It was good to see Mike Strautmanis at April’s IACC meeting. It was very nice to hear Mike say that President Obama follows IACC’s work and sees our families. I would like the White House to be able to see more IACC members in their seats so the president could better know our dedication to this cause, but that is another story.
Dr. Ananud Parekh from the HHS spoke about the $122 million his agency has spent on ASD research with the stimulus money. Dr. Parekh spoke at length about screening, early intervention and adult services. That is all very nice but these priorities leave out 80% of the ASD population. When are these guys going to understand that there are almost a million children with autism living NOW. HHS autism research cannot = here is your diagnosis, get early interventions and can call it a day.
The HHS needs to understand they have got to focus on helping children older than 3 and younger than 21! That is the bulk of the ASD population Dr. Parekh! We need environmental causation research and ASD medical research now- desperately, not the millionth screening campaign. We cannot screen and diagnose our way out of autism!
I remember hearing 2 politicians arguing about how to recover from the recession. One politician was advocating concentrating on building up lower level service jobs. The other guy said sure more jobs, any jobs, are a good thing but we cannot expect to build a world class economy flipping each others’ burgers and doing each other’s laundry. That is how I feel about the HHS’ myopic obsession with “awareness,” and “learn the signs.” The federal government can walk and chew gum at the same time! Screening and early intervention yes, but that is step 1 of 10. Let’s move! Let’s raise the bar!
This brings me to Dr. Joseph Piven’s presentation and the Grand Canyon gulf between NIH monies spent and the actual research priorities of families living with autism. One can only imagine the tens of millions of our precious research dollars spent this bloated, unneeded project.
If you ask the average autism Mom and Dad what their research priorities are I am pretty sure they would answer, more intervention research, biomedical treatments, environmental research, prevention/ causation research. Not coincidentally these are grossly underfunded areas of ASD research. Let’s take a look at the numbers of published studies on various ASD research subjects according to PubMed.
1) Autism and Brain Imaging 953
2) Autism and Genetics 3, 277
3) Autism and the Genome 844
4) Autism and Fragile X 566 – 2% of ASD have Fragile X
5) Autism and Alcohol (maternal consumption) 185
6) Autism and Maternal Drug Use 63
these research studies are too insulting on too many level to get into right now but I thought you should know about the insane amount of $ invested in this parent blaming ridiculousness
2) Autism and Biomedical Treatment 61
3) Autism and the immune system 232
4) Autism and Dietary Interventions 161
5) Autism and PCBs 16
6) Autism and Hg Emissions 3
7) Autism and Aluminum 7
Guess what? This toxic substance has replaced most of the Hg in vaccines? Go thing we know so much about its safety!
8) Autism and the Mitochondria 7
9) autism and ivig 13
Ok, I could go on and on but I think you get the picture. It doesn’t really get more black and white than this, right? I’m no mathematician but there is a HUGE imbalance here between research families want done and research actually getting funded.
The gross pubmed imbalance between needed ASD research and funded ASD research got me thinking about the Grand Canyon gulf between IACC funding recommendations and actual funded NIH ASD research. It is worse than I thought. The IACC funding recommendations have really improved over time, better reflecting the community’s research priorities and the urgent needs of our children. Does anyone at the NIH actually read the IACC Strategic Plan before choosing grants?
Question 2 of the Strategic Plan is “How Can I Understand What is Happening” to my ASD child. IACC made many fine objectives about the need for environmental and biomedical research. But a whopping 54% of NIH research in this category falls under the category of “Other, Non Specified Funding.”
I did a quick perusal of #2 NIH research that relates to my son’s form of regressive, medical and environmentally induced autism. Why did he have adverse vaccine reactions? How did this result in days of fevers? How do I understand why his immune system collapsed? How do I understand the fact he no longer recognized me when he became chronically ill? How do I understand his PANDAS? How do I understand the concurrent onset of his autism and GI disease? I have MANY questions about how this happened but none of them have to do with brain imaging, face processing, endless neuroimaging, MRI scanners or Radiofrequency equipment…But I will give you the good news first. If you have a child like mine you will be happy about this NIH IACC recommended funded research:
1)1Copper imbalance $7,000 – this is a huge problem, our kids are filled w/ copper, they are poor methylators
2)a Metabolism study $17,000
3) Medical conditions in ASD $535,000. Although I am a bit concerned about this. Sue Swedo is the principal investigator and her recent update on ASD research showed a poor understanding of ASD, the disease model. Still better than nothing.
4) Mitochondrial issues in ASD $600,000. A very nice Doug Wallace project.
I found no “other” NIH funded projects relating to my child’s issues. The NIH fulfilled the IACC recommended genetic and brain research for this category. So remember that we take a look at some of the big projects in the “Other, Non Specified Research” NIH funded research category:
1)Amaydala Dysfunction $384,000
2)Neural Dysfunction $614,00
3) ACE imaging $396,0000
4) Synapse strength $300,000
5)Neural System Facial Expertise $524,000
6)Neural System Face Processing $302,000
7)MRI neural imaging $2 MILLION
8)Atypical MRIs $503,000
9)Cognitive neuroscience $1. 13 MILLION. This is such an overfunded area. ASD is more than a brain disorder and cognitive functioning is often a result of environmental insults. How about studying that for a change?
10)Brain Functional Connectivity $388,000
11)MRIs for Aspergers $208,000
12)another ACE award $206,000
13)Neural Social Cognition $325,000. Isn’t this the same as #9?
14)MRI resonance image $500,000. The ultimate Big Man, Big Machine!
15)Neuroimaging in Childhood $403,000
16)RadioFrequency Research Scanner $500,000. More Big Man Big Machine!
Finally over $1 million more in ACE/ brain imaging awards
$8,553,020 in Non Specified on overfunded, redundant pet projects
The sheer redundancy of these research projects is truly mind-boggling. Are a bunch of MRI researchers blackmailing someone at the NIH? I mean how does one explain this MRI insanity? When is enough enough? When the entire category is MRIs? How many tens of millions need to be spent at the Simons Institute, Cold Springs Harbor and at the NIH on the same face processing, neural connectivity, synapse strength research?
Why are the issues important to my severely and medically affected, regressive ASD children all but invisible to the NIH? Who is accountable for these excessive grants that have zero to do with community recommendations?