IACC Without Insel – How will it survive? I am saddened by Dr. Insel’s Departure from NIMH

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Alright – so, Chair of Interagency Autism Coordinating Committee (IACC) and Director of National Institute of Mental Health has decided to leave NIMH. I am saddened by this news. I have gotten to know Dr. Insel as the chair of IACC when I was a member and I cannot say enough good things about Dr. Insel. He is simply fantastic.

He is one of my favorite federal government researchers and leaders. He has so much compassion for autism children, adults and families. As our chair, he was always cool, calm and collected. Dr. Insel managed to always put our comments and words into cohesive and meaningful ideas during our 8 hour long meetings at NIH campus in Bethesda Maryland. He gave everyone a chance to speak and contribute.

Dr. Insel gave me so much opportunities at IACC and was the sole initial reason we had Federal funding for Somali autism prevalence research done by the UMN. I remember when I first contacted his office – he did not refer me off to his assistant or office staff. I got a phone appointment along with Dr. Daniels (I simply love her) and they were so kind, listened to our concerns, validated our frustration and decided to do something about it. They invited me to make our case to the full IACC committee during the public hearing which I did. Then towards the end of the meeting, Dr. Insel asked Director of CDC’s disability division – Dr. Boyle, Dr Dawson who was back then Autism Speaks’ representative and NIEH director to answer my questions. He told them to think about and do something about autism in our community. They did and did it fast. I think I got a call maybe few weeks later and was told to come back to DC which I did. It was in that meeting at IACC that a joint collaborative effort was announced. NIMH, CDC, NIEH, Office of Minority Health at NIH and Autism Speaks would contribute almost half a million dollars to Somali autism prevalence research. They would also provide technical assistance. Without Dr. Insel’s push and persistence – this would not have happened.

Another one of Dr. Insel’s many ways he supported us was when IACC members were writing a support letter to Sec Sebelius for autism therapy and most folks wanted to mention private insurance coverage. I asked to include public insurance coverage as well and Dr. Insel supported that 100% and asked CMS representative John to respond. And, as we all know now – CMS announced our last IACC meeting for the last committee that they now are covering autism intervention therapies for public insurance or Medicaid nationwide. Again, Dr. Insel was complete support of equity for everyone.

I think he simply rocks and I will miss his voice of reason and his calming ways he explained autism research with facts and compassion. I think Dr. Insel was the rock and the glue that held IACC together.

Here is Dr. Insel’s announcement.

Thank you Dr. Insel from the bottom of my heart of behalf of so many autism families in Minnesota and across the country. We will miss you and wish you all the best!

Idil – Somali Autism Mom & Minority Advocate

Category: Autism Policy