Today the Interagency Autism Coordinating Committee (IACC) will be meeting for a workshop exploring Under-Recognized Co-Occurring Conditions in Autism Spectrum Disorder (ASD).
You can watch it LIVE here: http://videocast.nih.gov
Be sure to tune in around 12:45pm EST for our own Sunshine and her public comment, representing TMR.
On August 26, 2014, we posted a survey asking you, the Thinking Moms across this nation, what you would like to tell the Interagency Autism Coordinating Committee (“IACC”) and what IACC has done for you and your child with autism spectrum disorders (“ASD”). Today we are releasing the unedited results of that survey. Here at TMR we believe in transparency, something that we hope the IACC would embrace as well. While we could not read all these comments in the brief three minutes allotted for a comment, we are including them here so members of the IACC panel and the general public can read them. We are sharing them here because they represent a sampling of the collective body of parents who are working to improve the health and quality of life of their children and because these comments share what has happened to these children and what has helped them to get better.
In summary, 83% of the respondents had a child with ASD. Others had children with PANDAS, mitochondrial disorders, and a few that were recovered from ASD. We even had some thinking grandparents who responded!
Less than 5% of the respondents said their child was “born with” autism. 47% regressed suddenly, and 48% regressed gradually into autism. The age of regression ranged from six months to four years old.
Of those children that regressed, the majority of respondents (61%) believe vaccines were the trigger for the regression. Regression due to general anethesia was second with 9%.
The top four co-morbid conditions that children with ASD have (according to the respondents) are: gastrointestinal disorders (81%), sensory processing disorders (76%), allergies (59%), and immune deficiencies (57%). Respondents were able to choose as many co-morbid medical conditions as applied to their child so the total does not add to 100%.
Take some time to read through the responses to the question about what treatment has been most important for the respondent’s child’s life. Lots of healing ideas jam-packed into this section with 93 people responding!
Question 7 asked what the IACC has done that has specifically helped your child . . . and 100% of the respondents answered, “nothing.”
Question 8 was what two things should the IACC be doing for our children and many, many responses listed investigation and funding of science looking at environmental causes of autism (including GMOs, vaccines, etc.) and many requesting that biomedical treatments be studied and recognized by this group. And our personal favorite:
Listen to the parents (especially the THINKING MOMS).
You can read the entire survey results here: TMR_and_IACC_SURVEY_Fall_2014_final.
In case you miss the public comment, stay tuned here for another blog post with Sunshine’s comment!
~ Sunshine ☼ & Beaker
Beaker started her professional career in the lab as a bewildered chemist who often felt she was a round peg in a square hole! After the birth of her children and the unexpected medical journey that her youngest would take their family on, she found out the exact reason she had that chemistry degree and put it to good use as she set out to restore her children’s health. Along the way she found her true calling: sharing their family’s experience with other mothers and helping them improve the quality of life of their children, by staying true to their guiding light: their God-given mother’s instinct.