” No you and Dr. Insel wasted time Dr. Cuthbert. You both clearly wasted a great deal of time.

Then we heard from Dr. Francis Collins. Cuthbert profusely thanked Collins for “attending.” Please, don’t do us any favors Dr. Collins. Collins “attends” one IACC meeting a year by arriving just in time to give a 5 minute speech and then leaving immediately afterwards. That isn’t “attending” it is delivering a short lecture and allowing no Q & A.

Collins has zero understanding of the autism community and was not interested enough to stay an hour to hear from ASD families. Instead of addressing issues families care deeply about, such as the catastrophic rise of ASD, vastly under researched environmental triggers or the failure for the NIH to make any treatment progress over 25 yrs, Collins gave a lecture on the BRAIN initiative. The BRAIN project is basically a study in tool making for brain science. It is not researching any treatments or addressing prevention in any way. This project on tool making will have zero impact on my child and yours, it will not uncover 1 causation factor, nor will it prevent or cure one case of autism.

I am SO Brain Initatived Out! The hype is insane. Total academic self-stimulation. If Collins really understood autism and cared about our families he would know that it is the Microbiome Project that IS actually relevant to our families and offers tremendous here and now value. The Microbiome Project offers almost infinite here and now opportunities to both prevent severe autism and help those suffering with GI problems NOW.

After Collins we heard from all IACC members. I believe the limit of IACC service for an individual is 8 yrs? Someone correct me if I am wrong. Alison Singer of the small Autism Science Foundation has just been re-appointed for her 9^th yr of service. The time limit is there for a reason- to give other orgs a chance to sit in those public seats. Additionally ASF has a tiny ASD family base. I am unaware of any services ASF offers families. ASF is primarily a research org funding genetic and early ID science. Yet, those are the two most overfunded areas in the entire NIH ASD research portfolio. All the more reason the NIH should be diversifying the IACC public membership by including organizations that represent gap areas of autism research.

The National Autism Association has about 12,000 members. The NAA offers a myriad of services, personal family support, direct assistance with wandering prevention and a huge 5-day medical and educational conference for ASD families. Wendy Fournier, the NAA president pioneered anti-wandering work and crated the first coalitions. Fournier created the first anti-wandering program, The Big Red Safety Box. It is absurd that, despite being nominated 10 yrs in a row, Wendy has not been allotted an IACC seat.

SafeMinds is an org compromised of 5,000 ASD families. SafeMinds fills a gigantic gap in the ASD science landscape by being the only autism organization SOLELY devoted to enviro research. TACA has over 10,000 members and provides numerous advocacy and mentoring services to families as well as an incredible biomedical and educational (IEPs, insurance workshops…) conferences. THESE orgs deserve seats at the IACC table.

Dr. Rob Ring….The autism community’s disappointment with this man never ceases. Ring wanted that seat, sought that seat, purportedly to represent AS families, NOT the community of geneticists. Can someone remind him of this? Ring asked no questions and basically said nothing other than a boilerplate 2-minute science speech. Dr. Ring you are there to ACTIVELY participate and advocate on behalf of families, not just to take up space.

By Katie Wright

Dr. Tom Insel of the NIMH and Dr. Rob Ring of Autism Speaks have dream jobs. These men very much wanted the powerful positions they hold. Insel is essentially in charge of all NIH autism research. Insel would disagree and say the NIH president and others at the NIH hold more sway. This is difficult to believe when Dr. Collins came to 1 IACC meeting in the past 4 years and left right after he spoke. As the CEO of AS Science Dr. Ring as controls the direction of tens of millions of dollars of ASD family raised research money. Insel and Ring have virtually unlimited scientific power within their organizations and are unaccountable and largely unavailable to ASD public at large.

There are those who believe that any public discussion or evaluation of ASD research leaders is equivalent to a  “personal attack.”

 Oh, the drama!

A “personal attack” is an attack on one’s gender, sexual orientation, religion, etc….Parent and consumer advocates believe that the powerful and well compensated adults who control our ASD research dollars are very much public figures, by choice, in the autism world. When one accepts a public position of tremendous power and spends taxpayer money or money donated by 10,000s of ASD families, accountability and public feedback are part of the deal. Put on those big boy pants. NIH money and AS science dollars are directly the result of the powerful advocacy efforts of autism families. It is vitally important for bureaucrats and academics to remember that no one is a victim here, only those disabled by autism.

Here is the problem: you and I have exactly zero opportunity to be heard by AS science or by the NIH. There is almost no opportunity for public input at the NIH or within AS science. IACC does offer a public comment period during meetings (which are usually held about 4 times a year). However, IACC has not had a meeting since July 2014 - so much for that. AS science offers no “town halls,” no website surveys, no Q & A opportunities. Insel, and especially Ring, rarely, if at all, blog or tweet…making their isolation from autism families, especially those who are not hand picked to serve them, nearly complete.

I would have a better chance, a vastly better chance, of calling up my senator’s office and asking for a meeting or interview than ever getting a returned e-mail or phone call returned from Dr. Rob Ring.

I am one of about 14,000,000 constituents to Senator Schumer but he, and all elected officials, knows that public input matters and an effective leader must try hard to stay engaged with the people they serve. When one is an unelected president of any advocacy organization, it is easy for ego and hubris to run unchecked. There is by definition no reality check. Neither Ring nor Insel care for, treat, live with or spend much time with ASD people (especially those not HF). It is all too easy for unelected bureaucrats to disappear from the communities they serve, except to re surface at board meetings and academic conferences.

By Katie Wright

A month ago Dr. Tom Insel, director of the NIH’s Interagency Autism Co-coordinating Committee appeared in public at an Autism Speaks event. What a surprise! We, the community of ASD families, have not seen Insel at an autism event since 2014.

The last IACC meeting was almost one year ago. Since that time Dr. Insel has yet to announce the date for the next IACC meeting or even the member roster for the new 2015 committee. 2015 is more than half over so you can see how high priority autism is for Dr. Insel.

Rob Ring had asked Insel to discuss NIH ASD research “progress,” on a public panel. I know, I know, you are laughing. And yes, when asked specifically what progress the NIH has made regarding autism Insel’s answer was, you guessed it, early intervention! Sure that is the same answer Dr. Insel gave in 2000, 2001, 2002, 2003….you get the point. Insel really sticks to that script.

It is disappointing that AS’ Dr. Rob Ring did not use the opportunity to ask Insel why he has failed to hold ANY IACC meetings in 2015. Ring holds a seat on IACC and his job is to represent the community of ASD families. Ring should have been asking Insel tough questions, not softballs. Ring’s job is to represent our children (who, by and large have no voice), not to be Insel’s pal.

By Katie Wright

We have such a relatively small amount of federal money for autism research. We cannot afford to waste it on incremental and unambitious science. The ATN is supposed to be about Treatment, not summaries of summaries or reviews of the obvious. Additionally ATN is supposed to address GAP areas of treatment rather than conducting superfluous research. ATNs are located in hospitals. Parents take their sick ASD children there because of GI pain, immune dysfunction, seizures, severe food allergies, inability to sleep or stay asleep, metabolic or mitochondrial problems. They do not want ATN to summarize their child’s problem; they want ATN to develop real solutions for their child’s problem.

Examples of Typical ATN Research

Mainly 2013- 2014

Health Care for Children with ASD. (yes, as suspected, healthcare for ASD kids is poor)

Medical Treatment for Children with ASD.  (not much)

Little Evidence to Support Medications for Children with ASD.  (no kidding)

Little Evidence of Clear Benefit for Medical Treatments for Children with ASD.  (same as above)

Evidence Based Practice and Health Advocacy for Children with ASD. (nothing much)

Here is the bottom line: ASD Kids have health problems and need better medical health care. Everyone knows this.

Communication Deficits and the Motor System- newsflash they often go together

Alarm for Toilet training- OK, bought a $3.00 egg timer. I put my son on the toilet every 30 minutes. It works, done deal, no need to spend tens of thousands studying this!

Relationship Between Restricted Behavior and Sleep Disturbance. More severely ASD people have the worst sleep problems, established over 5 yrs ago, move on

Correlates for Sleep Disturbance. Sleep Problems and Sensory Over responsiveness. Same as above

Identifying Insomnia – any ASD parent can identify this for free

The first and second ASD/ Sleeplessness Study were great but there have been a half dozen almost identical studies. ATN needed to study the biological problems causing sleepless. Behavioral interventions alone do not always work. For 10 yrs I have asked ATN to please study yeast and wakefulness. No way.

By Katie Wright

The Autism Treatment Network needs help.

In theory ATN is an excellent idea. ATN member hospitals could specialize in providing medical services to ASD patients. We all know how unfamiliar most doctors are with the chronic medical problems many ASD people endure. It is a great idea for interested hospitals to conduct relevant research and provide cutting edge diagnostics and treatment to the underserved ASD community.

Early on there were a few bright spots at ATN. In 2009 at the urging of many, many parents ATN held a GI conference and released and important consensus statement on the prevalence of the disorder in the ASD population.

ATN also has done nice work on creating guidelines for treating constipation (why they leave out diarrhea is beyond me, 2 sides of the same coin). ATN has done a great deal of early identification and early ID work. It is good science but ASD parents don’t take their kids to the hospital to ask for more learn the signs research, additionally there are endless funders of early ID and learn the signs science.

Sadly in recent years, the Autism Treatment Network turned into the Autism Data Collection and Psychological Research Center.

There is very little cutting edge research going on at ATN and far too much investigator driven incremental academic science. I am also very tired of hearing complaints from ASD parents who cannot get good medical help for their autistic kids at ATNs. Or if excellent medical help is available at a particular ATN the waiting list for that specialist is a year and half!

By Katie Wright

In what universe do you blow over a billion dollars on an unworkable, irresponsible project yet be able to keep your job and receive praise, by your boss Dr. Francis Collins, for such work?

At the NIH, of course!

Dr. Alan Guttmacher, the head of the Eunice Kennedy Shriver Institute of the NIH, has been the figurehead of the National Children’s Health Study Project (NCHS) for 12 years. Guttmacher lead almost all meetings and a major media spokesperson for the project.

We all know Dr. Guttmacher has sat on IACC- well for an endless amount for yrs- talking a great game but accomplishing nothing. It is quite a feat to sit through probably 100 hrs of autism meetings yet still remain in the dark on autism science.

Almost 2 yrs ago Dr. Guttmacher was asked to testify in front of the Congressional Office of Government Accountability. Congresspersons asked Guttmacher to give examples of treatment progress resulting from the last 10 yrs of NIH funded autism research. Conservatively the NIH has spent almost $500 million dollars on autism research. One would think that such an enormous amount of money would translate into at least 1 treatment intervention.

Well not in Dr. Guttmacher’s world! Guttmacher asserts that progress has been elusive due to lack of funding! Please, Dr. Guttmacher could have $10 billion for autism research and still manage to achieve nothing and possibly even, move the science backwards. Seriously I think if we pasted all autism grant applications on a giant wall and chose them by throwing darts, blindfolded, we would choose better projects to fund and achieve more progress than Dr. Guttmacher.

So finally Guttmacher was asked to give 1, just 1 example, of treatment progress resulting from NIH funded research- excluding early intervention and ABA. Almost 30 years ago Dr. Ivar Lovass created ABA, the premiere behavioral intervention for autism. So guess what was Guttmacher’s answer, “behavioral therapy.” I know, so funny! So the congressperson again asks, impatiently by now, “Give me an example of a treatment innovative, EXCLUDING ABA.” Guttmacher- no answer. Guttmacher has no idea what the gaps in autism treatment research even are. He could not answer the simplest softball questions.  I mean this man is so clueless, so checked out; it is little wonder he managed to lose a billion dollars of taxpayer money.

By Katie Wright

I love the movie, “Radio Days.” It’s a comedy loosely based on Woody Allen’s close-knit Jewish family living in Brooklyn in the 1940s.  There is a great scene in which Woody Allen’s family, who are mildly observant Jews, are angry and offended by their Jewish neighbors, who happen to be communists, having a noisy party on the Sabbath.  Woody Allen’s uncle starts yelling that their neighbor basically thumbing their nose at Judaism and that he is, “going over to make them understand they need to respect the Sabbath!”

 The uncle storms out only to return like 30 minutes later with a crazed look in his eye. The family asks why the music next door is still blasting and the uncle says, “why should we be beholden to religion? We are workers who keep the means of production going! What has religion done for the proletariat?” Just under an hour and the Woody Allen’s naive uncle is completely brainwashed by his communist neighbors.

The horrendous interview with Dr. Paul Wang, Autism Speaks Medical Director, and Ronan Farrow reminded me so much of that “Radio Days” scene.  Dr. Wang claimed to be “agnostic” about the vaccine issue when hired. Right, I know what you are thinking. “agnostic” seems to always = vaccines are 100% perfectly safe and how dare you ask questions! Still Wang promised that he was “open minded.” Believe me, NONE of this was my call; I am just giving you the public back-story.

Incredibly, Dr. Wang had almost no clinical experience before becoming medical director of AS! So I invited Dr. Wang to AutismOne, the NAA and the Autism Education Summit conferences. These conferences are all about ASD MEDICAL issues and treatment innovations. More importantly I thought it would be valuable for Dr. Wang to spend time with cutting edge ASD clinical experts like Dr. Rossingnol, Dr. Usman and Dr. Bock, doctors I know he has never met or whose work he has never read. Dr. Wang could also spend time with parents of severely medically affected ASD kids, you know, the kind of kids Wang is supposed to be serving. But no and no. Dr. Wang was not interested in learning more about our kids or about the latest ASD medical interventions. Oh, no! Dr. Rob Ring, AS’ Chief Science Officer of Dr Wang will not go anywhere near these conferences!

I will tell you where Dr. Wang and Dr. Ring DO hang out: at super conservative and academic conferences like genetics conferences, IMFAR and in Dr. Tom Insel’s office! At IMFAR one basically “learns” autism is all genetic, except for those trouble making oldie parents! At IMFAR one also learns that the only “treatment” is to “learn the signs and get early intervention.” Oh and if early intervention doesn’t work- tough luck for you and your kid!  With Insel, Wang learns all about how parents of vaccine injured kids are just, “looking for someone to blame,” because we all know ASD is basically genetic, and so forth. You get the picture.

Note: Yesterday was an IACC meeting. If you listened or participated, please give us your thoughts in the comments. Below is a post from Katie Wright on the previous meeting held on July 8. We'll have a summary of yesterday's meeting soon. Thanks.

By Katie Wright

For so long, parents like myself have been frustrated by numerous and endless IACC meetings dedicated to the discussion of common genetic variants, Fragile X, de novo variants, the genome, early intervention….but today, finally, regression, a huge issue affecting 40% of those with autism, was center stage. Thank you to Susan Daniels and her team for arranging the terrific IACC meeting addressing autistic regression.

In 2014 autistic regression should be discussed as matter of fact and with urgency. This issue affects 40% of those with ASD! Yet still, sadly, autistic regression is often approached with timidity and fear. When Dr. Audrey Thrum started to speak about regression she immediately couched what she was about to say (which was extremely tame!) by describing regression as a “loaded topic.” What?  Is apraxia a “loaded topic?  Are sleep disorders a “loaded topic?” Is echolalia is “loaded topic?” No Dr. Thurm these are REAL issues, not “loaded” topics. For goodness sake Dr. Thrum, of you are going to research autistic regression stop being scared of what others think and represent these children.

And yes, yes, yes, Kanner, described regression 50 yrs ago…we get it, we get it… But these researchers never add that the Kanner children who regressed had parents working with dangerous, potentially neurotoxic chemicals. Important detail always omitted. But please, take it from a Mom of a regressive child who has obsessively researched regression (I am also talking to you John Elder Robison) for 11 years there has been a miniscule amount of solid research on this subject.

Since 2004 I have read hundreds book on autism that. I was up at night; for years- Christian was awake anyways so I read books on autism. I could barely find a child whose autism resembled that is my son’s in these volumes. Either the books doubted regression was real or if it indeed happened it was not serious, or regression did not actually occur but parents “missed the signs and “were looking for something to blame.” One of the reasons my parents started Autism Speaks was that, despite visiting some of the best hospitals and pediatric neurologists in the country, no doctor at Cleveland Clinic, Mass General, Kennedy Krieger, Columbia Presbyterian Hospitals had any idea why my son had a catastrophic regression. Few of the doctors we meet with even seemed familiar with severe autistic regression and none knew what to do about it.

So back to Dr. Thurm. Thurm prefaced her talk by stating she has a nephew with autism and cares about this topic. Ok, but how on earth could she be so apprehensive about talking about regression and not be more curious about why it is even happening?

Interestingly (and not surprising to most of you reading this) Thrum found most regressions happen at 12 months and 18 months. Hmmmm…..what happens to every American infant at 12 months and 18 months? Oh what oh what could it be?

Next we heard from Dr, Rebecca Landa from Kennedy Krieger. Dr. Landa expressed surprise that she had found that regression was both widespread and vastly heterogeneous in nature.

By Katie Wright

I was happy when I first heard Ms. Idil Abdul was appointed to IACC.  Abdul is an ASD mom who represents an under served community and brought much needed diversity to the committee. Initially, Idil was a real fighter, working hard to make change and give voice to all in her community. Over time, however, Idil has been active largely only on the wandering issue and cultural inclusion in autism research. Idil often focuses on the need for greater sensitivity training of researchers and better inclusion of the culturally under represented. Those are indeed very important and worthwhile issues. Yet, sadly, when rare opportunities for here and now prevention DO arise, instead of taking action, Idil demurs from controversy.

Skin lightening creams are commonly used by Africans and the Somalis who recently arrived in this country. Skin lightening creams contain mercury, a potent neurotoxin. They are extremely unsafe. These lotions are officially banned in the USA for a reason. The FDA’s minimal safety standards are incredibly low, so to be totally banned = really dangerous.

Mercury causes brain damage. Imagine rubbing mercury all over one’s face. I bet Somalis are unaware of these dangers. I sincerely doubt there are warning signs on these illegal skin lightening product containers. Even a few IACC members were astonished to see the content of these creams and learn they were readily available over the Internet. Idil acknowledged that these very dangerous creams were widely used but, “did not want to get into trouble by talking about it.” Idil, you are there to help your community, not to be liked or avoid controversy. Do the right thing and address this. Speak out Idil and say, “I am going to start a public conversation about the dangers of skin lightening cream NOW.” Don’t looking to the govt to answer every problem, take this opportunity to spearhead critical change.

Rarely do such clear-cut opportunities to prevent autism prevent themselves!

When 12 year old sisters of severely affected ASD boys share their heart with the IACC committee and share their deepest and more painful concerns, the response of an IACC member should never be: “you are wrong and you are looking for something to blame.”

Shame on John Robsion and Idil Abdul. How dare they tell the courageous girls they are “looking for something to blame,” or as Idil said, “well you hear something enough you start to believe it, even if it is not true.”  What a condescending comment. The job of public members is to be respectful of the public – not lecture 12-year-old girls that they are dumb and don’t get it. If John and Idil have nothing constructive to add how about being quiet for a change and allow someone who has something to contribute to speak.

Managing 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.

Managing Editor's Note:  I laughed like heck when I read these Onionesque 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!

By 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!

By 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?

By 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?

By 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.

By 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.

Managing Editor's Note:  Our contributing editor Katie Wright wrote a post 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.

By 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.

By 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.

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.

By 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 20^th 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!

By Katie Wright

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.

Managing 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.

By 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.”

Managing 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.

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.

By 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.

By 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.  

By 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 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 needles. 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.

Managing 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 to 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).

Managing 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.

By 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 our 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!

I lived on the edge when I was pregnant. I watched a lot of TV (now I know 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?

Then 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.

By 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 1/50^th the investment of psychotropic drugs trials wouldn’t you be thrilled? Gabby Giffords also had a team of OTs and speech therapists helping her.

By 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.