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Katie Wright on the GAO Report on Autism Research Versus IACC

Thank youBy Katie Wright

I want to thank the perceptive and hard-working Congressional staffers who wrote the Government Accountability Office’s report on autism research. The GAO report is similar to the work of the IACC support staff: the record keeping is excellent the portfolio analysis, the publications analysis exceptionally well done. If only the actual NIH autism grants were half this good….

The GAO report is comprehensive, well researched and, perhaps, most importantly of all, truly representative of the interests and concerns of American families affected by autism. It is also worth noting that the correct, most judiciously spent, portfolio of autism research is in the best interest of every taxpayer.

Democracy is a beautiful thing.  Unlike the Soviet style leadership appointments for life at the NIH and the CDC, elected representatives are accountable to consumers. They take our calls and respond to our concerns. If they do not perform well, representatives lose their jobs! That is certainly NOT how things work with the NIH leadership.

OK, so this very fair and very sensible GAO report basically states that there is excessive duplication in federally funded research AND a corresponding UNDER-investment of NIH dollars in other important areas of autism research. For example, there are over 11,000 studies on autism and early intervention.  A dozen years ago we indeed needed studies on early intervention, but right now there are 11,000 such studies, let’s take a pause, OK? However, there is a tiny, teeny, tiny amount of research about treatment for ASD children above the age of 5 and almost no environmental research.

Listen, I am just an ordinary housewife, not a brilliant economist but when I buy groceries for the week I buy fruits, vegetables, protein and some starch. I have to cover all the bases right? You guys reading this know what I mean. I imagine if Dr. Insel were grocery shopping he would buy 100 apples, some hamburger meat and call it a day. It isn’t as apples and meat are awful but it is crazy to keep buying so much of the same thing while neglecting everything else you need.

In the same vein, IACC seems to be content with continuing to overfund the area of early intervention and genetics.  Yet, the public has been asking the NIH to research treatment for children still profoundly autistic despite early intervention. We desperately need research into biomedical treatment for all the ASD children with physiological problems. Nevertheless, Dr. Collins and Dr. Insel refused to appoint even ONE immunologist, GI or one environmental scientist to the IACC committee.   And believe me scores of advocates nominated many excellent candidates in all three of these disciplines.

But no… Collins and Insel stacked the deck with too many psychologists, advocates with little or no constituency and brilliant men with the highest of high functioning apergers. Of course IACC is not producing research plans that resonate with the public!

With a few exceptions  (notably Lyn Redwood and Dr. Geri Dawson) there are no actual representatives of substantive autism orgs in the public “public seats” at IACC. As a result the IACC research plan is almost entirely genetic and psychiatric in nature.

Dr. Insel has been reluctant to accept autism of the 21st century in which ASD is often an immune mediated environmentally triggered total body disease. The GAO report seems to be saying to the IACC committee, “hey, why aren’t you paying attention to all these other important issues? American families really want help for their sick ASD family members. Why are you ignoring them?” Indeed, why is guest lecture after guest lecture about genetics, eye gazing, learning the signs yet there is almost no focus on environmental science or postnatal triggers?

Thousands of ASD family members call their members of Congress frustrated with the excess genetic and brain imaging research.  Hundreds of thousands of parents saw their child develop normally into toddlerhood than lose all their skills and speech.  Incredibly, IACC practically refuses to even discuss this subject.

 

**********

There are just over 100 studies on possible GI treatment interventions. Additionally many people with ASD have autoimmune problems and are debilitated by every infection, cold or virus that comes their way. Many children with ASD have PANDAS, if left untreated (as it usually is) intractable and incurable severe OCD takes hold. We must research available treatment interventions now. There are 4 studies on autism and PANDAS.

There are 1,360 studies on genomic sequencing and autism.

We need humane and effective research into causes and treatment of encephalitis and autistic regression. There are about 40 studies on autoimmune dysfunction treatment and autism.  There are 40 studies on autism and encephalitis. The lack of investment in this area has had tragic consequences. Right now many young of these young ASD adults are being subjected to ECT. Yes ECT! Most of these young men and women are nonverbal and unable to consent. Rarely are these young people properly screened for the severe GI or immune dysfunction that underlies their maladaptive behaviors. Instead their behaviors are labeled psychiatric and treated via shock treatment.

IACC and the NIH do not understand the priorities or needs of millions affected with autism. Why is the NIH spending hundreds of millions on identical brain imaging projects  (check out ACE projects if you really want to see major league waste in action) but all but ignore the pressing and life ruinous problems our children live with every day? We do not expect IACC to solve autism but we have a right to expect that they understand what autism is, and not just for 2 year olds or those not on the highest end of the spectrum. For heaven’s sake 50% of ASD people have GI problems yet this issue receives less attention and investment by Dr. Insel than the creation of very expensive and grossly impractical robots to teach ASD toddlers social skills.

But rather than listening carefully to what their superiors, in a sense, have to say, most IACC members became apoplectic at the smallest hint of crictism. This is speaks to a serious sense of entitlement to public money and shock at being held accountable for their recommendations.

In the real world if your boss gives you a poor performance review do you listen carefully and agree to make changes or do you become hysterically defensive and immediately resolve to write and angry retort? You had better make changes if you expect to keep your job, right?

Listen, not every performance review is going to be a winner. Time to grow up. When your failure is on such a large scale and affect millions, one would think you would sit up straight, take a negative review very seriously and want to be better, right? Oh no! Not at IACC buddy! No criticism allowed! Whatever the public says to their congressional reps is wrong!

The GAO noted that the vast majority of the ASD public, and many members of IACC themselves (!!) are very disappointed with IACC’ performance and the pedestrian and repetitive nature of NIH grants. Positively endless learn the signs, diagnostic, eye gazing, genetic, genomic and brain imaging is funded. Yet, IACC the NIH funds so little substantive environmental research. In 2011 only 5% of the ASD research budget went to environmental research. But were Dr. Insel or other IACC members capable of taking a step outside their egos and thinking, “what have we been missing? Why is the public unhappy with our strategic plans?” The answer would be a resounding H to the no!

Almost everyone portrayed himself or herself as a victim of this cruel and grossly unfair report! Only Lyn Redwood said, “Wait a minute, maybe we should not have such a knew jerk reaction. Maybe we should really think about some of these recommendations. “ Oh, no, nobody else wanted to doing any thinking, apart from- how dare they be criticized! Unless it is to be lauded, their work should never be evaluated in any way! How dare Congress!

I have little patience for leaders who cling to power for decades and then refuse to take any responsibility for their failures. Never once in the course of the GAO report discussion did Dr. Insel say, “obviously I have failed on some levels and we need to carefully listen to this feedback and try to do some things differently.” Oh no! It was all Victimology 101. The criticism is so unfair. “They” (our congressional representatives) “don’t get it!”

It was especially hard to hear the whining complaints of Dr. Jose Cordero. Cordero who has attended maybe 50% of IACC meetings and added absolutely no value, bemoaned the grievous wrong inflicted by the GAO report!  A lecture on autism in Puerto Rico 2 years ago is the sum total of Dr. Cordero contributions to the IACC. So listen, buddy, no one wants or needs to hear your complaints. Can it. Really.

Half of all public seats are held by those with super HF aspergers and they were incensed by the criticism that their report does not reflect the concerns of the community. Well that is the whole problem in a nutshell right? These men represent the highest functioning 2% of the spectrum. Additionally, many of these men lobbied against the Combating Autism bill in the first place!

Noah Britton is an aspergers representative. Mr. Britton rarely attends IACC meetings or contributes to discussions. He introduces himself as, “a handsome man,” at the proceedings. Dr. Insel insisted on appointing Britton to IACC rather than the president of the National Autism Association, Wendy Fournier. NAA represents over 10,000 families, a majority of which has significantly affected ASD children.  I know Wendy would not attend IACC only when she felt like it and Wendy would not use the IACC forum to make bad jokes.

Insel has only himself to blame for the sorry composition of the committee. I cannot take the hand wringing that he “has no control” over public seats. Please, Sebelius and Collins appoint whomever he recommends. Most of his public advocates do not show up and if they show up they do not speak or add value.

The theme of the GAO report was excessive duplication and wow as that on display during the discussion! The federal and public members went on and on and on, using the same language, decrying the same injustices over and over for nearly an hour! After we heard from Dr. No Show Jose Cardero, Alison Singer exclaimed that “The people at the GAO do not understand the science! There must be replication!” No, Ms. Singer I think it is you who do not understand the state of autism science. We are not talking about replicating an early intervention study 100 times or 200 times, but 11,000 times. Dr. David Mandell was also irate that the GAO released this “ disingenuous” report! How dare they! Did Mandell even read the report? Does he understand what the authors meant when they said that genetics and early identification have basically starved environmental science and medical treatment for funds?

So thank you again to the authors of the GAO Autism Research Report. The members of IACC would do well to stop feeling sorry for themselves and listen to an outside objective viewpoint for a change.

Katie Wright is Contributing Editor to Age of Autism.

Comments

Benedetta

Jeannette Bishop

When you said that -- I remembered - Generation Rescue -- it was J.B. Handley

My favorited comment.

Jeannette Bishop

Benedetta,

That was, I think, a Generation Rescue ad. I can't find a link to it now.

Benedetta

"If you had caused a 6000 percent increase in autism; wouldn't you cover it up too?"

Who said this? I forgot Dan Burns, Brian Hooker, Dan Olmstead - some one remind me and thanks in advance.

But it says it all when it comes to IACC.
Tom Insel is doing his job. You can't fault the man -- if not him some one else.

That is where we be and it will take I am afraid very angry people in the streets.

Twyla

1.3 billion dollars mostly wasted - that is outrageous!

Heather White

Thank you Katie! I am an autism mom and understand the frustration of seeing research gaps and noticing a total lack of interest in filling them. I am working toward my Doctorate in Health Science and then PhD and I plan on focusing my path in research toward biomed therapies, demographics and environmental cause. My son is nearly recovered due to a combination of conventional medicine and natural science. We need to tap into that and properly case-work these patients!

Tim Kasemodel

Katie,

You rock. Thanks so much for standing up for my son and my wife and I.

Anne McElroy Dachel

Thank you, Katie, for again pointing out that IACC has done nothing significant in the face of a health care disaster we all know as autism.

Boyd Haley, PhD, from the U of KT who sounded an alarm about mercury exposure in vaccines a number of years ago, once said, "If you don’t want to find something, look where it's not."

That pretty much says it all when it comes to the money wasted on dead-end research designed to give us no answers about autism and continue the myth that it's the result of bad genes.

Anne Dachel, Media

Carolyn

Katie,

Thank you so much for addressing this issue at a very critical time for us within the autism community. The GAO report has given us a chance, as a community, to show that we are not being adequately represented by the IACC nor our government on the whole. I would ask that you all read the report or at least the summary. After doing so hopefully you will want to take action. I'd urge you to then watch the recording of the last IACC meeting on November 8th where the IACC's strategic plan was discussed in a full day session where many appointed members were absent, and view exactly what Katie is describing, which is a lack of knowledge base of the majority of currently serving members on autism research. You will see some mention the need for research in areas that have already been done and quite exhaustively so. The members should have been aware of this due to the document they were provided as members that breaks down each area of research and what has been done in those areas since 2008. It was obvious that many members did not research that document nor were they prepared for this very, very important meeting. The January 14th meeting that Katie references also should be viewed to see how the IACC did not properly address the GAO report and also how they kept out language regarding vaccine exposure as an environmental toxin from within their strategic plan.

You can access the meeting videos here:

http://iacc.hhs.gov/events/index.shtml

Please also not there are no meeting minutes that have been prepared for public review of the majority of meetings. As a community we cannot confirm attendance at meetings without those minutes nor keep track of what the IACC is including within them. This too is something the IACC should be held accountable for.

You can find the GAO report link via the article link below as well as some further breakdown of what the GAO report provides in relation to the 1.3 billion dollars spent on autism research where the GAO believes that 84% was spent on replication of studies. As Katie has indicated, and many of us have broached, these studies have not transferred to application and have not assisted those presently living with autism nor their families. I wrote this piece for TACA in the hope of igniting a fire in the autism community due to what has been transpiring since the original CAA and the IACC not providing what has been the purpose of that committee. Also in this article are links to the IACC's compiled objects report that provides a comparison of research studies by topic.

"If the IACC’s Strategic Plans were IEPs, would they be in non-compliance?"

http://tacanowblog.com/2013/12/31/if-the-iaccs-strategic-plans-were-ieps-would-they-be-in-non-compliance/

As an individual who was involved in the original collaboration on the first CAA, to say I am disappointed with the lack of representation of the autism community in the last reauthorization would be an understatement. As we head toward a new reauthorization this year I would urge parents and advocates to become involved, support those organizations that are assisting your family daily such as NAA and TACA, and tell your legislative representatives that families are tired of seeing the ship sink. We need a nice big life preserver to be thrown out by the groups who can do so and be effective in supporting individuals with autism and their families, not those that do so to enhance their position within the business of autism.

As a parent of a now adult son living with autism I'm more concerned now for his welfare than I was ten years ago. We are traveling a slippery slope of those that are able and those that are not able to afford what is needed for their child and there is discriminatory policy being passed in many states. That should never have been allowed to occur and if the current trends and direction continues, the foundational grassroots efforts many put forth to effect change will be lost.

Please write your concerns to the GAO and send your written comments regarding the report to the IACC for their next meeting on April 8th. Please ensure you indicate you want your comment to be entered into the public record for that meeting. If you can also attend the meeting and register to provide oral comments to the committee. We need more parents who can to do so, especially since this committee is suppose to be representing us.

Thank you again on behalf of our family and much appreciation to Age of Autism for continuing to address these issues.

Carolyn

Eileen Nicole Simon

Two kinds of autism are in the news: (1) a non-disabling “difference”, and (2) a neurological disorder that prevents normal language development. Evidence that could explain developmental language disorder was published more than 50 years ago. See the article by Windle on asphyxia at birth in the October 1969 issue of the Scientific American, which described injury of auditory nuclei in the midbrain, of monkeys.

I have tried to point this out since the Autism Summit in November 2003. I am grateful to Lyn Redwood for pointing out my repeated public comments on this issue. Dr. Koroshetz commented that the auditory system damage from asphyxia was seen in monkeys, but not human children. I am grateful for this brief feedback from Dr. Koroshetz. I wrote to him and provided a list of medical articles in which auditory system damage was reported in human children.

Also, look in PubMed for Kulesza and Lukose. These scientists found auditory system damage in individuals with autism, and the same damage in laboratory rats exposed during gestation to valproic acid, which is recognized as a prenatal cause of autism.

I plan to attend the IACC meeting in April with the 3-minute presentation I have given many times in the past. More important than what I say would be immediate discussion, to bring up details like the auditory system damage found in human children, which I left out because of the 3-minute presentation limit.

The GAO report is online at http://www.gao.gov/products/gao-14-16.

Gayle

Katie-Great job reporting about the ineffectiveness of the IACC! I have a 27 year old son with an autism diagnosis and I beleive he was part of the first wave of the autism epidemic with no end in sight. The IACC directors should be held accountable and shown the exit door.

Seth Bittker

Katie,

I agree. Research dollars that currently go to behavioral interventions could be better spent on biochemistry and in biochemistry the dollars should look at what happens early in development.

To be specifc we know a number of biochemical markers are known to be different in most cases of autism than from controls. However, the research on these markers are done after autism has been diagnosed. What should really be analyzed is evolution in these markers as autism is developing.

I think a very useful study would take blood from infants and children in high risk groups (perhaps because of having an autistic sibling) periodically (6 months of age, 12 months of age, 24 months of age, 36 months of age) and measure a number of markers. Then one could compare the evolution of blood chemistry in those who develop autism to those who do not.

Jonathan Mitchell

Katie Wright: Maybe you could talk to your parents and ask them why they give half a million dollars worth of funding to a rogue scientist who believes autism is harmless and that it is not a disease but a difference and claims that superior skills in autism can be harnessed to help them get jobs. Also, why would they put a tenth grade dropout on the scientific advisory board of autism speaks.

You do raise a few good points about the IACC, particularly about the numerous persons very mildly on the spectrum who oppose curing autism. Maybe you could comment on why not a single pro-cure autistic such as myself has ever been appointed as an IACC public member. Roger Kulp has expressed an interest in being a committee member. I think he would work hard to try to find things helpful to autistic people and certainly wouldn't take the flippant attitude that Noah Britton has. Actually, perhaps we could consider abolishing the IACC altogether in part for the reasons you gave and abolishing or at least amending the CAA.

Twyla

Thank you so much for writing about this. Very encouraging that the GAO would write this report. Perhaps there was good reason for the congressional committee to wait for this report before holding their next hearing. I hope that hearing will take place.

Cassandra

Where can the GAO report be found?

Sandy MacInnis

Thank you so much Katie.

Our congressional representatives need to hear more about this, and in a way that they will listen.

My own congresswoman, whom I respect on almost all other topics, and her staff, seem to have a hard time understanding that the IACC is not doing such a great job. The more substantive material we have to point them to, the better. The GAO report (although I haven't yet read it) and your post here make a good start. If you come across more material that we can point our representatives to, please post links to it, and I hope concerned readers will contact their reps with the links.

Betty Bona

I see the same complaints in the ME/CFS world -- study after study on exercise therapy and on cognitive behavior therapy. There is a new potential injectable drug being researched for chronic pain (common in fibromyalgia and ME/CFS) that is essentially like an injection of IL10 (I think). They call the approach "gene therapy". I don't understand why it's gene therapy, and maybe we could get more "immune system in autism" or "GI in autism" research funded if we called it "gene therapy" too. If the money is in genetics, maybe we could just reinvent the characterization of the research we want funded. But we couldn't use names already associated with actual physiological autism research . . .

Autismmom

a lot of the research focus (and money) is on the genetics of autism too. I've noticed an increase in news about use of third-party DNA in embryos and other reproductive technology. These scientists are laying the groundwork for genetic cleansing I'm telling you. A child's fate will be determined via a blood test. A GATTACA future.


Watch/read:

"Britian could create first "three parent" baby through IVF" -The Telegraph

http://www.telegraph.co.uk/science/science-news/10146226/Britain-could-create-first-three-parent-baby-through-IVF.html

cmo

With recent "Autism gene" / billion dollar breakthroughs, gene researchers have it down to a combination of "variants and markers" on 300-500 genes.

Tests and gene treatments for children are just another decade down the road with continued funding...

until then, just continue to look for the early signs.

Bob Moffitt

Katie .. I appreciate all you do .. which in my humble opinion .. has already provided far more effective "oversight" .. by keeping the public informed .. regarding the failed policies and flawed leadership of the IACC .. than the elected representatives who serve on the House Committee on Oversight and Government Reform .. or .. more imporantly .. than the continuing .. voluntary .. service of Lyn Redwood and Dr. Geri Dawson .. who occupy the "public seats" at IACC.

I have the greatest admiration and respect for BOTH Ms. Redwood and Dr. Dawson .. and .. my family and our autism community .. will always be in debt to their courageous efforts.

Having said that .. I always admired Lyndon Johnson .. a masterful politician .. who made certain to "appoint" the most vocal .. hostile opponents .. to committees he formed .. because Lyndon preferred to have those vocal opponents "inside the tent p.....g out, rather than outside the tent p.....g in".

Just saying.....

Jill Fenech

Katie - I love you. You articulate so well the frustration that I feel. Light it up blue! I wonder what is really going to make the world really "get it" that autism has no end in sight. I have learned to block out the flu shot, meningitis shots, shingles shot signs whenever I go into a drugstore. Man's inhumanity to man. My daughter is almost 21 and is the tip of the iceberg. God help us all because Ton Insel is following a different higher power. Thank you

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