Autism Speaks recently organized and sponsored an exceptional symposium for pediatric GIs on autism and GI disorders. It was a great day for our kids and there were many highlights I would like to share.
Drs. Ashwood, Murch and Buie were all excellent. Ashwood did a beautiful job explaining how intricately the immune system is related to these GI disorders. Buie gave a moving lecture and was, sadly, the only doctor to actually include photos of children actually suffering from GI disease. Murch is one of the original authors of the Wakefield 1998 paper for the “Lancet.” Piece by piece he separated out the histrionic accusations from the paper’s actual findings and conclusions. He discussed how shocked he and his colleagues were over 10 years ago to find so many autistic children seeking their help for GI disease. They were even more shocked to discover the inflammation and disease revealed in the colonoscopies.
Murch spoke about the stifled progress in this field being the result of the political backlash as many scientists left ASD/GI research in favor of safer, less career damaging pursuits. Meanwhile GI disease amongst ASD kids is worse than ever. Doctors treating this problem are so difficult to find and bad advice remains rampant throughout mainstream medicine. All too often doctors view GI disease behaviorally, fail to take a proper history regarding the onset of the symptoms and give unhelpful suggestions.
The conference began with some AAP speakers, none of whom were very insightful. They used those words and phrases we have come to know all too well: “mystery”, “no one knows”, “unclear, “Eric Fombonne.” You get the picture. No sense of the pain that surrounds this issue or compassion for these kids. When one doctor showed a Fombonne “GI” study, I jumped to the mike. I had to ask the doctor why he would choose to present the work of a Canadian psychiatrist, and vaccine company board member, as some kind of exalted expert on GI disease and autism? Should we be also be looking at GI studies by Ears, Nose and Throat doctors or OBGYNs? At no time did this doctor reveal Fombonne’s conflict of interest as someone who is regularly paid to testify against these ASD/ GI children in court. I felt it would be wrong of me not to point this out, so I did. The AAP needs to stop presenting such sloppy conflict riddled research. It is embarrassing.
Despite this community’s great frustration with the pediatric establishment, I have to say how pleased I was to meet many of wonderful GIs in attendance. There were over 150 GIs. Given the ignorance surrounding this issue there should have been 5,000 GIs at the conference but one step at a time
During the conferences attendees learned a lot about the trajectory of my son’s GI disease (sorry but I was one of the few parents in attendance) and numerous doctors had questions for me afterwards. In the restroom a doctor approached me in tears. She told me that she was ashamed that her practice does not treat these children. She and her partners have no idea how to help and dread appointments with autistic kids. Other doctors complained to me that the general feeling is that these kids are impossible to deal with and difficult to diagnose. They desperately need help, education and guidance to serve these patients. Many asked me to recommend books and other conferences. I was more than happy to do this but it seemed like an inefficient way to spread information.
I had repeatedly asked the conference organizer, Dr. Dan Coury, head of AS’ Autism TREATMENT Network, to invite Dr, Julie Matthews to be a presenter on dietary inventions and GI disease. She is a published author and professional nutritionist for ASD children, specializing in this sub population of children. I mean we can describe these symptoms all day long but until we give doctors tools to help these children how will their outcomes change? Dr. Coury declined to invite Matthews. It was a lost opportunity to provide concrete help for our kids and give the GIs the information they need.
Dr. Harland Winter and Dr. Lonnie Zelter gave uninspiring talks. The one time Dr. Zelter spoke of parent reports it was in a “parent reports are not always reliable context.” I am still waiting to see the study on how reliable physician reports are in context to gauging GI disease. I know where I would place my bets. Zelter spoke mainly about high functioning children and did little to link the subject usefully to the specifics of the GI/ASD disease population. Dr. Winter also presented no pictures of kids and few compelling specifics regarding the causes and treatments surrounding this disease. Both doctors have an open invitation to my home to view this disease in action, maybe then they can retire the words “mystery”, “no one knows”…in the context of autism and GI disease.
Dr. Coury’s choice to have Dr. Fasano and Dr. James speak redeemed the slow middle part of the conference. They were amazing! I wish AS got these talks on video and parents and doctors could stream it from the AS website. Absolutely fantastic speakers. Fasano spoke at length about the need for doctors to change the paradigm of GI disease and ASD kids. We need to stop looking for the textbook signs of Crohn’s and learn about how the GI disease affecting ASD kids presents itself in a scope. The pattern was there in Fasano’s slides but the GIs have been missing it. Like Dr. Buie, Fasano exhorted the audience to listen more closely to parents and work harder and be more open minded when treating this disease. Dr. Fasano even spoke about how dairy exacerbates symptoms! Incredibly, Fasano and James were also the only speakers to speak about vaccines as a possible trigger. They both talked about the completely unknown effects of toxic adjuvants on the central nervous system.
Dr. James was riveting to watch. She took apart complex scientific processes section by section showing how the immune system and the GI system could be damaged by environmental insults. It was a shame she was the last presenter and had the smallest audience.
Autism Speaks took big risks with these truly innovative speakers, and guess what, the GIs are ready to hear what they had to say! The only thing many of them seemed to be frightened of is continuing down the same futile treatment path. The majority of the attendees really want to help our kids but need education and training. It was a great conference, one I wish would be held bi-annually in every city in the U.S.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.