By 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.