IACC's Insel Lives!!!
By Katie Wright
A month ago Dr. Tom Insel, director of the NIH’s Interagency Autism Co-coordinating Committee appeared in public at an Autism Speaks event. What a surprise! We, the community of ASD families, have not seen Insel at an autism event since 2014.
The last IACC meeting was almost one year ago. Since that time Dr. Insel has yet to announce the date for the next IACC meeting or even the member roster for the new 2015 committee. 2015 is more than half over so you can see how high priority autism is for Dr. Insel.
Rob Ring had asked Insel to discuss NIH ASD research “progress,” on a public panel. I know, I know, you are laughing. And yes, when asked specifically what progress the NIH has made regarding autism Insel’s answer was, you guessed it, early intervention! Sure that is the same answer Dr. Insel gave in 2000, 2001, 2002, 2003….you get the point. Insel really sticks to that script.
It is disappointing that AS’ Dr. Rob Ring did not use the opportunity to ask Insel why he has failed to hold ANY IACC meetings in 2015. Ring holds a seat on IACC and his job is to represent the community of ASD families. Ring should have been asking Insel tough questions, not softballs. Ring’s job is to represent our children (who, by and large have no voice), not to be Insel’s pal.
We did our part. Year after year ASD family members nominate the same excellent candidates in hopes that an IACC seat is given to someone who actually represents a large autism advocacy and service program. Year after year we have been disappointed as Dr. Insel instead appoints members of an autism comedy troupe, assistant professors from colleges no one have heard of, former do nothing CDC bureaucrats who barely show up…
But I digress. In my efforts to advocate for better stakeholder representation at IACC I have learned an important lesson. Unelected bureaucrats are simply not accountable to the public. Public, smublic!
You know what? Being the unelected director of NIMH is kind of like being a president of life. No elections, no deadlines, work when you want to work because you cannot be fired…. Boy, I wish we all had it so good!
Maybe, when Dr. Insel feels like it, or when he has spare time Insel will re-adjourn IACC? Until then tell your ASD child that the NIH is doing great work on early intervention! I am sure he or she will be thrilled.
Katie Wright is a Contributing Editor to Age of Autism.
Katie, this morning I sent email to Dr. Susan Daniels at OARC (Office of Autism Research Coordination). She replied a half hour later that members for the new IACC have been selected and notified. She anticipates a meeting late next fall, with an announcement a month in advance.
I responded with a request for a requirement that public comments be discussed. I suggested that comments citing evidence of brain injury should have the highest priority for discussion by the committee. I pointed out that evidence of similar patterns of damage in the auditory pathway have been reported for asphyxia at birth, prenatal exposure to valproic acid, and 15q duplication.
Brain injury should be the focus of research on vaccines as a cause of autism. Mercury, lead, and other toxic substances also damage the auditory system of the brain. I have suggested on AoA that subacute sclerosing pan-encephalitis should be investigated as a possible injury from live measles vaccines.
Brain systems (auditory, vestibular, basal ganglia etc) must be the focus of research, not some sort of vague injury of the brain as a whole. Autonomic functions like intestinal peristalsis may be even more vulnerable to damage than the auditory pathway. The autonomic centers for heart rate, breathing, peristalsis, etc. are smaller than auditory relay centers, but they may be more easily damaged by asphyxia or toxic substances. Special imaging methods may reveal these.
Posted by: Patience (Eileen Nicole) Simon | July 16, 2015 at 02:40 PM
Watched a fascinating program on Tutankhamun last night. Modern science has shown that he had a major deformity of the left foot and probably died after an injury to his right knee. It has been established that his father was Akhnaten (previously only suspected) and that his mother was Akhnaten's sister (name unknown but DNA obtained from the body of young woman in the tomb of their dad Amenhotep - she probably died from horse kick to the jaw). There was a likely history of temporal lobe epilepsy in the family and physical hermaphroditism, no doubt exacerbeted by the practice of incest. Quite likely the epilepsy caused Tutankhamun to fall injuring his knee.
We can tell all these things about people who died more than three thousand years ago but the government won't tell you what is happening to your children, shielded by a gang of mountebank bureaucrat scientists who continue to misdirect policy.
Posted by: John Stone | July 14, 2015 at 03:35 PM
Has anyone tried to ask their US Senators or Representatives to look into this? Surely there are one or two who might rattle a few cages.
Posted by: Kathryn Berg | July 14, 2015 at 01:53 PM
Katie, I found the YouTube panel. Most discouraging is Insel's idea that "we" are just beginning to do research on autism. Wrong!!! At the Boston University School of Medicine 1969 to 1975, my dissertation research was on autism. I was all alone, because autism was rare back then.
Early intervention??? My now 52-year-old son loved to be read to, and taught himself to read from his Dr Seuss and Curious George books. From reading he learned to speak just before he turned 6. By age 7 we thought he had recovered, but by age 17 it was clear he could not go to college.
Dr. Insel has not followed outcomes of early intervention long enough.
As for IACC, I wrote to "public inquiries" Dr. Susan Daniels, who replied that public comments will be posted only after HHS Secretary Burwell has chosen a new committee. I will inquire again. Not everyone can be chosen, but all public comments should be discussed. Insist on this. Insist. Insist...
Posted by: Patience (Eileen Nicole) Simon | July 14, 2015 at 06:42 AM
In case You aren't familiar with Mike Adams:
I think he's awesome.
Posted by: Sun~Rose | July 13, 2015 at 09:49 PM
What a perfect poem You picked!
What could this man do for us anyway? Isn't it parents who are successful in at their children's progress, whether small gains or large. Not that we couldn't use a Sister Kenny.
Posted by: Sun~Rose | July 13, 2015 at 09:13 PM
If the Obama administration were to replace Insel with somebody competent, they would be admitting their own outrageous incompetence and neglect in dealing with the Nation's fastest growing child disability - now 2% of our children. Look at their track record:
1. The Obama administration is no closer to discovering the cause of autism than it was before spending billions to find out. It has put its money on attempting to find genetic causes when anyone who has read the research knows it’s the accumulation of toxins in the environment that poison too many infants -- for example, mercury, vaccines, pesticides, cleaning agents, electro-magnetic radiation, etc.
2. On the education side, the Obama administration has done little to ensure that competent professionals are available in public schools to teach kids with autism. Most of these kids are not the high functioning Asperger's that the media and Hollywood likes to publicize. With the current paucity of talent to teach the vast majority with autism, most will never learn enough in school to become independent adults. They will have to depend on governmental subsidies once they age out of school. Each one will cost taxpayers $2-3 million. How could the federal government not see this coming and fund our universities to train thousands of highly qualified special education teachers needed to cope with the ever-increasing numbers of children with autism who enroll in our schools?
3. Along with federal action to dramatically increase the number of therapists, equal attention should be paid to improving their quality. There is little evidence that the Obama administration has done anything about this. Autism therapists who are fortunate enough to get sufficient behavioral training rarely learn about the biomedical ailments that are commonly associated with this disability. Their ignorance of the whole child manifests itself by not providing enough physical and artistic activity to keep children’s attention and ensure their physical and emotional well being. Rather than expect specialists to provide these services, autism therapists should be able and willing to provide these themselves and know how to integrate them into academic learning. Currently, most therapists are content with “table time” which tends to bore kids as they grow older.
4. Many parents have gone broke trying to meet the medical and dietary needs of their children with autism. The Obama administration has done little to help them. Three quarters of the parents of these kids get divorced . Government could help by increasing their health insurance coverage. But the federal government has barely lifted a finger allowing insurance companies to continually renege on promises made by the Affordable Care Act.
So give the Obama administration an "F" for dealing with the Nation's fastest growing child disability and an "A" for kicking the can down the road like previous administrations. Let's hope the next administration does better.
Posted by: Barry Stern | July 13, 2015 at 08:43 PM
I must give 100% credit to Kim Stagliano for the terrific empty suit photo.
Genius KIm...pictures can really say it all sometimes, right?
Posted by: Katie Wright | July 13, 2015 at 08:23 PM
Well said Katie.
Posted by: Lisa Graham-Garza | July 13, 2015 at 08:17 PM
Great photo Katie, need about eight of them around a table and maybe they could get something done...
What is Dr. Insel paid to head up the IACC ???
I would suppose he has few weekends or late nights used in IACC preparation. Was he paid to speak for Autism Speaks?
Has he recently disclosed the amount of money he has made from his brothers hib vaccine ???
...added in 1990, ...preserved with Thimerosal ...which likely helped START the AUTISM EPIDEMIC.
Posted by: go Rand | July 13, 2015 at 08:06 PM
The lack of accountability strikes me as particularly appalling. Mr. Insel knows that there is nobody questioning why he is being paid. What he is doing is basically defrauding the tax payer by not doing what he is asked to do. He should be fired.
Posted by: Birgit Calhoun | July 13, 2015 at 06:58 PM
Public Smublic! Oh, Katie Wright, I love you for what you write! Thank you, thank you, thank you!
Posted by: Denise Anderstrom Douglass | July 13, 2015 at 06:52 PM
Yes I will tell my child who is 2 weeks away from 16 that Early Intervention is killin it. I love you Katie
Posted by: Bre | July 13, 2015 at 06:33 PM
If anyone has additional or new information about IACC please share!
Posted by: Katie Wright | July 13, 2015 at 03:31 PM
Posted by: @Benedetta | July 13, 2015 at 02:25 PM
Bob that's an actual picture of Insels human and moral substance with the suit , absolutely nothing to see...
Posted by: Angus Files | July 13, 2015 at 02:02 PM
Eileen said she got a letter from President Obama "stating his focus on leveling-the-playing-field for all people with disabilities."
How would you do that unless you are thinking about making everyone disabled?
Posted by: Benedetta | July 13, 2015 at 09:39 AM
Katie, thanks for sharing the outrage so many of us feel. I wrote to HHS Secretary Sylvia Mathews Burwell, and other HHS staff to ask about progress in selecting a new IACC. I pointed out that I nominated myself, that I have a 52-year-old autistic son, 50+ years experience, a PhD in biochemistry, and publications on autism dating back to 1975 (Lookup N. Simon, Echolalic Speech ..., and Simon & Volicer on greater vulnerability of males to asphyxia at birth).
An automatic out-of-office reply is the only response I have gotten from HHS. Autism is clearly not a priority for HHS. I wrote to President Obama, urging him to include autism as part of his Brain Initiative. I received the same form-letter email as on other occasions, stating his focus on leveling-the-playing-field for all people with disabilities.
Meanwhile, can we find out what the Autism CARES budget is being used for?
Posted by: Patience (Eileen Nicole) Simon | July 13, 2015 at 08:12 AM
Insel and cronies are probably all too busy scrambling to get national vaccine mandates ahead of national revelations of CDC, NIH, FDA massive vaccine research and policy fraud to do much else. What did Thompson say about the CDC with respect to autism? I think "paralyzed" was the word he used. Apparently the paralysis extends to the other agencies.
Posted by: Linda1 | July 13, 2015 at 07:50 AM
Katie .. loved the "empty suit" in the photo.
As they say .. one picture is worth a thousand words.
Posted by: Bob Moffitt | July 13, 2015 at 06:46 AM
Old Nursery Rhyme -made for Insel
The other day, upon the stair,
I met a man who wasn't there.
He wasn't there again today:
Oh how I wish he'd go away!
"Inselent" would be a good adjective.
Posted by: John Stone | July 13, 2015 at 06:45 AM