AGE OF AUTISM

Courchesne Brain Study Not Worth Sacrificing our Children Further

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.

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

By Katie Wright

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Katie Wright

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

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

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

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

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

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

At IACC Geneticist Reacts to News Autism Is 50% Environmental

By Katie Wright

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

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

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

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

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

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

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

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

AAP: Trampolining Injuries Are An EPIDEMIC!

By Katie Wright

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

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

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

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

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

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

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

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

Trampolining accidents are a mystery we need time to unravel.

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

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

Sounds pretty reasonable right?

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

By Katie Wright

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

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

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

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

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

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

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

By Katie Wright

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

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

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

CD Foakley Autism Broken Nights and Lost Days

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

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

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

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

The Facts and Fiction of Autism Research

By Katie Wright

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

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

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

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

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

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

1) Autism and Brain Imaging    953

2) Autism and Genetics     3, 277

3) Autism and the Genome         844

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

The Crazy Science and Fury of Dr. Laura Schreibman

By Katie Wright

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

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

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

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

Interagency Autism Coordinating Committee Members Who Do NOT Show Up!

 
By Katie Wright

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

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

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

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

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