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.

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.

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?

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.

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?

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.

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. 

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

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.

 
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.

By Katie Wright

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

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

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

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

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

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By Katie Wright

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

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

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

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

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

By Katie Wright

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

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

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

By Katie Wright

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

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

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

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

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

By Katie Wright

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

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

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

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

Katie Wright is a Contributing Editor for Age of Autism

By Katie Wright

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

By Katie Wright 

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

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

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

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

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

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

By Katie Wright

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

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

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

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

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

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

By Katie Wright

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

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

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

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

By Katie Wright

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

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

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

By Dan Olmsted 

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

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

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

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

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

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

Anyone concerned about any of these things fits Offit's definition of anti-vaccine, because vaccines don't cause any of them, because Paul Offit says so, a solipsism that is really quite breathtaking: "[B]ecause anti-vaccine activists today define safe as free from side effects such as autism, learning disabilities, attention deficit disorder, multiple sclerosis, diabetes, strokes, heart attacks, and blood clots -- conditions that aren't caused by vaccines -- safer vaccines, using their definition, can never be made."

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

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

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

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

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

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

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

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

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

--

Dan Olmsted is Editor of Age of Autism

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

By Katie Wright

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

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

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

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

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

Katie Wright

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

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

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

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

“No questions!” bellowed Dr. Phil Landrigan.

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

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

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

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

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

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

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

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

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

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

By Katie Wright 

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

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

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

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

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

By Katie Wright

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

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

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

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

Autism Research at the National Institutes of Environmental Health Otherwise Known As The Opposite of Dept of Defense’s Inclusive, Progressive and Innovative Autism Research Program

By Katie Wright

About a month ago Autism Speaks and the NIEHS held an all day conference on environmental issues and autism research. Sounds great, right? When I learned of this meeting in the planning stages, I was excited. Wow, a conference on ASD/environmental research. This is something that 99% of the autism community could get behind. Great start!

Then I learned that the meeting would be a brain storming session in which AS and NIEHS invited scientists working on other diseases like Parkinsons and MS to discuss opportunities for environmental research for ASD.  OK, a little less enthusiastic. We already have SO many amazing autism environmental scientists who rarely/ and/ or /never get heard or funded by the NIEHS or IACC. This could have been a great opportunity for the NIEHS to actually hear from environmental experts working IN autism research! The ground breaking work of Jill James, Irva Hertz-Pinchero, Jane Eldahr, Richard Deth is mostly unknown to NIEHS bureaucrats. I listen to ALL IACC meetings and the only person ever referencing this important body of work is Lyn Redwood.

It isn’t a bad idea to get points of view from those studying other disease, not at all. But why were strangers to autism the main invitees? Although I barely heard any of the meeting- for reasons I will discuss shortly, a lot of time was wasted with well meaning but elementary questions about what is autism, what are the symptoms, how is it treated, who many kids are affected, blah, blah…This is not an effective use of our time or money (this meeting was paid for by our tax dollars as well as families’ contributions to AS). Scientists who wanted to come to this meeting and whose expenses were paid in order to attend, should have shown up knowing the basics. Really, it was the least they could do and the NIEHS should have ensured this by sending the scientists some ASD required reading prior to the meeting.

Now this is what I really do not understand. How long have parents like us been on top of AS and the NIEHS to address environmental issues? It feels like forever, but that’s just me. Anyways, here they were doing something good, actually responding to stakeholders! One would think they would be touting this meeting from the rooftops, plastering it all over every imaginable autism site: The Schafer Report, Age of Autism, The Simons website, Google Alerts and certainly AS. Yes it was good that the NIEHS had a notice on their website but honestly how many of us check that website every day? It hasn’t exactly been a source of inspiration.

By Katie Wright

No, I am not involved in the military, I do not have a family member serving in the military, and in all honestly the Department of Defense rarely crossed my mind. The only time I feel “militaristic” is when I have had enough of idiotic comments from certain people at NIH and I daydream about marching into their offices, grabbing a few people by the lapels and telling them to stop wasting our time and money and fund some innovative science for a change.

However I want all autism families to know that the leaders of Department of Defense’s autism research program really get it. They are our allies in the fight for our children, rather than just another obstacle. The DOD strongly believes in stakeholder involvement.

The DoD actually WANTS parents’ opinion regarding their research choices. They INVITE a diverse body of Moms and Dads in sit on their grant committee panels. The DoD ENCOURAGES parents to fully participate in all scientific, clinical and treatment discussions. DoD EMPOWERS each stakeholder as a fully voting members of grant committees. The DoD ASKS families what they think of their previous research work and how they can better respond to the needs of people living with autism NOW.

OK does that blow your mind or what? I had to see this to believe it but after participating in one of the DoD’s annual grants review committee, I can promise you that this is all true.

While we have to battle with other governmental agencies and some autism organizations for minimal stakeholder involvement, the DoD welcomes our opinions. While IACC appoints a bizarre collection of psychiatrists, friends or random ASD parents representing no constituency, as public members, the DoD invites people from all major autism organizations to participate. There is none of staleness or groupthink that emerges when the same people sit on a research committee for years and years on end. Non-scientist parents comprise at least 20% of each grants reviewing committee! People rotate every two years in order to ensure the representation of diverse points of view!

I want to thank the DoD for taking a chance on working closely with stakeholders. All other agencies and federal autism research committees should stop what they are doing right now (Dr Cindy Lawler), call at the DoD and ask how to implement this autism research program.

The continuation of the DoD’s autism research committee depends on families making our support of this program known to our Congresspeople and Senators. Please take a moment and let your representatives know how you feel about the inclusive and innovative government funded autism research program.

Katie Wright is Contributing Editor for Age of Autism.

Bearman answers: “genes, old parents and possibly a virus.” This is the best he has got? The NIH gave this guy millions to come up with that?

By Katie Wright

Dr. Peter Bearman, a professor of sociology at Columbia University, recently released a research paper alleging that half of the meteoric rise in ASD cases is an artifact. You know- “better diagnosis” and “greater awareness.” A blind, non-medical professional, could have diagnosed my son. Nevertheless in the case of HF ASD and aspergers (which comprise a small % of overall ASD) certainly greater awareness has played a role in the increasing number of those diagnoses. Still- 50%? Ridiculous.

After reading Bearman’s strange paper I was thinking, “who is this guy anyway?” A friend sent me 2 very interesting videos. The first video involves Bearman being interviewed by Dr. Tom Insel, NIMH director. Insel comes across as a super progressive, environmentally friendly scientist compared to this guy. Believe me, you have to see this. It is Insel the whole time pushing the discussion of the environment. After Dr. Bearman concludes that 50% of the increase cannot be attributed to greater awareness Insel asks what Bearman believes is driving the other 50%. Bearman answers: “genes, old parents and possibly a virus.” This is the best he has got? The NIH gave this guy millions to come with that?

OK, I want to know more about this mystery virus. Is it infectious, sexually transmitted, native grown or foreign born? Did this virus travel from Europe of Africa? Does this virus involve the use of drugs or alcohol? I am fascinated. Yes, Bearman does acknowledge the possible role of some kind of toxin. Bearman is not sure what that toxin is but he is sure what it isn’t. Take a guess.

By Katie Wright

Recently I happened upon an advertisement for Paul Offit’s “Autism’s False Prophets.” Offit is a divisive extremist. Despite having no background in autism or clinical experience with autistic children, Offit feels qualified to publicly relate his “expertise” on  autism’s trajectory and causation factors. Offit’s bizarre proclamations include the theory that babies can safely receive 100,000 vaccines in one day. No problem! It is a convenient belief when one holds a number of vaccine patents. I could go on and on but we all know Offit’s story.

So imagine my surprise when I read a glowing endorsement from Dr. Daniel Geschwind, well know genetics researcher who serves on the NIMH Scientific Advisory Panel, is a member of  the six-person Autism Speaks scientific review panel and won the AS’ Scientific Service Award in 2008. Dr. Geschwind describes Paul Offit as a “brave and articulate champion of the truth” in Offit’s book advertisements. If Offit is the “champion of truth” does that mean that children who experienced severe adverse vaccine reactions and subsequent regressions are fakers or hypochondriacs? Do their parents have Munchansens by proxy?

Does Dr. Offit/ “champion of truth” have a child with autism, of course not. Does the “champion of truth” study children who have regressive autism, no way. Is “the champion of truth” taken seriously by 90% of autism researchers, another resounding no.  Does the “champion of truth” seek to negate the experience and concerns of hundreds of thousands of parents of children- pretty much.

The publisher’s quote was lifted from Dr. Geschwind’s review of “False Prophets” in “Nature Medicine” magazine. Geschwind’s review feeds into Offit’s classic talking points : how Dr. Offit has manly and heroically fought the many forces of evil conspiring against him. Geschwind writes that Dr. Offit has endured death threats (a staple of every Offit interview) from an army of crazed and demented Moms and Dads. All Offit interviews must refer to the hate mail he receives, the threats, the angry phone calls- oh did I mention the threats and the hate mail? How can just one man be asked to sacrifice so much?

Apparently it is Dr. Offit who is the true victim here, not children with autism.

By Katie Wright

July’s IACC’s meeting actually had some wonderful high points. No kidding.  Yes there were insensitive, clueless and unintentionally funny comments- it is the same cast of characters after all. However, IACC had perhaps its best ever scientific presentation in the work of Dr. Isaac Pessah. Thank you very much to whomever made his appearance possible.

The day began with a lengthy lecture by Michael Ganz, PhD about the high cost of autism.

Guess what autism is hugely expensive! Don’t we already know this? There was a heated Q & A between Ganz and Ari Ne’man regarding whether this information would be used to identify ASD fetuses prenatally for abortion purposes. In fairness to Ganz, I don’t think this subject was on his radar screen, but the issue is important for various reasons. Autism is not like Down syndrome. Autism is a wildly heterogeneous disorder. 95% of ASD kids have no chromosomal abnormalities. This crazy idea that we will be able to prescreen fetuses for ASD is asinine.  Would doctors be screening for babies for dairy allergies, or for sub optimal immune systems or babies especially sensitive to environmental pollutants? Pursuing such research would be a colossal waste of money and time.

I think I speak for at least a million Moms when I say that I did not give birth to an autistic baby. Christian did not need to be aborted he needed to be protected from reckless medical policies.

Dr. Pessah presented devastating findings regarding how and why miniscule amounts of mercury cause brain damage in mice as well as how non dioxin compounds commonly found in our environment cause neurological injury. Here is Pessah’s summary:

1) Minute amounts of mercury negatively affect cell structure, amino acids and the metabolism.

2) Mercury is highly toxic to the dendritic cells in the brain and produces “autistic like” (sounds like vaccine court! I love that, not autism but “autism like”) behaviors in mice.

3) Mercury alters T cells and not for the better. This is probably why so many ASD kids are chronically ill.

Naturally we have known all this for some time. It makes no sense now and it never made sense to use Hg as a preservative. Hg damages the brain, and we need to stop using it in all vaccines. Period. End of story.

By Katie Wright

Congratulations to the New York City chapter of the NAA on a terrific night featuring Dr. Andrew Wakefield! The room was packed beyond capacity. It was so gratifying to see the word about the meeting had really gotten out. The diversity in our community is one of our biggest resources. Attendees included doctors, nurses, Wall Street parents, homeopaths, corporate lawyers, chefs, stay at home parents, professional autism advocates, parents from the Orthodox Jewish community, Pakistani grandparents physicians/ NAA directors, journalists, vaccine injured adults, skeptics, teachers, researchers, authors, ABA therapists…So much for the conjecture that we are all a group of dumb like minded automatons takings orders from our new age, anti-government conspiracy theorist leaders. Aside from autism, the people in that room don’t have much in common or time for conspiracies, they are too busy struggling to make their kids healthier.

Dr. Wakefield was terrific, happy to answer any question.  No one knows the subject of GI disorders and autism better. He took no umbrage at skeptical questions and responded respectfully and patiently.  What a contrast to groupthink plaguing IMFAR scientists! So many professional academics avoid parent groups like the plague (maybe they can develop a vaccine for that?), terrified of the questions they will be asked, preferring to stay in their safe, hermetically sealed academic world. When I made a challenging study design enquiry at IMFAR the response was a blank nervous look and the announcement we were just about out of time for questions.

Wakefield spent some time discussing the emerging and frightening macaque monkey research undertaken by Dr. Hewitson. The study was published earlier this week. It is the ONLY study on vaccinated and unvaccinated primate groups. The results are devastating. The combination of adjuvants, live and preserved viruses and our very aggressive infant and child schedule is causing GI disease and brain damage and autism- like symptoms in the monkeys. Unlike previous vaccine studies, this study was NOT financed by a vaccine company, no one from the Hewitson team sits on a vaccine company board, no one will be earning money in relation to the study’s outcome and no one who holds vaccine patents or determines our immunization schedule from the CDC or NIH played a role in this research. The Hewitson paper is exceedingly impactful because it is very rare example of truly independent, unbiased vaccine safety research. So thank you so much for to Dr. Hewitson, her courageous collegeages and all the donors.

As we viewed the slides the audience did not look surprised, only sad. Seeing the vivid PET scans of a vaccinated monkey’s brain vs. an unvaccinated monkey’ brain tells us what we already know, yet is still devastating to see. The brains of the exposed monkeys exhibit a clear pattern of maturational decline. The lights in the house are literally dimming, similar to Alzheimer’s.

As always, in our community of families, the Q &A period included a raucous debate.

By Katie Wright

I was recently inspired by a beautiful book entitled “Walking Papers” by, Franceso Clark, founder of Clark’s Botanicals. At the age of just 24, Clark broke his neck in a diving accident and was paralyzed front the neck down. Very much like the “Welcome to Holland” story, Clark was advised to accept the paralysis and “move on” with his “different” life.  Doctors and therapists told him in effect, sure being paralyzed is tough but you’ll get used to it. Deftly, Clark responded to his doctor, “how about you get used to sitting in this chair the rest of your life. ‘Move on’ with my life, why don’t you move out of my way.”

Clark was determined that he could do better than accepting the grim prognosis he was given. Franceso actively started researching all possible spinal cord treatments and interventions on the (that’s right!) that treacherous internet. Franceso’s spinal cord doctors, much like our friends in mainstream autism research, abhorred such self-empowerment and education. Surely Clark would be victimized by those “snake oil salesmen” who stalk the internet preying on all the dumb and gullible disabled people and their families. It is obvious we are all sitting ducks, waiting to be exploitive, too stupid for our own good.

Clark’s father is a physician and his mother a brilliant scientist. Franceso hypothesizes that they were more open to alternative interventions because his father went to medical school in Europe and his mother is from Italy. Clark was taken aback when his doctors and therapists actively discouraged him from researching his injury and avoid “getting his hopes up.” Didn’t he know he would never walk again, accept it already, was their message.  Franceso was astonished at the vehemence of the medical community’s resistance to trying anything new or funding alternative intervention research. Hmm…boy, that sounds familiar.

Christopher Reeve became Clark’s hero for his unrelenting advocacy for innovative spinal cord research and determination to hurry science. Reeve loved to joke about neurologists. How many neurologists does it take to change a light bulb? Who knows, first they have to release an RFA.  Reeve argued that by investing aggressively in intervention research, more people could live productive independent lives, saving the taxpayers so much money in the long term.  Again, so familiar!  As with autism there are so few evidence based spinal cord injury treatments, we cannot afford to abandon those not making progress, we must support scientists with new ideas. Complete paralysis is so devastating and so expensive, isn’t it foolish not to put everything on the table and invest in exciting innovative science? Ah, Clark was naïve; he did not yet understand that “innovative,” “new,” “exciting intervention possibilities” and “new generation of scientists” are all verboten adjectives and ideas.  No, we must accept the status quo and keep funding the same people with the same stale ideas, over and over again- the more arcane and academic the research the better! Clark sure had a lot to learn.

By Katie Wright

The results of The Autism Genome Project’s Phase 2 results were published last week with much fanfare. Media outlets all over the world covered this story. Reporters titled their stories: “Incredible breakthrough,” “Amazing Discovery,” and “Putting the pieces of the puzzle together!” I am so tired of that last one.

After reading the study I came to a number of conclusions. Scientists are very excited about new technology enabling them to better study DNA. This technology has greatly improved their turn around time. These scientists are obviously very intelligent and hard working, exhibiting tremendous dedication to their belief (not mine) that autism is mainly a genetic disorder. My second conclusion is that a TREMENDOUS about of time, money and other resources have been invested in this project, probably more than any other autism study- ever. I would love to know the exact dollar amount, $100 million, more? The need to justify the use of such resources is inherently powerful on a conscious or unconscious level. My final conclusion is a question: How does finding 3% of the genes associated with one of probably dozens of variants stop this out of control epidemic and how will it help kids living today with autism?

Listen I am not saying I have all the answers or this is easy. Even if it meant finding a cure for autism I could not decipher a microarray. But unfortunately, many families feel that the authors of this study have confused hard work, great collaborative efforts and basic science discoveries with meaningful progress towards uncovering the causes of autism. I think recent discoveries that upwards of 25% of ASD kids have a mitochondrial /metabolic disorder, 50% have GI problems and an exponentially increasing number of ASD are regressing into the disorder are all more powerful discoveries than learning 3% of the genetic cause of possibly 1 of 100 variants or autism. However, comparatively zilch has been invested into these huge discoveries.

I have a theory called “Big Man, Big Machine.”  It is inherently more glamorous, exciting, clean and publisher friendly to conduct high tech driven gene research, develop new and exciting microarray technology and buy expensive MRI machinery, than actually interacting with autism families and learning about the biggest research gaps.  How many of these scientists want to learn about endless failed interventions, frightening and incessant diarrhea or life destroying regressions following adverse vaccination reactions. Because if, God forbid, that were to happen autism research $ would have to be spent on deciphering why the terminal uleium of so many kids look like craters on Mars, why Tylenol exacerbates adverse vaccine reactions, why children with families with a history of autoimmune disease are at the highest risk for autism and finally how the hell does a combination of multiple viruses and dozens of toxic (completely unresearched) adjuvants affect a babies’ central nervous system? Messy and controversial right, who needs that when we can bypass the needs of ASD kids altogether and stick with “Big Man, Big Machine” research. I don’t think these scientists intend understand how autism has truly morphed from a “highly heritable psychiatric disorder” to a form of environmentally triggered brain damage- much like a traumatic brain injury.

None of the genome data is showing us the mechanism that is causing the spontaneous mutations. What is turning on “these rare genetic variants?” Autism is endlessly heterogeneous. It isn’t like sickle cell anemia or cystic fibrous. There could easily be 100 variants of autism. 25 more years of sequencing genes still will not uncover the most important causation factors, nor will it halt autism’s relentless increase. I appreciate the authors’ candor when they said it might be decades until a drug is developed to treat some of the variants of autism. Unfortunately, we don’t have that kind of time. These are the study’s conclusions:

1) Autism risk genes are rare variants in the genome

2) Some new autism genes were discovered. Genes involved with cell growth, communications and genes that respond to environmental stimuli. Hmmmmmmmm. Autism involves genes that are responsive to environmental stimuli…

3) The genes appear to cluster around a specific biochemical pathway in the brain. Drugs could possibly be developed to recover the function of these pathways.

By Katie Wright

Dr. Susan Hyman  is the lead autism researcher at the University of Rochester and holds many important posts within the autism research community.  One of her main research interests is dietary intervention. At a time in which we desperately need innovative thinkers and original research on this issue, Dr. Hyman has spent 10 years summarizing the work of others as well as conducting a few poorly designed clinical trials. All of  Hyman’s studies are virtually the same, reaching the same inconclusive conclusions. Here are some examples. Remember you have paid tens of millions of dollars to learn this information.

2003 “Data supporting complimentary medicine should be scrutinized with scientific study…Families should discuss all proposed interventions with primary care providers.” Tell us something we don’t already know.

2005 “Complimentary medicine used for the treatment of autism is examined in terms of rationale, evidence and efficacy.” Another summary paper, nothing new.

2007 Taste and smell research also inconclusive. “Taste and smell research is needed to determine the neurologic basis of olfactory taste impairments.” No kidding.

2008 “Complimentary medicine commonly used for ASD…Review of current evidence. Some complimentary practices have evidence to reject them whereas others have emerging evidence to support them.” Another summary paper, nothing new.

2010 “There are many possible effects of diet including under and over nutrition that need to be scientifically investigated so families can make informed decisions about their child’s possible therapies.” Right back to the 2003 conclusions.

I still don’t understand how not feeding your child food that makes him sick is “alternative medicine.” The following is an account of how my family made our way to dietary interventions.

No one tells parents that things could actually get a lot worse after the autism diagnosis. My husband and I were told that once we got a high quality ABA/ speech therapy intervention  team in place we would see slow, sometimes very slow but certainly steady progress.

Hopefully Christian would regain his speech and other cognitive skills that he had lost in initial regression just months ago.

Well it did not work out that way. After finding some wonderful therapists, my family was distraught as Christian seemed to becoming more autistic with the passing of every day. Along with this latest regression came; what I refer to as the 4 Horsemen of Autism:

Diarrhea,/Constipation, Screaming, Head Banging and Sleepless Nights.

Anyone who has seen his or her child’s diarrhea burn a hole through a rug or a car seat knows what I am talking about. This isn’t about regular constipation either- ASD kids have been known to go weeks without a bowel movement. It’s incredibly painful and disabling. This is how parents end up trying dietary interventions.

By Katie Wright

I know you are thinking one of things is not like other…but I was actually glad to have to have IMFAR and experienced it for myself.

For years, possibly decades, parents have complained that IMFAR was an esoteric brain and gene conference peripherally associated autism…400 presentations on eye gazing, 200 social gazing, 100 on an infant’s grasp of eye gazing, genes, brain and genes, brain, genes and brain. Despite IMFAR’s proclamations of “exciting breakthroughs” few families felt any excitement and fewer children saw any benefit.

There is nothing in sight to stem the rising tide of  ASD cases. Even worse, a greater number of autistic children are suffering from serious medical problems, which have gone both unstudied and untreated.

Parents were pleased by the recent change in IMFAR’s leadership. After David Amaral was elected president many parents contacted him and expressed their frustration that their childrens’ painful and disabling medical needs had by ignored by IMFAR for too long. Imagine a breast cancer research organization spending all their time and money on genetic research and a treatment intervention that succeeded 25% of the time. I’m guessing that other 75% of women would be demonstrably unhappy- especially if they are doing the fundraising.

By Katie Wright

If you watched “Frontline: The Vaccine Wars” you probably learned:

1) Unregulated free speech is dangerous, especially the internet which is a major cause of the autism epidemic

2) Parents have access to way too much information

3) Pediatricians, not children, are the real victims of this phony epidemic

4) Parents who do not vaccinate are selfish, naïve and are putting the health of the entire Unites States of America, and possibly the world, at risk.

5) Pandemics are always a plane ride away, so don’t get on that plane!

6) Despite numerous reports to the contrary, are no conflicts of interest between the CDC and the vaccine industry. That is why we were afraid to discuss it on “Frontline.”

7) The risks of unlimited vaccination are infinitesimally  small, so small you don’t even understand how small, teeny tiny small, so small we won’t measure it or allow public access to adverse vaccine reaction records

8) Parents who saw the children regress after multiple vaccines are “confused,” “emotional and “looking for someone to blame.”

9) Ashland, OR is a super dangerous place, filled with crazies

By Katie Wright

The grants AS’ Scientific Advisory Committee have chosen to fund are alienating the community of families. Parents see the redundancy and waste in so many over financed genetic and behavioral projects at the expense of meaningful treatment, biomedical interventions and environmental causation research. Over and over and over again, when board members had the opportunity to fund an innovative researcher, someone outside the box, someone studying critical environmental factors, someone proposing biomedical treatments, they have chosen the same names and the same tired projects. This tiny review board is jeopardizing Autism Speaks’ relationship with the community of families, who have a right to expect better.

First let’s look at the scientific grants. $450,000 to studying Skank 3- genetics. $450,000 to study social processing. $450,000 to study Fragile X mutant mice- genes. $265,000 to study Fragile X genetic links. $449,000 to study early identification in infants- the 10th such AS study. $450,000 to do a study on the outcome of ASD adults in order to identify their needs (good but ask the parents!) as well as a study on the effects of loss of sleep.

All these grants are modeled on the paradigm “autism is genetic” and this committee’s belief that dozens of early identification studies are an appropriate substitute for research helping children living today with autism. Social processing, visual processing, face processing are dated over researched tools for studying autism as a wholly heritable, genetic and behaviorally mediated disorder. There is nothing innovative here. A number of GI studies were rejected. An important biomedical treatment study for children with regressive autism was rejected as well as meaningful and under financed environmental research. No research on adjuvants, autoimmune interventions, severe food allergies or the urgent and immediate needs of ASD children and adults with severe chronic illnesses.

The study on the effects of loss of sleep isn’t bad, it just isn’t great. Don’t we already know (or better yet- live with) sleep deprived children and see everyday how it hinders their academic progress? Rather than describe what we already now, why not invest in research that would address the biological causes of wakefulness (often pain) and research cutting edge interventions?

The scientific advisory board is betting the house that millions of dollars invested into Fragile X, Retts and Tuberous Sclerosis will somehow, some way, some day benefit the other 90% of ASD children without these defining chromosomal defects. Reasonable people can agree to disagree on this research, but by any stretch of the imagination the sheer amount of Fx, Retts and TB grants is excessive. How could they fail to realize that?

Your kid is in unbearable gut pain? Tough luck. Your child regressed after multiple vaccines? Too bad. Your child is chronically sick and there are virtually no doctors or interventions available? Sorry. You are terrified to vaccinate your second child because you don’t know if the vaccine schedule is safe? Sorry the Scientific Advisory Committee can’t help you.

By Katie Wright

Autism Speaks’ co-founders, Bob and Suzanne Wright, joined me in attending the Baltimore DAN! Conference. Also in attendance was Dr. Anita Sostek, AS grants administrator and Pat Kemp, AS Director of Communications. Thank you everyone for coming to DAN!

Bob and Suzanne were delighted to meet so many amazing parents, researcher and clinicians. My parents know how difficult it is for ASD parents to even leave house and were moved by the site of a thousand parents spending money they can barely afford on babysitters and travel expenses in order to learn more about how to help their children. When scientists attend these conferences they are re-imbursed for their expenses- not autism Moms and Dads!

By Katie Wright

Dr. Poul Thorsen is one of the world’s most influential and prolific autism researchers. It is currently alleged by his former employer, the University of Aarhus, that Thorsen stole nearly $2 million in grant money and lied about his secret dual employment at Emory University. If true, Thorsen is a clearly a person devoid of professional ethics.  Given the depths of his alleged massive professional misconduct, the veracity of Thorsen’s autism research studies are now in doubt. Would you trust the research or scientist who would lie, steal and exploit others in order to advance himself? Me, neither. Would you trust that person with the health of all American children? No way, but the CDC and the AAP do.

Thorsen is Denmark’s most celebrated and successful autism scientist and certainly one of Europe’s top researchers.   The idea that Thorsen was merely one of many little known authors listed in the “Pediatrics” 2002 and 2003 Hg and autism prevalence studies is preposterous.

To understand Thorsen one must examine the organization he controlled, the North Atlantic Neurological Epidemiology Alliance, or NANEA. NANEA was a bizarre cult like research organization, financed largely by our tax dollars, courtesy of the CDC. NANAE co-workers describe Thorsen as ruthlessly ambitious and consumed with self-importance. Gaining more recognition, garnering more CDC money and expanding his mini kingdom were top priorities.

The Danish newspaper “Information” recently interviewed many of Thorsen’s co-workers and what they had to say sheds a great deal of insight on autism’s greatest confidence man.  A NANEA employee, Liesel, described Thorsen as the “leader and complete ruler” of the org. He cultivated a sense of profound entitlement and importance around NANEA. “ He asked NANEA scientists to wear special badges, shirts and epaulets. Clearly, wearing research costumes to work is strange. However this practice is eerily similar to the CDC with their epaulets, special caps and uniforms. Interesting!

By Katie Wright

What kind of human being makes money by testifying against disabled children with autism?

Dr. Eric Fombonne
Dr. Catherine Lord
Dr. Bennet Leventhal

These parasites regularly take the stand in Vaccine Court in hopes of preventing sick autistic children from receiving financial compensation for their injuries. When I worked on forensic child abuse cases we had a word for these psychologists and doctors who were paid to testify against children.  I’ll leave that to your imagination.

It is a free country and these doctors are not breaking the law by making a few bucks on the backs of kids. However, I think their “work” as anti- child professional testifiers has been insufficiently discussed and deserves a good public airing, don’t you?

Dr. Catherine Lord appears in vaccine court with great regularity. Like Fombonne, Lord appears to relish the opportunity, as a psychologist, to diagnose children she has never met and draw (erroneous and unqualified) conclusions about the cause, onset and severity of their medical disorders. Remind me the next time my son’s GI disease worsens and he loses language to make an appointment with a good child psychologist. Dr. Bennet Leventhal not only professionally testifies against children but also is a paid speaker on the pharmaceutical speaking circuit. Leventhal’s org also accepts huge amounts of money from vaccine makers.
No one is forced to testify against children in vaccine court. Most doctors and researchers with even the most rudimentary of scruples will refuse such an invitation. But not Dr. Eric Fombonne! He probably leases out a condo near the courthouse as a business tax write off.  It is a wonder he has time for anything else!

Isn’t it interesting that after all these years of testifying against disabled children, that the tables have turned and Fombonne is now a defendant, charged with serious academic misconduct by his employer, McGill University. Fombonne is under investigation for:

1) unlawful access to confidential medical record and blood samples of children in his 2006 “Pediatrics” article

By Katie Wright

“There are groups out there that insist that vaccines are responsible for a variety of problems, despite all scientific evidence to the contrary. We (the office of Secretary of Health and Human Services) have reached out to media outlets to try to get them not to give the views of these people equal weight in their reporting.”
See Reader's Digest HERE.

That’s right. Kathleen Sebelius, the Secretary of HHS, has asked newspapers, magazines, television journalists, who knows who else- specifically NOT to listen to parents and scientists in the autism community, not to respect their concerns, not to take seriously the condition of chronically ill children with autism and to disregard a growing body of evidence questioning the safety of our infant and toddlers' immunization schedule. If I have got anything wrong I would love to hear a tape or see a transcripts of these media “outreaches.”

Pretty frightening stuff. Thank you to Jake Crosby who uncovered this frank and disturbing exchange between Arthur (autism is not so bad and there is no increase anyway) Allen and Ms. Sebelius.

I am taking Ms. Sebelius at her word. Ms. Sebelius has unilaterally said that she knows that every single American parent who saw their child regress post vaccination or experience a severe adverse reaction is wrong and she knows better. Ms. Sebelius has ordered, suggested, beseeched, implored (?) American journalists NOT to “give these people (anyone concerned with vaccine safety) equal weight in their reporting” because she has decided by informal governmental decree that the debate is closed?

Sounds like something that would happen in a communist dictatorship, right? Was there a similar decree when “citizen dissidents” questioned the safety of hormone replacement therapy for women? Was the media instructed to ignore those nuisances who were suspicious of a long denied link between hormone therapy and breast cancer? Did the HHS order a first amendment crackdown of those trouble-making women who had long complained that Fibromalgia was a real disease and not a psychosomatic condition. Menaces everywhere who dared to question medical authorities! They must be silenced! You have got to be kidding.

By Katie Wright

I recently came across a press release from the Autism Speaks High Risk Baby Siblings Research Consortium (BSRC) about their recent meeting to examine autistic regression (HERE). Naturally, I think this is great; this issue has been ignored for so long. How terrific that a mainstream research body delves into this subject!

For anyone who does not know, my son Christian had a horrific regression at the age of 2. The mainstream medical and autism community could offer no help or insight whatsoever in 2004. The suffering is these medically complex kids is intense, the interventions few and the research on them practically non-existent. If it were not for the help I found from DAN! Practioners my son would still be living in pain.

So I eagerly read the official synopsis of this BSRC meeting. My enthusiasm quickly cooled. It felt like 2004 all over again.

I have researched regression’s causes and treatments almost everyday since my son became sick. I hate it. I received two Masters in Counseling Psychology. I hated all the stats and research methods courses. I thought: “I am going to work with people, I will never need to know this stuff again!” Well now the joke is on me. It turns out I no longer work clinically at all, but devote all my efforts to research. Almost every Mom with a child like mine does the same. We are pretty much in this alone and it is up to us to figure out why our kids regressed, became ill and how to heal them.

BSRC’s recommendations for regression related research includes: eye-gazing coding, on line diaries, eye tracking and EEGs. It could hardly be worse. First of all it is well known, well documented that when children are regressing their eye contact becomes poor. Autism research has been there (invested millions in this already), done that, researched that, reported on that- time to move on. EEGs always sound good but they reveal useful information about 1% of the time. Putting a toddler through the nightmarish processes of a 24-hour EEG needs to yield better results. So few neurologists understand how to look for the very subtle spikes and merely tell parents, “Everything is fine.” Christian had terrible absence seizures. It was actually obvious. He had 4 EEGs. Finally someone found the subtle spikes but guess what there is almost nothing you can do about it anyways. Back to square one.

After that I am thinking, “Where is the proposed research on sibs developing GI disease, night sweats/ night terrors, severe eczema, adverse vaccine reactions…issues all closely associated with regressive autism?” More than any other form of autism, regressive autism is a total body disease: kids have brain inflammation, immune dysfunction and develop colitis like GI disease. Tracking eye-gazing could not possibly be a lower a lower priority. Ask any family.

By Katie Wright

A few months ago I wrote to the new Director of the NIH, Dr. Francis Collins, and asked to meet him with my parents, Bob and Suzanne Wright Dr. Collins graciously responded saying that he would very much like to have a meeting with us and some autism organization advocates.

My main reason for the request is because the majority of autism families do not feel heard by IACC nor are they fairly represented among the public members.  Only one person of the 20 odd members on the committee has any experience at all with the all too common needs of children like mine, Lyn Redwood. Meanwhile there are committee members from the Dept. of Deafness, Medicaid and Substance Abuse all casting votes for and against  (and it is mostly against) important scientific research they cannot possibly understand. This is absurd.

The lack of services for ASD people of all ages is a critical issue facing our community. Expertise in planning group homes, job training or respite care does not translate to scientific knowledge in stem cell research, oxidative stress, gastrointestinal disease or immunology. Obviously the same holds true for the neurologists on the committee regarding their limited insight into special education or adult services.

In this disparate roomful of scientists, parents and aspergers adults, there was agreement on two things: IACC is failing, it moves incredibly slowly, is way too bogged down with bureaucrats, has yet to embrace innovative research and autism organizations are virtually unrepresented. There was also complete agreement that IACC has done a poor job addressing the tremendous and immediate service needs of children and adults affected by ASD. In order to do justice to both autism services and autism research we need to separate IACC into 2 committees: services and research. That way each subject will have a committee staffed by people with the appropriate expertise.

An even better option is to abolish IACC and form a virtual Autism Institute, much like the HIV Institute. That way we would attract federal members with deeper and more current scientific understanding of autism.

One of the most serious problems with IACC is the total absence of clinical specialists.  Dr. Yvette Janvier, serves as a “public member.” Last fall, Lyn Redwood was advocating for an investment in GI research after speaking about the recent death of young ASD girl who died due to an untreated impacted bowel. Dr. Janvier’s immediate response was not one of compassion, concern or even respect. No, Janvier literally said, “Phhsssss! Anyone could have diagnosed that! In 20 yrs of (neurology) practice I have never seen a sick ASD child or a child with these ‘immune’ problems!” Javier went on and on about how IACC should not focus on such “rare” problems like GI disease or immune dysfunction.