By Lyn Redwood

I want to personally thank everyone who responded to the SafeMinds action alert to submit written public comments to the IACC regarding their child’s medical conditions this past month. And a huge thanks to Eileen Nicole Simon, Jill Rubio, Albert Enayati, Jeanna Reed, Nicholas, Carolyn, and Andrew Gammicchia, Brooke Potthast, Clinton Potocki on behalf of Dawn Loughborough, and Wendy Fournier who came in person to share directly with the committee their struggles to get appropriate medical care for their children and recommendations for what can be done to make things better. 

Historically, medical problems in children with autism have been completely denied by the medical establishment and the IACC committee. And, although the response from the committee after the panel discussion regarding co-morbidities was lackluster, the outcome at the very end of the day when discussion finally took place resulted in a unanimous vote by the committee to create a working group to focus on these conditions.

This was not the first time that the IACC has heard of co-morbidities. Parents have been meeting with Tom Insel and his staff as far back as 2002 telling him our stories of sick children and recovery with appropriate medical treatments. But just because we said autistic children had multiple underlying debilitating medical conditions didn’t make it so. Many impassioned discussions (like the one below pulled from IACC transcripts in 2009) couldn’t bring the committee around. The sad fact is that government moves at a snail’s pace, but passionate participants can speed up progress and make a positive difference for all those who can’t be there to speak for themselves.

Ms. Redwood: “For those of you who don't know me, I am one of the public members of IACC. And I just wanted to share with you a story about a little girl in Georgia who was 12 years old. She was being taken care of by her grandparents and they could no longer control her behaviors and she was admitted to a state psychiatric institute. And within a matter of months, she deteriorated. She became very ill. She writhed in her bed all night long. She vomited and by the morning she was dead. When an autopsy was done, this little girl was obstructed and she had infarcted her bowel. And that was never treated and never acknowledged. And I am sharing this story with you because I feel so strongly that these children have many, many underlying medical problems that are being completely overlooked because the focus has been on the brain and not the body. And I think it is an area where we can make so much difference. There is not any amount of behavioral therapy, or speech therapy, or assisted communication devices that is going to help with a child who is impacted and has infarcted their bowel. And we are missing so many opportunities to improve the health of these children. Oftentimes when we these underlying medical conditions are addressed and treated, their behaviors get better. Some kids have even lost their diagnosis. So we know they have immune system abnormalities. We know they have ulcerative colitis. They have metabolic stress. They have low levels of glutathione. They are under methylated. And there is so little focus on addressing those medical issues. We have protocols in place now for treating inflammatory bowel disease. But it is not anything that is even considered. And I know {another IACC member] mentioned yesterday that the pediatricians are so stressed, they don't have time to really look at these children medically and it is an area where we could make a tremendous amount of improvement and it is not anything that requires a genetic test or an MRI or anything except a good physical exam and some laboratory work. So I just want to put in a plug to please look at the children's bodies as well as their brains.”

After the comment above a developmental pediatrician on the IACC took “offense to this description of children with autism as being ill and sick” and I was actually accused by a Federal member of the IACC in a handwritten note passed to another committee member of “pushing autism as a multi-system disorder in order to feed into the vaccine injury awards”
See Dr. Story Landis Resigns from IACC.