A Change for #Autism?

By Lisa Ackerman

On September 15 2015, Dr. Thomas Insel announced he will step down as a director of the National Institute of Mental Health (NMIH) and Interagency Autism Coordinating Committee (IACC) (1.) This change is effective November 1, 2015.

On this blog we have written about the IACC and their efforts since inception back in 2006. You can find those blogs here (2.)

For the new incoming NIMH and IACC Director, I would like bring you up to speed on autism. It is the fastest growing disability affecting the most children in the United States (3.) A Massachusetts Institute of Technology (MIT) research scientist has made a dire prediction that autism could affect 1 in every 2 children in the U.S (4.) Autism is also expensive, recently soaring from $168 billion to $268 billion annually (5.)

After serving the autism community for 15 years and working with over 45,000 families, I see areas of needs that can and should be addressed. Here is a summary of changes that can help families living with autism:

Based on CDC autism estimates, declare autism an epidemic and public emergency. We need to treat autism with the urgency it warrants: 1 in 68 children are living with autism in the United States.
Define and collect a true census of individuals affected by autism. It is important to indicate that four year old estimates based on survey samplings do not work. Real numbers and details such as age groups and severity are urgently needed to review and address their unique needs.
Push for subtyping to determine appropriate treatments and therapies to meet the unique needs of each individual (6.)
Since 2006, over $2 billion has been spent on the IACC. Families are not experiencing any changes to services or help for these costs. No innovative treatments have been found. I would like to propose the following changes to the IACC:
– Consider a more diverse board at the IACC to include some of the world’s researchers in cause and innovative treatment such as: Dr. Martha Herbert, Dr. Jill James, Dr. Richard Frye, and Dr. Dan Rossignol. It is my opinion that the current IACC board lacks in ground-breaking research and medical treatments happening today
– Push the U.S. Dept. of Human Health (HHS) and IACC to collaborate and recognize the needs for services and support for families. We cannot operate in a vacuum.
Collaborate with families via support groups in identifying needs for those living with the autism today.
Outside traditional therapies, medical treatments are helping individuals with autism live healthier. Based on new research, co-morbid medical issues exist with autism. Where are the initiatives addressing these concerns to define answers? (7.)
Identify a task force to address the current and future needs of adults living with autism.
Prioritize and evaluate all possible environmental causes of autism.
Operate with a sense of urgency in your strategic plan. We cannot waste another moment. We must drive for answers.

I would be happy to discuss these items in more detail with a future director of the NMIH and IACC. We need positive change. We need help for families and individuals living with autism. We can no longer afford the status quo.

References:

1) Insel Departure announcement http://www.nih.gov/about/director/09152015_statement_insel.htm
2) IACC TACAnow blogs:
https://tacanowblog.com/2015/08/07/why-would-a-government-panel-question-universal-autism-screening/