NYT Reports CDC Failed to Properly Screen Vaccine Advisors for Conflicts of Interest
Keeping Autism Neurodiversity Out of the White House

Katie Wright: The Disconnect Between Autism Research at NIH and Parents' Requests

Disconnect By Katie Wright

 Autism Families Speak to the NIH Part I

For over 2 years many of us have had to listen to the myopic and inert prevarications of the members of the Interagency Autism Coordinating Committee (IACC) as they discuss autism research. It has taken them over 2 YEARS to develop a strategic plan. In the time they have spent talking autism rates have increased from 1 in 166 American children to 1 in 91. Last week the director the committee, Dr. Tom Insel, infamous for his sudden and unethical removal of pre-approved vaccine studies, urged the committee to “Be bold. This is your chance!” Insel is clearly feeling the heat to accomplish something, anything, other than merely engendering more anger and antipathy from the autism community. In response to Insel’s urge for bold action committee members like Dr. Linda Birbaum (NIEHS), Dr. Ed Trevathan (CDC) and Dr. Jennifer Johnson (ACF) spent the next 30 minutes arguing about minutiae, like whether or not to write “Ethnic and racial minorities” or just “ethnic minorities.” Another parent listening in e-mailed me saying she wanted to “gauge her eyes out.” I replied, “me first.”

A few months ago, IACC asked the autism community for feedback regarding their Strategic Plan. The process for providing feedback was onerous and time consuming. There were about 50 questions. Still over 500 people, mainly very busy parents, took the time to complete the questionnaire. It took me almost an hour. The responses are incredibly thoughtful, intelligent and prescient. Unfortunately, public input carries no weight at all within IACC and I doubt if most members read the feedback. Only Lyn Redwood ever refers to the public’s queries or suggestions. The rest of the committee displays no interest in feedback that dramatically diverges from their largely academic and genetic paradigm of autism. Considering that almost none of the federal members actually have ASD kids, treat them or research the subject, I suppose that isn’t surprising- only sad.

In the draft of their strategic plan IACC highlights the following research prorities:

Eye gazing research
Face training computer programs
Parents with psychiatric disorders
Why early intervention is good
Brain scanning
Tuberous Sclerosis research
More genome and genetic research

Compare the above list of torpid, sluggish and mainly academic priorities to the kind of research autism families said they would like to see IACC fund:

“Research biomedical interventions.”  That occurred about 50x

“I feel ABA is limited and a new generation of treatments can have a global effect on ASD kids’ quality of life and is ignored.”

“Diet needs to be addressed. It is non-invasive, healthy and doable.”

“Investigate the effects of (commonly prescribed ASD drugs) on developing brains.”

“Unbiased analysis of DAN! Protocols.” Variations of this appear 25x

“Re-instatement of the previously approved vaccine studies.” That occurs about 100x

“Prioritize issues which are greatly harming ASD children and causing them pain.”

“Research sensory integration and visual and auditory therapy.”

“Examine children with late age regression.” Variant of this occurs 25x

“Research on vaccine injury MUST be fully studied.”

“Remove bias towards prenatal onset and include postnatal onset and study regression.”

“Study vaccines. Study the immune system!”

“Study rates of vax and unvax. Use homeschoolers.” This appears about 25x

“Concerns voiced by parents, physicians and scientific community regarding lack of complete, unbiased (vaccine –injury) investigations. Vaccine induced brain damage, seizure disorders, acute encephalitis.”

“Priorities should reflect the urgency of goal to restore health to those sick autistic children.”

“Study vaccine schedule, vaccine components, multiple vaccinations.”

“Environmental research is dramatically underfunded.”

“Examine the role vaccine play in the chronic diseases of childhood.”

“Conduct meaningful research into autism as a disease that effects the whole body and not just a ‘mysterious’ disorder to treat with psychotropic drugs.”

“There has been millions spent on genetic research without much to show for it.”

“Why aren’t you holding Town Hall meetings?”

“Study gastrointestinal, allergic, dermatological and mitochondrial dysfunction…Objective evaluation of medical treatments and the effects of such treatments on autism.”

“Study brain barrier and gastrointestinal connection.”

“biomedical, bio-medical, bio-medical.”

“Study role MSG and glutamates in vaccines. Study research of Dr. Richard Deth and Dr. Russell Blaylock.”

“We need to stop pouring money into genetic research and make environmental research a priority.”

“Study role of bioaccumulation of toxic elements Ca/Mg/Zn/Se/Fe/Zn..Study inflammation and oxidative stress…gastrointestinal issues in ASD. Not just by phone interviews.”

“Vaccines are a controversial issue, complicated by the fact that there are few research studies into whether vaccine injuries lead to long term learning disorders. While I do not support a major addition of vaccine research I feel that some researchers have closed their minds.”

“Blood, fecal, and urine treatments pre and post tests.”

A funny response: “Get off your ‘the research has been done’ High Horse…It hasn’t.”

“Need for crisis mode similar to SARS.”

“Research on co-occurring medical conditions: metabolic abnormalities, oxidative stress, pathology (constipation, diarrhea, ulcerative colitis, allergies and underlying medical abnormalities common in this population).”

“Prioritize research in terms of medical, not psychiatric…Focus on underlying medical conditions.”

“Toxicology! Why is my child sick all the time?”

“Study gluten sensitivity and the leaky gut. THIS AREA IS SO UNDERSTUDIED.”

“Inclusion of stem cell biologists.”

“Research oxidative stress…immune dyregulation and research chronic viruses’ role in brain inflammation and autism.”


“Ask the parents. They watched their beautiful children disappear.”

Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half.  Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.

Comments

hoxtonpaul

All you do, is talk to yourselves and hurt more and more. All you can do, is upgrade the functionality of children. All you ignore, is adults like me who are the truth.

All you hear, is your own voice. All you can believe, are the reflections of your own wills and desires.

All of this will eliminate MMR & introduce staggered vaccine schedules and reduce/eliminate environmental mercury, and restructure vaccines.

All of this will, of course, reduce autism levels. Because for all of you, THERE IS NO OTHER OPTION. THERE IS NO PLAN B, IS THERE?

All that can be done right now, is to delete this post and pretend it never happened.

Steven Michaelis

You may be interested to check out the Free Sound Therapy Home Programme available from Sensory Activation Solutions. Their Auditory Activation Method builds on the pioneering work of Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training) and has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

There is no catch, it's absolutely free and most importantly often effective. Check it out at: http://www.uk.sascentre.com/uk_free.html.

nick

After reading all of these blog posts I think a lot of you would appreciate this website - http://bit.ly/6s1G3J - It's called rethink autism and it offers hundreds of ABA-based video lessons and an entire online curriculum that you can subscribe to and access anywhere anytime. The people behind rethink autism are really onto something great and innovative here.

James' mom in MN

Wow, what an earthshattering list of "priorities" from the IACC. I am sure that every parent with a child on the spectrum is just dying to know why early intervention is important or see one more study about eye gazing. This is how our tax dollars are being spent? Clearly this group of people needs to actually spend some time with children with autism (though they'd have to get on an elevator with the child first) and their parents. One day in my house and they could answer most of their priority list and create a new one with issues that actually matter and might be useful. I bet even the APA can tell you why early intervention is important . . .
This is why we won't be waiting around for the government to save our children!

Anne Dachel

I'd like someone somewhere to SHOW ME THE ADULTS WITH AUTISM--real autism where adults behave like the dozens of autistic teenagers I now know.

Thomas Insel is a complete failure and shouldn't be in charge of anything.

If suddenly thousands of seeing children become blind, Insel would be hot on the trail of the "blindness gene."
Anne Dachel
Media

Just another mom

Even this week's press release for newborn screening is advocating testing before vaccinating - recognizing that all of our bodies are not created to react safely to the current schedule or recommendations.

The IACC needs move quicker to include REAL biology and microbiology, neurobiology, metabolic, and mitochondrial, and immune interactions to the plan ASAP.

Thanks Katie for keeping us informed.

cmo

"Science" would still be wondering what causes Polio if the IACC was in charge in the 1950's...

Teresa Conrick

"Eye gazing research
Face training computer programs
Parents with psychiatric disorders
Why early intervention is good
Brain scanning
Tuberous Sclerosis research
More genome and genetic research"

Thanks, Katie for you continual concerns on this matter. This is just unbelievable denial, ignorance and connected to all of it is greed. There is much money to be made in keeping autism a "puzzle" and the treatments for recovering our sick children off the beaten path.

How can you get millions for genetic reseach if these kids are making progress with diet, anti-inflammatories, and chelation. Genes don't necessarily get better so mums the word......

Bullshit to that and we are not going quitely into the night!

Katelyn'sMom

Why won't the people who are in charge of autism research LISTEN to parents of autistic children and take them SERIOUSLY? This is an epidemic, yet nothing productive is being done. Why is autism not given the same respect and priority as other diseases, especially since it is more widespread than many other diseases ...that ARE taken seriously??? Hopefully in my lifetime...or more importantly, in my daughter's lifetime...

Kathy Blanco

Why is the obvious not so obvious to these people, could it be, they DON'T want to look at it, because, it implicates products, services, recommendations and regulatory agencies siren calls of "they are safe" if not bottom lines to companies? Could it be, it would hamper the gross national product industries thusly the hard push to not show the real science? Could it implicate key people in key positions of leadership all the way up to our military complexes? Could it mean jail time? Investigative reporting that reveals undercuts and deals, nasty ones at that? Could it stir the ire of the public, which already grows apathetic towards any change in our soceity, though are dumbed down to think that "we are looking out for you? Tell that to the news reports last night that the interest in the H1n1 vaccine has wained, as they stir up "more deaths" and "scare tactics"...what do I live in, NAZI GERMANY propogandizing eras?

Could that be the reason I have grown weary and apathatic at working with these agencies, even though they produce a murmour of change in our community, a whisper of change, while satisfying our need to advocate? I am done with these people...I am now on to the real hit the pavement ideals....that is...you talk to the moms themselves, the consumers...the very people that make the decision, or not, that they will vaccinate, or subject their children to "safe" practices in medicine. I know at that level, I can affect MORE change...than a hampered misaligned cockamamee study. Private sector researchers interested in opening up the pandora's boxes, is all I am interested in...not a government run, hush hush, "let's not tell the public" about how evil we are agencies.

I don't like hitting my head against a brick wall over and over...but it seems like our community does...let's get real with the facts...unless we fund independent researchers, publish their results in major journals (and good luck with that), we will never prove what happened to our kids....at least on a grand scale....

I prove it everywhere I go, I open my mouth and tell mothers what happened to me, with a warning cry it may also happen to them....deer with headlights is the look I get...but sooner or later...it's the look of anger, and of resolve. If that isn't your mission as a mother advocate...then I guess you can go to these meetings and beat your head against a brick wall and have at it...not to say I don't appreciate your efforts...but I have been there, done that.

Sarah

Studies like eye gazing drive me nuts! I recently found a decent study on methylation, environmental and genetic factors in autism done by the Department of Pharmaceutical Sciences at Northeastern University. Ironic huh? Even they can do a better job than the IACC.

Here's the study:

How environmental and genetic factors combine to cause autism: A redox/methylation hypothesis

http://www.ncbi.nlm.nih.gov/pubmed/18031821

Benedetta

When I filled out the hour long thing on the internet, I put at the end of every paragraph a sentence that said - and Tom Insel brother to Richard Insel maker of Hib B needs to resign.
I guess I made things worse!
Katie you are brave, and more important determined. That is rare and I am thankful you are working on this cause.

bensmyson

Im with you Bad apple. Katie you must never sleep. Thanks for being the watchdog on all this.

I'd love a town hall situation. I'd travel 300 miles to pack a civic center.

I saw an article about a non-profit that held some sort of avoiding-foreclosure thing. They had 300 workers set up at tables helping out thousands of homeowners for like 4 days. Where is that sort of advocacy for our kids? Do something like this for autism, then bring in the IACC and dump the data collected in their lap and ask them what they intend to do about it. Thousands of families in the audience wanting answers.

Casey

How can they ignore THAT much parent input??!!

I mean REALLY???

Susan Cranmer

Lets save some of the research funds. I can tell you right now what causes psychiatric disorders in parents. It is caused by groups like the IACC when they ignore the real problems of our children and stand in the way of trying to find real answers that result in real recovery.

Bad apple

I spent a minute or two on the phone listening in on an IACC meeting. It was all I could take. There must be something wrong with me though because I wanted to gauge THEIR eyeballs out. Uh-oh, I guess there's that psychiatric disorder they're looking for...

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