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.
The next SEED presentation was on facial dysmorphology. I’m serious! Yes, just the subject all our families want studied! There could not be a more useless more foolish waste of resources. SEED is supposed to be about researching biological and environmental origins of autism. Since when does dysmorphology have anything to do with autism? Shapira presented a tedious and irrelevant lecture about people with various severe chromosomal abnormalities and facial dysmorphia. It amazed me that even after the abject failure of hundreds of millions of ASD research dollars in FragileX, Retts and Tuberous Sclerosis models of autism, that the CDC keeps moving straight into this dead-end. Thurman (from the NIH!), McDuffies, Abbeduto, Roberts and many more, have done numerous studies demonstrating that these chromosomal conditions are very different from non syndromic autism and do NOT yield valuable science. Most of these children receive an ASD diagnosis if the parents request one, yet few fit DSM parameters of autism.
It appalls me that Dr. Shapira (a geneticist) feels entitled to take precious autism research dollars and spend this money on a banal pet interest rather thaninvest that money towards urgent scientific priorities. It’s so disrespectful to people with autism, our families and the tax payer. Shapira’s research adds nothing, helps no one. The life expectancy for people with autism is about 55, 50% of ASD people suffer from seizures, 25% of ASD people engage in severe self injurious behavior. But what is Dr. Shapira’s research priority for autism? Facial dysmorphia! Shapira needs to be fired.
Finally, Dr. Dani Fallin presented SEED research on fevers during pregnancy. 60% of all pregnant women experience a fever while pregnant. About 1% of that group have a child with autism. No pregnant women wants a fever, no pregnant tries to contract a fever, so right away this study is of no actionable value. Fallin states the risk of autism among pregnant women with fevers is verysmall and only apparent in second trimester. Of course it is! The prenatal fever is the small part of a dynamic process! It only sets the stage for the real damage, which occurs postnatally.
How could Fallin fail to connect prenatal fevers with the infants and toddlers who suffer from chronic infections and illnesses and then regress into autism? There is SO much great literature on this. These infants are at the highest risk for regressive autism. What happens after infants are given the standard 5 to 7 vaccines at their 2nd, 4th, 6th and 12-month appointments? Fevers! Virtually all these at-risk babies experience high fevers and have the highest rate of post vaccination febrile seizures. They should never be given Tylenol (which depletes glutathione) and they should receive a slower and more spread out vaccine schedule. There is a treasure trove of actionable science regarding postnatal fevers and autism. Why does SEED only study the least important part?
Thanks to community representative John Elder Robison for pointing that people affected by autism desperately need actionable science. He spoke about need for science to help prevent disabling aspects of autism or science that fosters treatment.
Nothing the SEED presented offers any value to our families or the taxpayer. Pregnant women already know not to acquire fevers and everyone in the field know that GI disorders occur at a very high rate among ASD people. Giving the ASD public this information is not a $10 million + value.
SEED should be shut down. The leadership of SEED should be fired. SEED’s budget should be directed toward research on POSTnatal environmental triggers, with an eye towards preventing regressive autism.
Katie Wright is a Contributing Editor to Age of Autism.