Insel and Ring finalize all grant decisions, choose almost all their staff and all members of their scientific advisory board. They also have the opportunity to choose preferred (you better be VERY conservative) grant reviewers. Most importantly they set the research agenda. If a research subject we believe is very important, even critical to our child’s most basic needs, is ignored – tough luck, you have no opportunity for redress.

So in this context I was appalled, but not surprised, when the Dr. Insel announced the new NIH ASD “biomarker” project.  Autism Speaks and the Simons Institute were involved in the selection of this study. The Simons Institute is funded by the family of Dr. Jim Simons. Their narrowly genetic research agenda is so disappointing but they are spending their own money. This $28 million eye gazing study masquerading as an autism  “biomarkers” project is just galling in its futility and naiveté. Measuring where ASD people look does not equal a “biomarker.” It is just dumb. And if being a pointless exercise were not bad enough there have already been 800 studies on autism and eye gaze! Imagine if there were 800 studies on whether or not slamming your hand in a door would hurt and then the NIH conducts a hand slamming “biomarker” project in which they decide to fund more studies on the effect of slamming one’s hand in a door. You know circular reasoning? Well this is circular stupidity.

$28 MILLION to study eye gazing and EEGs. It is an unfathomable waste of precious resources.

Just to be clear there are already over 10,000 studies, yes 10,0000, on EEGs of ASD people. Does anyone backing this study even understand what an EEG involves for someone with autism? Unless an ASD person is VERY HF and can consent, this awful endeavor is truly an ordeal for someone with autism. First of all it involves attaching about 50 electrodes, with glue, to a person’s scalp. The vast majority of ASD people have sensory issues and are uncomfortable with strangers touching them and are distressed to be essentially restrained in the process and the duration of the experiment. After the electrotrodes are attached, the person is virtually tethered to the EEG monitor for however many hours required, at least 24. Because of my son’s seizures Christian has been through this 4 times. These EEG events are among the longest 24 hours of my life and I am sure his. Christian, like most ASD people, hated every minute of it. Despite the kindness of technicians and the medical professionals I see EEG for the sake of research and research alone as borderline cruelty. Additionally when is enough enough? There are already 10,000 ASD EEG studies and the yield of useful information is so low compared to the  sacrifices ASD make in the process.

Here again Insel, Ring and a handful of other powerful men, none of whom have a child on the spectrum, unilaterally decide how to spend 1 in 8 of all NIH ASD research dollars. No public discussion, no debate, nada, rien, zero, zilch…it is a dictatorship of the bureaucratic.

Is it just me, or have you too grown to hate that ubiquitous term “personal medicine?” To me it really means ultra academic genetic research that may OR may not pay off in 25 yrs. Dr. Insel is true believer in Obama’s Brain Project and “personalized medicine.” It seems more like “personalized  pork” projects for geneticists and neurologists and offers precious little to the consumer. I am so tired of being sold this project. Why wait when we can subtype heterogeneity and personalize medicine now? Study the regressive ASD subtype, study the GI/ Immune subtype, and study the classic ASD subtype and the HF subtype. Again if one spends anytime at all around people with autism subtypes are so obvious. Insel speaks as if the heterogeneity is some mystery of the ages and we have no idea at all what major groups of ASD people exist.

The deeper problem is that academics like Ring and Insel are still studying autism as if it were 1990. They believe that the primary problem with ASD is social impairment and repetitive behavior and are looking for ways to drug these problems away. We know it doesn’t work like that in 2015. These symptoms are merely manifestations of deeper biological problems. A real ASD biomarker project would employ a multi- scale multivariate approach. A real biomarker project would study each participant’s: metabolics, immune profile, microbiome, sleep, diet, vaccine history, developmental trajectory from birth to 2 and possibly genetics. Such a study would yield REAL information about the causes of problem behavior. Afterwards, yes, truly “personalized” interventions would be possible.

Autism research needs 21st century leadership, not the also-rans of eye gazing devotees.

Scientific leaders must listen to and stay actively engaged with the needs and priorities of actual ASD families. We cannot afford to watch Ring and Insel fund $28 million eye gazing part 2. It is time for meaningful, independent, consumer oversight of our tax dollars by the biggest ASD organizations (not just AS and Simons), such as TACA, the National Autism Association, and Generation Rescue. I promise if TACA, NAA and Generation are involved no more nonsense and waste and instead we will progressive, life improving science.

Katie Wright is a Contributing Editor to Age of Autism.