April 14, 2007

Sneaky Senate

The politics of Autism just gets odder and odder. It seems to be about being able to say that things are being done with out doing anything, and that open conversation is taking place when the conversation is being strictly controlled. The voices that would ask the right questions are not allowed into the room.


Surprise Senate Hearing on Combating Autism - Community Not Notified

We learned for the first time Thursday that the Senate has scheduled a hearing Tuesday, April 17, 2007 entitled "Combating Autism: Undertaking a Coordinated Response". There was no notice of this hearing to the many autism organizations other than Autism Speaks and possibly ASA. We learned of it only because one of our CAA Watch A-CHAMP District Leaders inadvertently heard of the hearing from a highly placed source.

Many of us have placed calls to Subcommittee Chair Sen. Harkin's staff, including members of our strong Iowa contingent. None of us have had the courtesy of a return phone call.

The list of witnesses is pasted below.

On the second panel are two representatives of Autism Speaks and Dr. Judy Favell, former President of the American Psychological Association, Division 33. Dr. Favell is a behaviorist who received a large Dept of Education grant to research the provision of services to children with autism by interactive video. The program, called "telehealth" involves installing a video camera in one's home so that families may engage in therapy sessions at long distrance by video.

Dr. Favell appears to be closely associated with three for-profit ventures. One is Advoserv (www.advoserv.com), a Florida corporation that provides residential and other services in Florida, Delaware, Maryland and New Jersey. The second is Cnow, billed as committed to being the "nation's premier telehealth solutions provider." (http://www.cnowinc.com/) The third venture is the National Institute of Telehealth, which develops the behavioral treatment plan that is implemented via video. Telehealth and telemedicine research is being funded by NIMH, headed by Dr. Insel, one of the witnesses at the hearing. (http://tinyurl.com/2uzyje)

No stakeholders are participating in this hearing.
Welcome to the BRAVE NEW WORLD of autism.

Senate Committee on Appropriations
Hearing Schedule for the Week of April 13, 2007

For more information, media should contact (202) 224-3904.

Tuesday April 17, 2007
2:00 p.m. Labor, Health and Human Services, and Education SD-124
Agenda: Combating Autism: Undertaking a Coordinated Response

Witnesses: Panel I:
Dr. Julie Gerberding, Director
Centers for Disease Control and Prevention
Atlanta, Georgia
Dr. Thomas R. Insel, Director
National Institute of Mental Health
Bethesda, Maryland

Panel II:
Robert C. Wright
Vice Chairman and Executive Officer
General Electric Foundation
Fairfield, Connecticut
Dr. Judith E. Favell
Chief Executive Officer, AdvoServ
Executive Director, The Celeste Foundation
Mount Dora, Florida
Bradley Whitford
Volunteer Spokesperson
for Autism Speaks Organization
New York, New York


Anonymous said...

Do you wonder why the CDC never mentions the risk factor of paternal age on its sites? Do you ever wonder why the hispanic community has a lower rate of autism? Is autism a money making venture for many people? Does the public have to figure out autism, its causes, its nature, its prevention, its varieties, each person for themselves because no one in science, in medicine, in epidemiology, in neurobiology, in psychiatry, in genetic research will tell it like it is? Is the DSM IV "new definition of autism" set up to confuse the public? Are some people in the spectrum happy and satisfied with their lives?

Why was this meeting held without the public being invited or even informed?

Ginger Taylor said...

What great questions you have!

If only there were some sort of national forum where you could pose such important questions...


Anonymous said...

The question that comes to my mind is this: Is this done - supposably - against the will of the parents or legal guardians? This cannot be done forcibly can it? (Where's the legality on how this is performed?)

Anonymous said...

Did you see the meetings? I was very, very pleased with what I saw. Kudos to Sen. Harkin for asking important questions. There WERE families there, that were able to speak about their experiences. (aired on CSPAN-2)

I hope it was the first of many sessions, that may very well lead to earlier intervention, more accessible therapy/treatment.

Anonymous said...

The telecumuting education as seen on TV looks wonderful for Autism. Please read below how this terrible disease might be avoided.
I am aware of a wonderful school in Mass. which takes young self abusive Autistic students through a program with a speech therapist.
The system rewards each student as they work with mirrors etc. and gain some language.As the do something right, the student is rewarded with a cheerio or the like.

The progress is very good, and as language skills develop the self-abusing behavior stops!
As the student matures board games are played to encourage language. When one stops on a place, he or she must make a sentence or two about the subject requested by the game. Furthermore students are taught how to type, and are given play money and a list to shop in a play grocery store, before the same is done in a real(always confusing) grocery store.
I no longer remember the name of this school, but a video about it was in the Library at Ramapo College in Mahwah, New Jersey.

These comments of mine below have been put in the comments secton of the Lancet.

Is anyone interested in looking at the co-relation of increased Autism frequency and the introduction of trans fats?

Dr. Christiane Northrup,MD gives the following advice in her book Mother Daughter Wisdom.
"For pregnant women:
Avoid partially hydrogenated fats, which occur mainly in packaged foods and will be identified as such by the label. They interfere with the metabolism of essential fatty acids and have known deleterious effect on cellular membranes.In fact, the introduction of hydrogenated fats in the food supply has been associated with the increase in ADHD,depression,learning disabilities, mood disorders,etc." page 56