By Katie Wright, SafeMinds board member
When I was a student at Boston University, I loved our college newspaper, The Daily Free Press. Independently financed, the Free Press got the inside scoop on every B.U. issue from academia, staff salaries, and cheating (by students AND faculty). The administration hated The Free Press because of its investigative reporting and because The Free Press really let B.U.’s “freak flag” fly, so to speak.
The success and credibility of the Free Press drove our college president, the late Dr. John Silber, so berserk that he created and funded a university-sanctioned newspaper, The B.U. Press, which was affectionately known by students as “Pravda.” (Old reference I know, but it was 1989.)
Pravda presented an upside-down universe. According to the articles in it, Boston University students clamored for dorms to ban opposite sex guests, begged for crackdowns on underage drinking, and wanted to ban campus rock concerts. It was all propaganda. We loved to read Pravda just for fun. It was like watching someone’s mom trying to use “cool” slang—totally entertaining in the wrong way.
So in reading all of the glowing reviews of Dr. Tom Insel’s tenure at the National Institute of Mental Health (NIMH), I had a flashback to Pravda. A neuroscientist and psychiatrist, Insel led the National Institute of Mental Health from 2002 to 2015. Last week, the public learned that he was leaving the NIMH.
In leaving the NIMH for Google, Dr. Insel says he has “the opportunity to have a major impact on the world and the millions affected (with mental illness).” Well, o.k., hasn’t Tom Insel been in charge of the world’s largest mental health research budget for 13 years? Did Insel not have the opportunity in his tenure at the NIMH to “make a major impact” on mental health? I mean obviously he didn’t, but this job at Google is certainly not his first opportunity.
Even better are the words of his boss, Dr. Francis Collins. Collins stated, “Under Tom’s leadership, the NIMH nurtured a culture of science that puts the needs of patients first.” Can anyone please find me a single person affected with or by autism who would agree with that? Like many of you I am sure, I am reading these rhapsodic accolades and thinking, “This cannot possibly be the same Tom Insel who I know?”
The truth is that Dr. Insel has done nothing for most families affected by autism. His prioritization of funding genetic research, endless studies on learning the signs of autism, more genetic research, and genomics, has not benefited a single child. The needs of patients have never figured anywhere on Dr. Insel’s agenda!
In 13 yrs, Dr. Insel basically controlled the autism spectrum disorder (ASD) research agenda. He accomplished nothing for ASD families. The “learn the signs” research was already well underway when he took office.
Under Insel’s leadership, NIMH has:
- Failed to prevent one case of autism
- Failed to develop one new research-based intervention for autism
- Failed to identify a medical treatment for the scores of ASD people suffering from horrible gastrointestinal problems, immune-related illnesses, and intractable seizures.
To be fair, one can make no progress on these subjects unless one studies them!
Ah, there’s the rub!
Dr. Collins praised Insel for “being at the very center of IACC [the interagency autism coordinating committee].” Oh, you mean the autism research body that Insel has suspended for over a year while he was apparently weighing new job opportunities? Here I would agree with Collins—Insel was at the center of the unmitigated disaster the IACC has become.
It’s quiz time:
- Who is responsible for not holding an IACC meeting in 14 months? Tom Insel.
- Who is responsible for the absurd “public” appointments to the IACC committee, who were either former CDC employees who didn’t show up for IACC meetings, or countless men with high-functioning autism, or doctors who know everything about pediatrics but little about autism? Tom Insel.
- Who has championed the least successful ASD research projects on the IACC agenda? Tom Insel.
- Over 25 people with autism died between May and August 2015 as a result of wandering/elopement by people with autism. As the autism community clamors for urgent action on this deadly issue, who is moving at a snail’s pace? Tom Insel.
In the past 10 yrs Tom Insel has refused to appoint an environmental scientist to IACC. ASD families have repeatedly nominated researchers and professors from Harvard, UCLA, Wake Forest…..but no.
Insel claims that the public is excited about the genetic “breakthroughs.” I’m sure the public would have been more excited to find out why up to 40 percent of the autism population has an intractable seizure disorder, in comparison to 1-2 percent of the general population. Insel argues that early intervention is the key to remediating autism yet only 17 percent of all ASD kids who receive excellent early intervention make significant progress. Insel was a giant proponent of the belief that $100s of millions of research dollars on brain imaging would yield ASD phenotypes. Not only has that not been the case, but now we see all the large brain imaging studies are hopelessly flawed. Insel’s parallel universe is ridiculous and tragic.
Did you know Tom Insel went to Boston University? Insel would have been a regular contributor to the B.U. Press if he had the chance, as Insel really, really loves good fiction. Surely B.U. President John Silber would have read every word.
HOW SAFEMINDS IS HELPING
Bringing matters like these to your attention is one example of how SafeMinds is helping create a safer world for our children. You can help us continue our work by donating to our Policy and Justice Fund, our Making a Difference Research Fund, or our Parent and Family Education Fund, or by contacting us to volunteer.