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Ring and Insel: Dream Jobs Autism Parents' Nightmares

Keep-calm-and-turn-your-backBy Katie Wright

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

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

Ring AS
Rob Ring

 Oh, the drama!

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

Thomas insel
Tom Insel

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

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

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

Insel and Ring finalize all grant decisions, choose almost all their staff and all members of their scientific advisory board. They also have the opportunity to choose preferred (you better be VERY conservative) grant reviewers. Most importantly they set the research agenda. If a research subject we believe is very important, even critical to our child’s most basic needs, is ignored – tough luck, you have no opportunity for redress.

So in this context I was appalled, but not surprised, when the Dr. Insel announced the new NIH ASD “biomarker” project.  Autism Speaks and the Simons Institute were involved in the selection of this study. The Simons Institute is funded by the family of Dr. Jim Simons. Their narrowly genetic research agenda is so disappointing but they are spending their own money. This $28 million eye gazing study masquerading as an autism  “biomarkers” project is just galling in its futility and naiveté. Measuring where ASD people look does not equal a “biomarker.” It is just dumb. And if being a pointless exercise were not bad enough there have already been 800 studies on autism and eye gaze! Imagine if there were 800 studies on whether or not slamming your hand in a door would hurt and then the NIH conducts a hand slamming “biomarker” project in which they decide to fund more studies on the effect of slamming one’s hand in a door. You know circular reasoning? Well this is circular stupidity.

$28 MILLION to study eye gazing and EEGs. It is an unfathomable waste of precious resources.

Just to be clear there are already over 10,000 studies, yes 10,0000, on EEGs of ASD people. Does anyone backing this study even understand what an EEG involves for someone with autism? Unless an ASD person is VERY HF and can consent, this awful endeavor is truly an ordeal for someone with autism. First of all it involves attaching about 50 electrodes, with glue, to a person’s scalp. The vast majority of ASD people have sensory issues and are uncomfortable with strangers touching them and are distressed to be essentially restrained in the process and the duration of the experiment. After the electrotrodes are attached, the person is virtually tethered to the EEG monitor for however many hours required, at least 24. Because of my son’s seizures Christian has been through this 4 times. These EEG events are among the longest 24 hours of my life and I am sure his. Christian, like most ASD people, hated every minute of it. Despite the kindness of technicians and the medical professionals I see EEG for the sake of research and research alone as borderline cruelty. Additionally when is enough enough? There are already 10,000 ASD EEG studies and the yield of useful information is so low compared to the  sacrifices ASD make in the process.

Here again Insel, Ring and a handful of other powerful men, none of whom have a child on the spectrum, unilaterally decide how to spend 1 in 8 of all NIH ASD research dollars. No public discussion, no debate, nada, rien, zero, zilch…it is a dictatorship of the bureaucratic.

Is it just me, or have you too grown to hate that ubiquitous term “personal medicine?” To me it really means ultra academic genetic research that may OR may not pay off in 25 yrs. Dr. Insel is true believer in Obama’s Brain Project and “personalized medicine.” It seems more like “personalized  pork” projects for geneticists and neurologists and offers precious little to the consumer. I am so tired of being sold this project. Why wait when we can subtype heterogeneity and personalize medicine now? Study the regressive ASD subtype, study the GI/ Immune subtype, and study the classic ASD subtype and the HF subtype. Again if one spends anytime at all around people with autism subtypes are so obvious. Insel speaks as if the heterogeneity is some mystery of the ages and we have no idea at all what major groups of ASD people exist.

The deeper problem is that academics like Ring and Insel are still studying autism as if it were 1990. They believe that the primary problem with ASD is social impairment and repetitive behavior and are looking for ways to drug these problems away. We know it doesn’t work like that in 2015. These symptoms are merely manifestations of deeper biological problems. A real ASD biomarker project would employ a multi- scale multivariate approach. A real biomarker project would study each participant’s: metabolics, immune profile, microbiome, sleep, diet, vaccine history, developmental trajectory from birth to 2 and possibly genetics. Such a study would yield REAL information about the causes of problem behavior. Afterwards, yes, truly “personalized” interventions would be possible.

Autism research needs 21st century leadership, not the also-rans of eye gazing devotees.

Scientific leaders must listen to and stay actively engaged with the needs and priorities of actual ASD families. We cannot afford to watch Ring and Insel fund $28 million eye gazing part 2. It is time for meaningful, independent, consumer oversight of our tax dollars by the biggest ASD organizations (not just AS and Simons), such as TACA, the National Autism Association, and Generation Rescue. I promise if TACA, NAA and Generation are involved no more nonsense and waste and instead we will progressive, life improving science.

Katie Wright is a Contributing Editor to Age of Autism.

Comments

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Kate Johansson

Autism seems to be BIG BUSINESS--just like cancer is big business. Apparently it is not in the best interests of the multinational corporations and their stock holders to find a cure or preventative for autism--just like there is no incentive to find a cure for cancer. People who are out there trying to find cures and tell the truth are being murdered.

Denise Anderstrom Douglass

You are a hero to the rest of us, Katie Wright. Thank you.

Angus Files

JAIL Tom Insel 2016

MMR RIP

Sophie Scholl

Kevin - we will be buying your book !

Thanks for your hard work .

Twyla

Thank you so much for your reporting, Katie!

Maria Dwyer

Thank you Katie. Thanks to these jerks, I stopped waiting for effective interventions years ago and like everyone else out there starting focusing on experimental treatments. This past January we took Colin out of school in Queens and my husband Tim took him along with his two younger brothers to Newport Beach, CA for a 4 month treatment protocol at The Brain Treatment Center. It didn't work and the whole thing cost us $40K. Is this the life we are reduced to as parents of children with autism? Will it ever end? Thanks again Katie.

Act-up with leah

Sending blue postcards with a picture of a whistle and the word subpoena to Congress?

Shelley Tzorfas

Yes-People with Autism benefit immensely with SIMPLE eye exercises to get the left eye and right eye to 'Team up' or work together. After doing these simple but important eye exercises many on the spectrum will begin to make eye contact. Why? Because when the eyes do not work together-things will appear to move so it is hard for an Autistic person to look at the eyes because there are 2 eyes that will be visually moving about whereas there is one chin-visually more stable. Now-can I put some of their wasted research money to good use to teach this incredible information to people in the field who care about ASD kids.? "Recovering Autism, ADHD, & Special Needs."

@Leah

What about flooding the CDC or NIH with massive blue light?

Kevin Barry

Excerpt from Vaccine Whistleblower: Exposing Autism Research Fraud at the CDC.

"(Bob) Wright knew about the audio recording of Dr. Thompson and Dr. Hooker’s phone conversations as of August 2014. Six months later, on February 5, 2015, Autism Speaks released the following statement by their co-founder Bob Wright and their chief science officer Rob Ring:

“Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism. We urge that all children be fully vaccinated.”
Rob Ring, Chief Science Officer, Autism Speaks

“Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools.”

Bob Wright, Co-Founder, Autism Speaks

Autism Speaks claims to already know that vaccines are not related to autism, so they clearly cannot be trusted to research any aspect of vaccine safety."

http://tinyurl.com/nnt68tr

Katie Wright

I just want to know how a $28 MILLION autism grant is designed and funded with zero public input?

This inane and useless study eats up an eighth of the whole research budget.

I remember Dr. Ring speaking vaguely about meeting with Insel about this but nothing about numbers or public input.


Neither one of these academics has any business making such enormous decisions in a total vacuum. This project was not in the last IACC plan and does not reflect a concern expressed by even one of the many do dozen stakeholders who spoke to IACC.

Shame on Insel and Ring for basically misappropriating research funds for research families want.

D

go Rand

What is the pay scale for Insel for his IACC work ???
How much has he been paid since the last meeting over a year ago ???

Out of tens of thousands... who might have been selected for the IACC position, they select someone ...who's brother... created the Thimerosal preserved hib vaccine,

...added to the infant schedule in about 1990, which certainly was part of the cause of the Autism epidemic.

Greyone

Leah, thank you for reminding me about the giant condom.
It makes me laugh every time I think about it.
Even though I know you,re right linda1.


http://blogs.poz.com/peter/archives/2008/07/in_memory_of_je.html

Sylvia

Thank you so much Katie for continuing to shine the spotlight on the waste and unaccountability within the top levels the NIH and AS. I very much appreciate your work to inform the community of what is going on (and what is NOT going on) within these groups that control so much power and money.

@Leah

You are right. There needs to be more public exposure in creative and big ways.

barbaraj

STATEMENT:"The Working Group recognizes that its recommendations may have broad and deep scientific and programmatic consequences, and many research, advocacy, and governmental constituencies may be impacted. The Working Group further recognizes that the response from professional organizations, societies, academic leaders, investigators, and the public may be mixed – some negative, others supportive."http://www.nichd.nih.gov/research/NCS/Pages/researchers.aspx ..I've been clicking around here all morning, and I'm pretty sure I am slow in finding this, and have to ask "why did they shut this study down???" What does their statement suggest? I was so hopeful that the facts of vaccine injury would be too compelling to overlook and this nonsense of denial would end quickly for the safety of future generations..

Linda1

Yes leah,
Except America has changed significantly since the 1980s. If in 2015 you try putting a condom on an elite's house you'll find yourself tazed, arrested, shot, tortured, and/or you just might disappear, and the media will either look the other way or report the incident to make you look like a heinous criminal, an enemy of the state. Orwell's 1984 really should have been titled 2015.

Jill

Thank you Katie. What the heck is Insel doing with all his time? Who does he actually report to? If he is an unelected official, someone above him must be elected? Maybe? Just thinking out loud. This is so frustrating to be so powerless over money raised by our families.

leah

This situation really needs some wild political action. I saw a film recently about Larry Kramer and Act Up where to get results on AID treatment in the 1980's they were putting a giant condom over some bureaucrat's house. Insel and Ring are not getting the point. They need to be very publically called out.

Sophie Scholl

Insel & Ring , they both know the cause of autism .
They have bosses that they report to .
The instruction is simple , persuade as many gullible dumbass parents that this is a genetic condition that has always been here . Their jobs are to cover-up the man-made Autism Pandemic . Their jobs are to allow the neurological maiming to continue globally (how can this ever have been just about profit & $) ?

Insel & Ring are guilty parties . Make no mistake .

Patience (Eileen Nicole) Simon

I was a student at the Boston University School of Medicine at the same time as Dr. Insel. My interest was autism, which very few people knew about. So I worked with professors whose interest was schizophrenia. I commented on AoA a few days ago about the similarities between autism and schizophrenia.

The brain must be the focus of autism research. I will continue to try to be heard on this subject. I have submitted many comments for the IACC Public Record. Oral and written comments are available online at the Meetings and Events link on the IACC website.

Evidence of how the brain is damaged by asphyxia at birth has been neglected for decades. I will continue to point out the research of WF Windle, S Kety, and L Sokoloff (1959-1981). This was the subject of my dissertation research. Lookup N Simon and EN Simon with keyword autism.

I could not get funding to continue research, and returned to my former career as a software systems engineer, which was easier to manage with my children's day-care and after-school programs. My engineering perspective has been useful in considering how circuits in the brain are disrupted in neurological disorders like autism.

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