Note: Thank you to Katie Wright for slogging through IACC's meetings. How she does it we'll never know! The Next IACC meeting is January 17th.
By Katie Wright
The 11/17 Inter-Agency Autism Committee meeting began with the CDC’s presentation on SEED, their autism “research” program. That’s right, laughs front loaded at this show. Over the past 14 yrs SEED has spent approx. $10 million and has published about 5 autism studies. The sad, sad (and I mean that in terms of value to the ASD community) research they presented yesterday was in exercise in irrelevance, govt. waste and amateurism. Throughout the bizarre presentation and even after some tough questioning, SEED Dir Dr. Stuart Shapira appeared inexplicably pleased with himself. Impossible to fathom why that was.
OK let’s start with SEED researcher Dr. Ann Reynolds. The fact that Reynolds’ presentation was on ASD/ GI science made me hopeful. I thought “Great! Finally the CDC is focusing on helping this underserved sub population.” Oh, no! I could not have been more wrong. Reynolds presented the umpteenth study merely showing that GI disease IS indeed a problem for ASD people.
Newsflash, right? Sydney Feingold did this better in his 2002 study with 1/100th the budget. The Reynolds study is lazy and unfocused. Dr. Reynolds herself seemed strangely unfamiliar with the material she was presenting, as if it were her first time seeing it. I’m not kidding. The SEED team is so inept and apathetic they gave up on collecting the research participants’ medical records “because it was too difficult.” The medical records of ASD/ GI kids is the biggest key to unraveling this issue. These children have a significant pattern of chronic infections, illness and adverse vaccine reactions prior to the onset of the ASD/ GI disease. SEED has access to ALL this precious data but choose not to work hard and to give up. So pathetic and inexcusable. Reynolds and the whole SEED team presented their information as if they were describing a sunny day in California. Reynolds had zero affect and expressed zero concern for the autistic kids living with terrible and chronic GI pain. She explained that the “treatment” for ASD/ GI disease was laxatives. What is this 1990? Even CHOP doctors state that children's’ laxatives contain a dangerous amount of arsenic and should be used sparingly, NEVER as ongoing treatment.
Why is such amateur hour leadership tolerated regarding critical medical treatment for children with developmental difficulties? How is it even possible that these doctors know so little about ASD / GI issues and offer virtually no real treatment to these suffering, disabled, young people? Untreated GI issues can lead to a refusal to eat, self injurious behavior, inability to attend to therapy, sleeplessness, constant irritability, etc. Inexplicably, Dr. Reynolds seemed totally oblivious to the seriousness of this condition. Just for starters why didn’t the SEED GI study test for IgE and IgG antibodies regarding food allergies? Why not place kids on Specific Carb Diet for 2 months and see if symptoms abate? The diet is so healthy! Fermented foods and healthy fats are much easier to digest than gluten or casein. Instead of arsenic containing laxatives try “smooth move” tea, prunes, lots of water- anything. Extra Vit D exposure and exercise are also healthy and safe ways to deal with chronic constipation. Sometimes anti inflammatories are necessary and any good pediatric GI should know this.