Katie Wright: Autism Families Share Their Personal Narratives and Treatment Priorities with IACC
Part II (Read part I HERE.)
IACC treatment research priorities include:
More research into tuberous sclerosis
More eye gazing
Facial recognition training
PECS (actually good but has been around for a dozen yrs)
Using an educational video to help NT kids accept ASD kids in the classroom
IACC is NOT concerned with funding treatment research into regression, treating GI disease, chronic and severe diarrhea, acute allergies, dietary interventions or interventions for autoimmune dysfunction.
Instead IACC supports parental age as causative factor in autism and the change of seasons as a causative factor in autism. I am completely serious. IACC specifically rules out vaccine research based upon the questionable work of Dr. Eric Fombonne, Canadian psychiatrist, sometime vaccine company employee and professional paid govt witness against autism families in vaccine court. IACC cites Fombonne’s work without noting any of his myriad conflicts of interests.
Here is the feedback from autism families regarding treatment research priorities:
“He could speak when he was 1 and then it went away- WHY? We need research to BRING HIS VOICE BACK.”
“This is so important. I have a nonverbal 24 yr old and a 26 yr old who is a wonderful daughter and loves her brother, but doesn’t want to live my life. Don’t forget to look into why some have a more severe disability.”
“My grandchildren got autism from vaccines. It can be prevented.”
“Help us. Or better yet, help us help YOU.”
“As a parent of two children on the ASD spectrum who are often referred to as low functioning I am disappointed in the lack of research focusing on this population.”
“Why did they regress?”
“My child had an infant stroke caused by pitocin.”
“Negative aspects of autism have been addressed naively…We have 70 years of poor progress.”
“My daughter regressed immediately after her second birthday. Within days she lost potty training, began having mini seizures, developed chronic ear infections, no longer participated in activities she had previously engaged in vigorously and developed serious constipation and diarrhea. Her sensory behavioral regression continued steadily until her biomedical intervention…She responded…After a review of her medical records from birth to 2 yrs there is a pattern of adverse reactions…she experienced severe vaccine injury.”
“HELP NOW! WE ARE LOSING A GENERATION!”
“Don’t ‘have a dialogue’ fund vaccine research.”
“(Autism therapy) is bankrupting us! Help us!”
“Why is the entire subject (of vaccine research) off the table? Why is IACC determined to close this avenue of research?”
“Study regressive children.”
“Publicize to the world that these kids have a medical condition…Take care of our kids.”
“Three years after the CAA’s passing there has been NO research that addresses my daughter’s debilitating GI pain, failure to gain weight, extreme self-injurious behavior and compromised immune system.”
“Focus on individuals at the lower end of the spectrum.”
“My son regressed into autism following vaccinations. Medical problems were caused by vaccinations….The current CDC recommended vaccination schedule has not been studied for adverse health outcomes. The American children and their families deserve this study.”
“Study the full vaccine schedule.”
“I have researched the causes of my son’s autism for 1,000s of hours. I am certain the vaccine schedule in infancy caused my son’s tragic regression…How many more children need to suffer?”
“About 50% of people with autism are nonverbal…We need to encourage research in this area ASAP.”
“ASK the autism community about our kids!”
“IACC does not have enough parents and autism groups on the committee.”
“50% of autistic people are trapped in their own bodies unable to let people know if they are being hurt or if they are being abused. If that isn’t the #1 priority, I don’t know what could be.”
“Research seems to focus on high functioning children.”
“I am a speech therapist with 25 yrs experience. While in the past I served few students with autism…I served more than 20 last yr. More than half of these children are nonverbal…Please do not forgot these children with autism in the severest form.”
“I am writing as a DC psychologist who would like you to include nonverbal and low communicating people (in research)…For too long this population has been left out of your future research designs.”
“My son is nonverbal autistic…Nonverbal autistic people have nothing”
“Please make low verbal and non verbal people a priority.”
“Focus on quality of life aspects of autism….How can my child cope with frustration so that he/she doesn’t hurt herself/himself or others?”
“Please consider allocating funds for people with severe autism, who are a very vulnerable group and in addition require the most care. Please be equitable.”
“Autism is worse than most diseases we are vaccinating against…The increase from 11 vaccines to nearly 40 today (for under 2s) needs to be adequately studied…Be smart. Be Neutral. Honor your commitment.”
Katie Wright is a Contributing Editor to Age of Autism.
In the early 90's I was screaming from the rooftops after watching Barbara Lowe Fisher on a talk show describing MY son as she retold her story described in her book " A shot in the Dark ". I warned everyone I knew back then. My son "regressed" and lost his ability to speak over a period of 6 months.
Now almost 20 years later (and an additional child with Autism) the debate rages on.
When will our children have a voice?
Posted by: Julie | December 22, 2009 at 12:15 AM
How can I get pushy and get involved, and best position myself to speak to the IACC? Which congress-critters are holding their leashes? Which subcommittee is it under?
Posted by: TexasDad | December 21, 2009 at 07:16 PM
Today I feel as if we are standing on the outside of a room with soundproof walls and windows. They cant hear us, and they are afraid to come out to do so.
Posted by: K Fuller Yuba City | December 21, 2009 at 04:48 PM
"Using an educational video to help NT kids accept ASD kids in the classroom"
Posted by: Jake Crosby | December 21, 2009 at 12:05 PM
The IACC puts on a grand show when they go to Congress to update the government on autism.
Experts like Thomas Insel can tell us about the cutting edge gene studies, BUT THEY NEVER HAVE ANY ANSWERS. They refuse to listen to parents and they pretend they've got all the time in the world to find answers.
Meanwhile the suffering of our children continues.
Why are they even in existence?
Posted by: Anne Dachel | December 21, 2009 at 11:02 AM
Thank you Katie. What's with all the comments about non verbal or low verbal kids? I thought autism was supposed to be milder now? You know just subtle differences and that these kids would have just blended in the past and we wouldn't have noticed them. These comments at least let me know there are other many kids out there like my son.
Posted by: Andrea | December 21, 2009 at 07:43 AM
Eric Fombonne? He's been thoroughly discredited by his own pals!
The Cochrane Review had this to say about his very first "study" on vaccines and autism:
"The number and possible impact of biases was so high that interpretation of results was difficult."
This is from a review where the second author, Tom Jefferson, served as ad-hoc legal advisor to MMR manufacturers in 1999. There is absolutely no reason for Fombonne's research to be discredited in the company of friends like this other than the fact that it's complete crap.
Looks like the IACC is even more biased than the Cochrane Review, that's pretty bad!
Posted by: Jake Crosby | December 21, 2009 at 07:41 AM