By Katie Wright
For almost 10 yrs now the NIH has spent close to $200 million a year on autism research. Yet I have wondered why progress towards autism causation has been so insignificant. So I broke down all NIH autism research spending to see where exactly that money is going…
2015 NIH Autism Grants
$38 million - Genetics
$19 million - Brain/ Brain Imagining
$16 million - Behavioral
$4 million - Medical/ Pharma
$9 million - Epi./ Other (overhead)
$8 million - Environmental
Total: $94 million in ASD grants
NIH claims to have spent: $208 million
$114 million for overhead or grantee universities? Why so much?
Problems w NIH ASD Environmental Science Research
The vast majority of ASD families have made it clear to IACC, the NIH and their members of Congress, etc. that they expect to see much more environmental spending. Currently the NIH spends less than 10% of ASD research funds on enviro science – even after giving benefit of doubt to a number of questionably environmental studies (“enviro” studies designed by and conducted by geneticists). Additionally the environmental spending grants chosen by the NIH are largely redundant in nature and of a low priority.
Oddly, among the largest NIH/ ASD enviro grants are studies dedicated to studying ASD/ environmental factors in foreign countries. This would not be a concern if the enviro science budget were not so small, yet it is. Awarding 20% of all NIH enviro grant dollars into research on enviro triggers in foreign countries makes no sense and is not what Congress wants to see.
Prenatal Risk Factors in Finland - $540,000
Air Pollution in Denmark - $200,000
Gene/ Enviro Factors In Korea - $1.5 million
Jamaican Risk Factors - $400,000
Just because these nations allow access to easy to use medical databases does not mean this information is transferable to American autism. Finland and Denmark are terrible comparison nations to the United States. Finland and Denmark are highly homogeneous countries with the strongest environmental protection laws. Autism Speaks and the NIH have already been a $5 million epi. study on autism in Korea and it has done nothing to elucidate causes of autism in the United States. However, a major problem with these foreign epi studies if that other countries classify autism far more loosely than here (autism is basically an on demand dx for HF people w social problems) and adhere to a different vaccination schedule.
The vast majority of American ASD families would prefer that money to be spent on environmental factors affecting their children: such as toxicology: flame retardants, mercury, toxins in homes (flooring, cleaning supplies), artificial ingredients in baby and toddler food, toxins in drinking water (Detroit), endocrine disrupters, and of course, how vaccine ingredients interact and affect a baby’s CNS.
In the past the NIH has funded those with a clear conflict of interest to perform vaccine safety research. Stakeholders have been excluded from the process yet their ideas for research design are critical. Most researchers do not have infants and are unaware of the aggressive nature of the infant/ toddler vaccine schedule. They study vaccines in isolation of the combination they are given, they do not study how dozens of adjuvants interact. There is almost no research on how Aluminum, Polysorbate 80, Formaldehyde, Ammonium and many other scary substances like Vero- monkey kidney cells, impact a baby’s central nervous system. The researchers, rarely if ever, speak with parents of a child who suffered a vaccine injury and instead work closely with those who develop vaccines.
Other NIH funded environmental research, sadly, examines already financially saturated areas of environmental research: parental age and obese mothers as primary ASD environmental causation factors. There are 100s of such studies; NO ASD parents and NO taxpayers believe we need more. Additionally, probably the most well-known and respected autism epidemiologist Dr. Hertz-Pinchero, discovered (2012) that no more to 2- 3% of the ASD increase can be attributed to older parents. Strangely, the NIH prefers to cite the epidemiology work of Dr. Peter Bearman, a man with no environmental science or autism science expertise. Bearman is a sociologist whose major published work is about doormen (I am not making this up). Bearman argues that older parents cause a 10% + increase in autism. Obviously his work is more politically palatable to the NIH but is of an undeniably inferior quality to that of Hertz-Pinchero.
Finally the NIH sponsors almost NO postnatal environmental science. Given the fact 40% of ASD children develop typically for 18 months and then lose skills and speech, this is such a rich and unexplored time frame for enviro research!
Problems with NIH ASD Intervention Research
NIH funds 5x as much behavioral intervention than biomedical intervention research. Stakeholders have, once again, made it abundantly clear to IACC and NIH leadership that ASD children and adults are struggling and suffering with serious GI and autoimmune problems. Out of 250 + studies, just 1 addresses GI problem and none autoimmune illness. The vast majority of medical research focused on anxiety alone. The other area of treatment research investment focuses promoting risperdal (a very dangerous anti-psychotic) and the financially saturated subject of oxytocin (a mild treatment for anxiety)– there are already 50 such studies on oxytocin.
Families wanted NIH research to address root causes of autistic regression, treatment for food allergies, PANDAS, encephalitis, immune disorders, and epilepsy. 25% of ASD people have intractable epilepsy. This is a life and death issue. Many of our families are having incredible success with Charlotte’s Web. It is nontoxic hemp oil that has had remarkable success treating intractable epilepsy. Why has this life saving medicine been ignored by the NIH?
Rather than 50 + funded studies into “possible” genetic pathway for future drug development treatment via FX mice, the NIH could be funding clinical studies on biomedical interventions that exist now and are helping sick ASD people today. Research into PANDAS and IVIG treatment, anti-inflammatories for GI disease, TSO for intractable diarrhea, are just some of the novel and safe interventions that the NIH refuses to study.
Instead, as stated above, the NIH spends almost the entire biomedical treatment budget on the possible interventions for those with rare genetic diseases (less than 10% of ASD people have documented genetic diseases). Over the course of 15 yrs and tens of millions of dollars later, NONE of this NIH funded work (from Mark Bear, Jackie Crawley, Mustafa Sahin) has resulted in any actionable success. Families and taxpayers would prefer to see an emphasis on researching treatments we know work now and are working for those with typical (non syndromic) autism.
Problems with ASD Behavioral Research
By and large the majority of NIH funded behavioral research is, again, excessively redundant. Huge million dollar + grants are repeatedly given towards research identifying early signs of autism. There are already over 2,700 published studies on the early signs of autism- plenty. We need doctors to read this work. We do not need more learn the signs research. Additionally some of the largest treatment grants are for non- novel research into preschool age early intervention. There already are over 1,000 published studies on autism and early intervention and hundreds more in the pipeline. By over-investing in this topic the NIH has starved urgently intervention research for teens and adults for research dollars.
The NIH conducts very little vocational research or research in independent living. Incredibly, there is just one grant on ASD safety issues, one of the highest ASD family priority issues. This one NIH ASD safety/ anti wandering research grant was awarded only $76,000! Conversely the NIH is funding a $500,000 study on autism and eye blink conditioning, an area of study that is no one’s priority.
Problems with NIH Genetic & Brain ASD Research
I have examined the last 5 years of NIH ASD research and was stuck by the fact the NIH is investing in the same genetic and brain research, done by the same people, year after year. The lack of diversity is striking. Given the fact gene and brain research eat up approx 65% of the entire research budget, this is alarming. It is closed club consisting of few novel ideas. There has been little to no return for autism families or the taxpayer from this research. While NIH bureaucrats and geneticists continually talk of “genetic research breakthroughs,” this work has delivered nothing to the consumer. What may be, indeed, be interesting or exciting to bureaucrats, academics or genetics has not amounted to progress. There is little to no support for the research outside academia and it behooves Congress to insist on a more practical, delivery focused, consumer friendly distribution of autism research dollars.
Katie Wright is Contributing Editor to Age of Autism.