The International Autism Coordinating Committee met yesterday. You'll be able to watch a video of the meeting within a few days. Below are a few of the public comments and links to much more documentation. IACC has been a topic on AofA for many years -- mostly for its dearth of accountability and success in almost every area related to autism, which is a travesty.
Below are the first few sentences of some of the public comments, oral and written - each a poignant, realistic and pressing glimpse into autism as it exists in so many of our households. Not the sanitized version being forced fed to Americans.
From the IACC page:
The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.
The IACC mission is to:
- Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.
- Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.
- Increase public understanding of the member agencies' activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services.
IACC meetings are open to the public and include presentations and discussions on a variety of topics, including activities and projects of the IACC, recent advances in science and autism policy issues. A portion of each meeting is reserved for public comment. A summary of each meeting is posted on the meetings & events page. Read the written and oral comments in full here.
I stand before you today as a parent of a young man with autism and someone who has many concerns. Too many unfortunately to begin to mention within my allotted 3-5 minutes of oral comments. However as I thought about what would be most effective to say, and to be representative of the thousands of families I’ve met over the two decades since our son was formally diagnosed, I think it’s important to minimally ask for your consideration of the following and I would like answers to these questions:
The last full meeting of the IACC was July 8th, 2014 and the last charter was signed by former Chair Tom Insel in September, 2014. Why has it taken over a year to have this meeting and the new committee announced? I ask this because the charter stipulates there should minimally be two meetings per fiscal year and due to the urgency of the needs of the autism community in the U.S. I say urgency because there have been at close to a hundred deaths involving individuals associatedwith wandering incidents as well as homicides since that last meeting. Yes, the needs of the autism community are urgent and a year without a meeting of this committee needs an explanation.
There a lot of concerns I have that I would like to bring to your attention. However, I feel the need to focus on what is really happening with my family. As I tell you about my reality please keep in mind I am a representative of many families. You have all not met in over a year. Over the last year I'm sure you can look back and remember your days off and holidays. How you've been able to relax and enjoy life. Most people can do that, people with or without autism. However there is a subset of people who struggle everyday who have no days off and who have virtually no resources. They have no voice on this committee. There is certainly no organization of promoting a “life like this!” One where an individual is trapped in there body unable to communicate their needs. Smearing feces, projectile vomiting, , can't keep clothes on, can't communicate wants or needs, pains, feelings, OCD, psychotic episodes and the real kicker the meltdowns. The meltdowns are another term for hold my family hostage.
Dr. Deanna Mulvihill
From society’s earliest beginning persons with particular diseases have been separated from others and left behind with only a few caring others to oversee their suffering. In today’s world I feel that non-verbal and minimally verbal children with autism are the 21st century’sgroup that are left behind. Even in the Autism organizations their missions and focus is on the higher functioning persons or at least the verbally competent. Campaigns that focus on “Awareness” or “Acceptance” are evidence of this. Would anyone encourage a parent to just accept disease such as cancer or congenial heart disease? Many children with autism have physical symptoms which leave them in pain that is never addressed.
Is this 2015 or 1995?