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An Open letter to Tom Insel, Director of the Interagency Autism Coordinating Committee (IACC)

Thomas inselThank you to our good friend Laura Bono and our sponsor Safeminds for this letter. Please share with family, friends throughout social media. Thank you.

Dear Tom,

It's been a while. I used to come and plead at the microphone for help for autistic children and families. Up until a couple of years ago, I submitted public comments under my name or with organizations for nearly every IACC meeting - going all the way to back when you took over the National Institute of Mental Health in 2002. Gosh, I've met with you in person more than a half a dozen times to talk about the science, what conditions we were seeing in kids on the spectrum, and the research that was needed to find the answers to help. But not anymore. I realize now that I was wasting my time. You haven't listened to anything I - or the thousands of other heartbroken parents - have been telling you.

Tom, as I know you know, twenty-five years ago, autism was a little-known, uncommon disorder. Today, autism is more common in America than childhood cancer, juvenile diabetes, and pediatric HIV/AIDS combined.

The increasing numbers of children being diagnosed with autism has created a national health emergency.

In a speech at the National Institutes of Health on September 30, 2009, President Obama specifically cited autism, along with cancer and heart disease, as one of three health conditions targeted for major scientific research investment through the American Recovery and Reinvestment Act. Obama expressed his hope that research into genetic and environmental factors would result in strides in early intervention, treatments, and therapies to help people affected by autism achieve their fullest potential.

That has not happened.

Instead of seeing any kind of improvement, or any kind of progress, the numbers of autistic children have continued to rise.

Now 1 in every 68 children in America has autism. My prediction for what you are going to do about it? The same old thing! Tweak the strategic plan, talk about it a lot, do the same old science anyway regardless of the plan, choose to promote the science you like, dismiss the science you don't, move on.

One of the biggest obstacles to doing meaningful research and to seeing any kind of real change, has been the fact that you, Tom, have turned a deaf ear to parents. We've been telling you about our children and their challenges for years. Read more at the Safeminds site.




Insel --- when you were a young man, God blessed you with a great intellect --
Yes God blessed you and allowed you to finish college early - Blessed you that you would attend medical school when you reached the right age
Blessed you that while you waited to come of age for medical schoool you were able to pass your time traveling with your girlfriend just like the old aristocrats use to do for their children - to help them lead the reast of us lower classes. --is that the problem -- you were raised with that silver spoon and you alone think you have the right to have a full life?


Oh Insel knows Autism Mom; I did not watch the last meeting - but they all say it is the same as all the other meetings I have watched.

The few on the board that would gladly look at vaccines - put up any proposal on the table -- he will not say - no -- but calls for a vote -- votes are seldom called for anything else.

They have it down pat -- he calls for a vote and he has the numbers - they know exactly how they are suppose to vote-- they don't discuss, or question -- just throw up those hands with a bored look on their face. Like someone just doing a job for a buck --


In his presentation at Autism Canada symposium, Dr. Richard Frye talked about how much more genetics and neuro imaging research (Insell pet research) get funded compared to immune, gastro/microbiome and mito). He even showed a graph comparing the areas of funding. Insel has tremendous influence at NIMH. Unless he's living under a rock, I can't imagine that isn't aware of the importance of microbiome research or doesn't know there's a tremendous need to allocate money toward immune, gut/microbiome, mito research in autism.

Here is Dr. Frye's presentation with graphs showing research allocations.

Additional Autism- microbiome presentations from the Autism Canada Symposium are here (Finegold, MacFabe, Vercoe). great information and well worth watching.


to Tom Insel, Director of the Interagency Autism Coordinating Committee (IACC)

We/I know that you are not stupid. You see, as we the parent see that the percentage of children struck Autistic increases each year and you refuse to use the that you have in your hand to find the cause, Shame on you!!!
Paul Shapiro

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