By Katie Wright
Dr. Tom Insel of the NIMH and Dr. Rob Ring of Autism Speaks have dream jobs. These men very much wanted the powerful positions they hold. Insel is essentially in charge of all NIH autism research. Insel would disagree and say the NIH president and others at the NIH hold more sway. This is difficult to believe when Dr. Collins came to 1 IACC meeting in the past 4 years and left right after he spoke. As the CEO of AS Science Dr. Ring as controls the direction of tens of millions of dollars of ASD family raised research money. Insel and Ring have virtually unlimited scientific power within their organizations and are unaccountable and largely unavailable to ASD public at large.
There are those who believe that any public discussion or evaluation of ASD research leaders is equivalent to a “personal attack.”
Oh, the drama!
A “personal attack” is an attack on one’s gender, sexual orientation, religion, etc….Parent and consumer advocates believe that the powerful and well compensated adults who control our ASD research dollars are very much public figures, by choice, in the autism world. When one accepts a public position of tremendous power and spends taxpayer money or money donated by 10,000s of ASD families, accountability and public feedback are part of the deal. Put on those big boy pants. NIH money and AS science dollars are directly the result of the powerful advocacy efforts of autism families. It is vitally important for bureaucrats and academics to remember that no one is a victim here, only those disabled by autism.
Here is the problem: you and I have exactly zero opportunity to be heard by AS science or by the NIH. There is almost no opportunity for public input at the NIH or within AS science. IACC does offer a public comment period during meetings (which are usually held about 4 times a year). However, IACC has not had a meeting since July 2014 - so much for that. AS science offers no “town halls,” no website surveys, no Q & A opportunities. Insel, and especially Ring, rarely, if at all, blog or tweet…making their isolation from autism families, especially those who are not hand picked to serve them, nearly complete.
I would have a better chance, a vastly better chance, of calling up my senator’s office and asking for a meeting or interview than ever getting a returned e-mail or phone call returned from Dr. Rob Ring.
I am one of about 14,000,000 constituents to Senator Schumer but he, and all elected officials, knows that public input matters and an effective leader must try hard to stay engaged with the people they serve. When one is an unelected president of any advocacy organization, it is easy for ego and hubris to run unchecked. There is by definition no reality check. Neither Ring nor Insel care for, treat, live with or spend much time with ASD people (especially those not HF). It is all too easy for unelected bureaucrats to disappear from the communities they serve, except to re surface at board meetings and academic conferences.
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.