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IACC Meeting - Will There Be Progress for Our Loved Ones?

IACC autismThe 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.

Carolyn Gammicchia

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.

###

Casandra Oldham

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?

Comments

PANDAS Mom

I dug into the IACC website to see what they've been up to and what they feel their priorities are. It looks like they haven't done much of anything - besides play musical chairs - for the last 3 years!

https://iacc.hhs.gov/

Gayle

The IACC is a sham and a pathetic response to the autism epidemic. Meanwhile the numbers are increasing at an alarming rate and the answer for this agency is to convene a meeting once a year to provide NOTHING for us families suffering with our afflicted children. Our son's doctors tell us year after year that vaccines do not cause autism and that it is a result of our defective genes. There is no such thing as a genetic epidemic.

Patience (Eileen Nicole) Simon

Birgit Calhoun, thanks for pointing out the message on the screen!!!

I actually fell asleep watching the IACC meeting on my computer. I will sample it again when the link goes online. It seemed mostly like more blah blah blah. Did anyone other than John Elder Robison discuss public comments? He is certainly ill-informed about language impairment in autism.

Jenny, I love your idea of a mirror IACC. AoA in many ways accomplishes this.

Birgit Calhoun

I love the picture of the PET Computer in this context. I wished the statement on the screen had lasted longer than the PET or was really a sincere effort. To take autism seriously we have to have the kinds of people behind autism who tackled the AIDS epidemic. Where are the scientists who truly understand what kind of condition autism is?

Jenny

There needs to be a mirror citizens' IACC - just call it IACC-C (for citizens).
Every time IACC meets - the IACC-C meets. IACC-C will come up with a logical blueprint for progress. It will have to address both the verbal/Aspbergers population as well and the unverbal, medically disabled population. It will have to come up with more medically accurate catagorizations. It will forward recommendations to all the same people that the IACC does, and beyond. Whereas those receiving agencies continue to stagnate on the issue, IACC-C will have to have subcommittees mirroring the gov't agencies that aren't working on the problem, pushing the recommendations out to the rest of the public and medical practitioners.

Greyone

Thanks for the link to the written and oral comments.
Valuable (including the "derogatory langauge excluded"!).

go Rand

Will they be able to find a replacement as pathetic as Tom Insel ???

I am sure they will try...

I would suppose Dr. Insel can now be seen riding around the Google campus on a three wheel bicycle searching for the "Autism gene"

Benedetta

The link does say there is a meeting and there is a place to hit video but it goes to some kind of computer gibberish instead.

I was wondering how come they were videoing it to begin with - cause is was showing the very ugly underbelly of the the NIH, CDC and all those government types and how they really work.

I think we as a public got a rare glimpse - I guess they thought that they could fain openness cause well let us face it - they are arrogant and really think that the public are slow, stupid and very busy cattle; that would not bother to watch anyway.

To their surprise many of us were.

So, is this the end of being able to access the videos? Is this the end of being notified when they are going to have a surprise meeting?

Those are my two questions.

Oh third question; Who chaired the meeting?

CD

I also did not appreciate John Robinson reading and summarizing the written comments and offering his skewed opinion. Why was no scientist or medical professional put in charge of this? I'm really not interested in the ponderings of a ND self-advocate who really doesn't grasp the needs of the medically-complex, sick children we label autistic.
I was hoping for a more productive IACC group but it looks like it will be the same old, same old. Sigh.

Greg

Someone or Something starting to take the autism epidemic serious? It’s about time! I watch the wall-to-wall coverage of the Paris Attacks, and as awful as they were, they don’t even compare. In terms of the sheer devastation scale of the autism epidemic, the Paris Attacks don’t even amount to mosquito bites. With the autism devastation, we are talking 1 in 45 kids – and likely higher – that are permanently maimed. This does not even include all the other cases of SIDS, LDs, ADHDs, allergies, diabetes, cancers, asthma, and so on. And the devastation has continued unchecked for decades!

Bob Moffitt

Quick reading of the "written" comments raised a simple .. common sense .. question for IACC members .. why not finally address the two major criticisms .. comments .. which were:

#1 .. Will the IACC .. ever .. officially recommend a scientific, independent study of "vaccinated v. unvaccinated" populations .. which parents have been recommending to the IACC since its inception?

If not .. please make a clear and definitive public statement .. that such a common sense study will NEVER be supported by the IACC. At least that way .. the parents who beg this study be done .. year after year ... for over a full decade now .. will not continue wasting their time recommending a study to a Committee that has already decided they will NEVER support such a study.

#2 .. Will the IACC demand Congress support ongoing efforts of Rep. Bill Posey .. in his quest to hear sworn public testimony of CDC "whistle-blower" Dr. William Thompson .. who has publicly stated he participated in a "cover-up" of manipulated research that eliminated damning evidence that black children are at significantly higher risk of autism if administered the MMR vaccine prior to 36 months of age?

This question also permeates throughout many of the written comments .. and .. the IACC has a duty to PUBLICLY respond to those inquiries ..

I would respectfully ask the IACC why they bother to receive public comments .. such as the two mentioned .. if the IACC .. finding them too controversial .. has no intention of acting upon them?

I mean .. that is the whole purpose of their being ... is it not?

John Stone

It doesn't meet for a year and Insel disappears:

http://www.ageofautism.com/2015/09/if-the-iacc-had-met-it-would-have-to-consider-the-cdc-whistleblower.html

And still the questions are not answered.

Patience (Eileen Nicole) Simon

Why can't I agree with John Elder Robison about neurodiversity?

Why do I not get the chance to engage in back-and-forth conversation with him? Why is traumatic brain injury (TBI) such a huge concern? Why do doctors warn about the risk of stroke from high blood pressure? What treatments are begun for someone who has a stroke?

After someone has a stroke, are family members told to just be accepting and seek early intervention? Is aphasia from a stroke simply a matter of neurodiversity?

What education in neurology do members of the neurodiversity movement have? How can they expect me to reject my education in neuroscience? What evidence can they provide that my decades of experience working with signals and coherent retrieval of data in computer systems should be rejected?

Will any of the IACC members with medical education ever discuss the public comments I have posted?

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