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Katie Wright on IACC

Review-cover By Katie Wright

I apologize to Ms. Susan Daniels, the Communications Director of NIH’s autism research programs. In the past I have been critical of IACC’s transparency regarding access to public meetings. The situation has greatly improved so thank you Ms. Daniels. I appreciate the fact that IACC meetings are quickly archived and available for viewing any time. The meeting agendas, slides, list of speakers are also publicly accessible for downloading. The e-mail reminders regarding upcoming dates and times of meetings are very helpful as well.

So many autism meetings remain inaccessible to the public and involve only token stakeholder representation.  The NIEHS’s recent environmental science meeting has not been archived on their site nor have they made the DVD available for public viewing elsewhere. In September the NIH and Canadian NIH and Autism Speaks sponsored a conference entitled “Translating Genetic Discoveries into Diagnostics.” Once again this meeting was not publicized, webcast or archived for public viewing. What stakeholders were involved, if any? Were family member allowed participate or just serve as audience members? Were representatives from national autism service/ research organizations, such as the NAA, SafeMinds, Generation Rescue and the Autism Society of America invited?

I hear so much talk, talk, talk about how important stakeholder input is but how about “translating” those promises into actual action.  “Translating” needs to start at home.

 Scientific organizations must prioritize community wide (press releases on all organization websites, Schafer Report, placing an ad on AoA or other community online newspapers…) notification of meetings, create archived webcasts and energetically pursue public comment. We also really need to see some federal autism meetings outside of the DC area! If stakeholders can travel to IACC or NIEHS, why shouldn’t IACC travel to NYC or LA once or twice and hear from the families in the big cities?

This IACC meeting started with a great lecture by the Assistant Director of Special Education for the U.S. Dept. Of Education. Dr. Alex Posny spoke about service, gaps, access issues and priorities. Dr. Posny brought a great deal enthusiasm and energy to the discussion. It was nice to see a federal employee who really feels a sense of urgency.

The next presenters were Lori MacIlwain and Wendy Fornier of the National Autism Association. Lori and Wendy spoke about the AWAARE program, which is dedicated to preventing and stopping the wandering deaths of ASD children. Lori and Wendy are mothers of children with autism. Most children with autism are impulsive and have little to no appreciation for danger. Despite a parent’s best efforts to watch their children every moment of the day and night, many ASD children will find a way to wander. Most ASD children have no physical disabilities; they run, run fast and sometimes don’t stop running until someone catches them.

Thank you Wendy, Lori and the incredibly brave Sheila Medlam for detailing the safety needs of our kids. These three Moms articulated how and why traditional search procedures are ineffective for children affected by ASD. Nonverbal ASD children cannot respond when they hear their name being called yet may be lost very close to their home. Wendy and Lori emphasized and how cost effective tracking devices are yet most families lack access to such devices.

 Dr. Dawson of AS stated that wandering problems must be addressed immediately by IACC and that AS fully collaborates in the AWAARE program. Dawson expressed her incomprehension tracking devices are widely available for pets in needs but not ASD children. Ellen Blackwell stated that relevant Medicaid safety programs are already in place. Alison Singer and Lyn Redwood countered that Medicaid’s efforts are not working and that ASD families sometimes endure years of delays trying to access help from Medicaid.

I am going to end with a synopsis of the Yale presentation. I really, really wanted to like Dr. Kevin Pelphery’s work. He has 2 children on the spectrum (which I am guessing now probably means HF).  Pelphery spoke for almost 15 minutes about eye tracking, the social brain and social perception. I kept think why? Why? Why? Why would a parent of an autistic child see this subject matter as innovative or an urgent scientific priority?

I learned nothing I did not already know and I learned nothing that would help children living now with autism. There was no insight into causation factors or treatment. If we are not addressing one of those two problems such research is an academic luxury we can ill afford. Yes, yes always the sales pitch that eye tracking technology will help detect autism early. But I have a radical idea. How about we use our old school technology- specifically our own 2 eyes and look for signs of poor eye contact in babies on our own?  No expensive machinery necessary! All right, now we are saving money!

This is exactly why I loved the DoD research experience. They place a premium on innovative and emerging areas of impactful research. Let’s move with the times IACC! No more eye tracking part 27 or baby sibling part 45. IACC and the NIH need to put their money where their mouth is and start investing in the treatment and environmental research they talk, talk, talk so much about but never seem to get around to funding.

IACC Part 2 will cover a presentation on the genome, bizarre incompetence on the part of the NIEHS, and a fascinating but sad discussion about the Somali autism cluster in Minneapolis.

Katie Wright is Contributing Editor for Age of Autism.

 

 

 

 

 

 

 

 

 

 

 

 

 

Comments

Eileen Nicole Simon

My 48-year-old autistic son now wears a LoJack bracelet. March 10, 2009 he ran away from his group home in the middle of the night, and was not found until May 1. My agony and grief during that period are almost indescribable. My son is "high functioning" and we are writing a memoir together about our lives. He has described in minute detail where he went and what he did during the seven weeks he was gone, but so far has explained his feelings about running away only as "high anxiety".

I attended the Oct 22 IACC meeting and made a public comment requesting a research focus on brain mechanisms underlying developmental language disorder. My son suffered a traumatic anoxic birth, which is known to injure auditory centers in the brainstem. In the discussion of public comments my comments, about invasive obstetric procedures and those of Caroline Rodgers on the dangers of prenatal ultrasound, were pointedly ignored.

The current IACC "strategic plan" is weak. We need to pressure them to stop ignoring environmental factors that are clear predispositions for autism.

Carolyn M

Aspie,

I find your comment to be very condescending. In addition, you have once again assumed that all children with autism are like you were as a child. Katie Wright's post should serve to inform you that this is not a valid assumption.

There are parents of children with autism who have to put alarms/extra locks on their home's windows and doors in order to try to prevent their children from "wandering" and to keep them safe - you can read on this site of instances where children with autism have "wandered off" and died (as well as happier ones where the children were found unharmed). This does not happen because the children in question are "bored".

Katie Wright

Dear Aspie,

I recall the same feelings when shopping w/ Mom mother as a kid.

What I am talking about is different. You and I knew and understood danger, even as small kids. At 8 I never would have tried to run across a busy street alone. I never would have gotten out of bed in the middle of the night, unlooked the front door and run outside. I never would have ignored an adult calling my name if I was near a pool or the ocean. Believe me, my parents did not have a perfect child just a typical one.

Christian isn't bored- he is impulsive, he loves water and has no ability to gauge what is safe. Worse, he is nonverbal so when he has been lost he cannot respond to his name being called.

Do you understand the difference?

Aspie

Here's some insight on why your kids wander. When I was a child, I wandered because shopping bored me to tears. I'd sit down, read books and magazines,look at the lobsters, read recipe cards, and browse through shelves. I'd always wander away because I couldn't take being in the same place for so long. It was sheer torture to me. It isn't that your children are "confused", it's that they are bored to tears.

Natasa

Katie,

I am with Jillba and Kathy below who are wondering what was said during those "missing" five minutes during summer IACC meeting. Why is everyone, including yourself, playing dumb and refusing to answer?

Talk about transparency!

Another concerned mom

DITTO. This stakeholder thinks it is definitely time for the "investing in the treatment and environmental research"

Elizabeth (Autism Mum)

Dear Autism Community from Australia,

This subject is a little off track, but my 8 year old, autistic, non-verbal son had a bad episode at school the other day. He lunged at his carer for no apparent reason.

He has a little room with a one-on-one carer adjacent to peers. When I walked into his room the other day there was a distinct chemical smell that was even overbearing for me. The room has no ventilation and the only possible cause of the smell was a white board marker.

So I happened to be in Toys R Us today and found some marker pens made in China for the Disney:Pixar (Toy Story) range.
On the bottom right hand side appears a WARNING sign -

"Warning: This product contains a chemical known to the State of California to cause birth defects or other reproductive harm".

Does anyone know which chemical/s they may be? The manufacturers have conveniently not listed any ingredients on the package?

OR does anyone know of any recent litigation cases about the marker pens??

Perhaps my son being soooooo HYPERSENSITIVE (and I do not need to explain why)but perhaps inhaling the markers fumes has caused his reaction?

Anyway, until I do some more research on the matter the PSYCHOLOGIST is getting involved to deal with his BAD BEHAVIOUR!

Good Luck to them, once again TREATING THE SYMPTOMS AND NOT THE CAUSES!!!

We have a classic saying here in Victoria/Australia, our number plates on our vehicles read - VICTORIA THE PLACE TO BE- we in the Autism World say - VICTORIA THE PLACE TO BE UNLESS YOU ARE AUTISTIC!!

P.S Patrons99- I am still investigating the Aboriginal's health pre & post-vaccinations.

Kristine

My son has a tracking device and it is a bracelet that he wears on his ankle. It is not "in" his body. I do worry about EMFs and the like but this bracelet for him is a necessity. Lori personally called me and arranged for my son to have this and the NAA funded Project Lifesaver in my community. I am forever grateful to them. We may never know the number of lives they have (or will) saved.

Autism Grandma

Re: "eye tracking" devices for early detection:

What the F? What about some stool samples to determine levels of healthy intestinal flora, and some HEAVY METALS testing for God's sake. They don't want to find any real indicators though because our children's lab testing points the blaming [middle] finger right at vaccines.

Re: "I hear so much talk, talk, talk about how important stakeholder input is but how about “translating” those promises into actual action."

It is transparently obvious by now that their official job description is to "Go into these meetings and pretend that you are really listening to these nutcase parents, so we can keep them off of our back while we figure out more ways to deflect the blame for autism away from vaccines."

Jacqueline Gauthier

Ms. Daniels is a wonderful person -- truly an exception to autism politics as usual. Thanks Susan for doing everything you can to bring all the brilliant minds to the same table.

WILLIE

VACCINES CAUSE AUTISM

"Mary - Elopement is real and dangerous in our community. If the IACC can help get gps tracking devices into the hands of first responders and families faster, I support it without reservation"

ARE YOU KIDDING? ANYBODY WHO SAYS OR AGREES WITH THIS NEEDS PROFFESIONAL PSYCHIATRIC HELP

This government is out of control and is abusing its and everyone else's citizens. Elopement as an excuse to inject microchips into already injured children from the people who injured them in the first place and refuse to accept responsebility? These same people just admitted to giving people in Guatemala syphillis

http://www.mcclatchydc.com/2010/10/01/101473/us-admits-it-infected-guatemalans.html?storylink=MI_emailed

PLEASE PEOPLE SNAP OUT OF IT!! DEMAND ANSWERS AND ACCOUNTABILITY AND DO IT LOUDLY


VACCINES CAUSE AUTISM

Henderson

Go Katie. Go Katie. :) I'm rocking here. Yes, we absolutely need more transparency.

RE: Eye tracking. No, we do not need more studies re: how poorly adults and children track.

However, I think the wee-infant eye tracking studies are very cool (and need go be replicated in larger numbers to have scientific validity).

A couple of years ago, Dr. Mel Ru