IACC July 2013 Meeting Recap

By Lisa Ackerman

The Interagency Autism Coordinating Committee (IACC) meeting happened on July 9, 2013 while I was on vacation. It has taken me too many weeks to catch up and listen to almost 8 hours of this meeting.  My sincere apologies for the time it has taken to comment about this important effort held in Washington, DC that only takes place four times per year.

It is important to note that a little more than 700 people watched the recent IACC meeting live; less than 500 additional viewers have seen it since it aired.  If you have not listened to the IACC and cannot participate in the meetings, I recommend you listen to the broadcast (1.)

I have written about the IACC who they are, their efforts and my concerns several times on this blog (2.)  If you have a child with autism and don’t know about the IACC, please read on and check the references.  It is important that you learn more about them!

I will focus mostly on the bright spots of the July IACC meeting. Do not miss listening to the following individuals:

• Dr. Richard Frye
• Dr. Tim Buie
• Wendy Fournier
• Dr. James Perrin (incoming 2014 American Academy of Pediatrics President)
• Idil Adbull
• Portia Iversen
• And as always Lyn Redwood

For the first time since inception, the IACC allowed for presentations on co-morbid medical conditions. That is a step forward.  TACA families have been talking about our children’s health related issues since the beginning of our organization in 2000. It is finally nice to see it being talked about outside TACA meetings (3.)

Families requesting support has grown immensely in the past six years. TACA has experienced 152% growth in membership since 2007.  Last year, TACA processed over 15,000 calls for help from families via phone, email and live chat.  Many of the calls were on medical co-morbid issues and health of individuals with autism. It is important to start directing efforts toward treatments for individuals who need them.

There was also discussion on the extremely critical issue of wandering (elopement) and autism.  National Autism Association’s Wendy Fournier and her team have done an incredible job with their toolkit for families (4) and in bringing this deadly safety issue to the forefront. Fourteen families have tragically lost a loved one diagnosed with autism during less than six months. We appreciate IACC committee members Lyn Redwood and Idill Adbull for pushing the American Academy of Pediatrics for pediatricians to start educating families about the dangers of wandering.

Dr. James Perrin discussed the 17 Autism Treatment Network (ATN) sites (5) and how they are addressing the co-morbid medical issues in the autism spectrum.  I personally, would still like to hear from families who have experienced care from one of these centers.  If you follow the reference below and read the comments, many families are still unaware about the ATN’s existence or if they offer the care needed by many individuals with ASD. Much more work is needed to get ATN’s fully functioning in order to help families living with autism.

A thrilling part of the meeting included Dr. Perrin listing the treatable co-morbid conditions in autism and the fact that they need our attention.  As mentioned above, Dr. Perrin will be the President of the American Academy of Pediatrics (AAP) in 2014. I am thrilled to see the new president understand the issues our families are experiencing so well.  We hope we see the needs of families living autism addressed versus being avoided.

At this meeting, he discussed treatable conditions in autism:

•       Gastrointestinal issues
•       Metabolic & immune conditions
•       Sleep disorders
•       Seizures

You must watch the two physician speakers’ Drs. Tim Buie and Richard Frye.  Please follow the doctors’ presentations at the following intervals: Buie at 1:07 and Frye at 1:58. They have information that has dramatically changed the lives for individuals with autism for the better.

Many notable comments were made in this meeting:

•  “Children with autism and GI (gastrointestinal) issues need a work up. This is their bill of rights.” – Dr. Tim Buie
• “We need to look at problem behaviors and refer them to be evaluated. They probably have a medical underpinning.” – Dr. Tim Buie
•  “Find treatment to achieve optimal outcomes, potentially with complete recovery.” – Dr. Richard Frye
• “These systems found are amenable to treatment.”  – Dr. Richard Frye
• “The IACC can help move things forward to achieve optimal outcomes.” Dr. Richard Frye
• “If just 10% safe and inexpensive treatments recover, this translates to 150,000 children in the U.S. ” – Dr. Richard Frye

Parent input at this meeting is critical.  Lyn Redwood, IACC committee member and parent of a child with autism said: “Parent comments have reported medical conditions being overlooked.  Appreciate these speakers and focus of the IACC.  The presentations shared information on low hanging fruit to improve individuals’ lives today.”

During this important exchange, Dr. Perrin reconfirmed “The AAP & ATN want to know best priorities and strategies needed to help with autism.” We are very excited about the prospects of anyone working together to help with the needs of the autism community.

At this meeting, there was a disturbing presentation on the medical diagnosis of catatonia (6.)  While I appreciate the help to uncover answers, this diagnosis and Electroconvulsive Therapy (ECT) treatment sounded barbaric and outdated (7.)  I’d love to see comments on what other families thought about this diagnosis and treatment on this blog.

Special thanks for ALL the public comments provided. These truly demonstrate the issues families face. Will the IACC committee listen?

“This committee does not fund research. What we do is provide advice to the secretary and stay open as a public forum.” – Dr. Thomas Insel. The statement was made to clarify IACC’s role. I wonder if the IACC is worth the money – almost $1 billion spent to date.

The committee meets four times per year. How can we expect the important initiatives around autism to be moved forward?

These are my questions for TACA members:

a)      Is your life better since the IACC was established in 2007?

b)      Is the $1 billion being well spent and have they helped your family?

After reviewing this meeting and previous others – there needs to be a more solid plan. In behalf of TACA families, I feel the following items need urgent consideration:

• Step 1)      Cohesive plan between the AAP & IACC in strategic planning and addressing autism.
• Step 2)      An “Autism Czar” to make autism a priority with authority to drive positive change.
• Step 3)      The ability to address medical issues identified by IACC with featuring doctors to create standards of care and a national education process of treatment for physicians.
• Step 4)      Establish an autism safety subcommittee to address the critical issue of autism and wandering.

Parents of children with autism need to chime in. Tell the IACC your needs. Ask for a plan. You must act now. Contact IACC and let them know your thoughts (8.)

References:

1)      The webcast from July 9, 2013 IACC’s meeting is available online here (almost 8 hours in length): http://videocast.nih.gov/summary.asp?Live=12921

2)      About the IACC: http://iacc.hhs.gov/about/
IACC Reconvenes: http://www.tacanow.org/blog/the-iacc-reconvenes/

3)      Many children with autism have other health problems: http://health.usnews.com/health-news/news/articles/2012/09/25/many-children-with-autism-have-other-health-problems-study-says

4)      National Autism Association Autism Safety tips www.autismsafety.org

5)      ATNS/ Autism Speak Conference blog https://tacanowblog.com/2013/08/06/autism-speaks-2nd-annual-national-conference-part-2/

6)      What is Catatonia? http://en.wikipedia.org/wiki/Catatonia

7)      What is ECT? http://en.wikipedia.org/wiki/Electroconvulsive_therapy

8)      Contacting IACC http://iacc.hhs.gov/contacting-iacc/index.shtml