Managing Editor's Note: Katie Wright has written extensively on the Interagency Autism Coordinating Committee. You can read her posts HERE..
By Katie Wright
You know how watching something on TV is never quite the same as the real thing? I’ve been listening to IACC meetings for 2 years and wanted to see this committee in action. My Mom and I also wanted to attend IACC in order to support the five families affected by autism who would be addressing the committee. Very rarely does IACC hear from parents of severely autistic children.
Dr. Insel started off the meeting apologizing to Lyn Redwood for Dr. Landis’ note. The apology was overdue and should also have been coming from Story Landis, but Redwood graciously accepted. The room was absolutely packed with autism families. My Mom and I were in awe of their abilities to get through the onerous NIH security check points and be at the meeting on time. Meanwhile at least 4 IACC committee members were absent. It seems to me that if a parent traveling alone with a severely autistic child can get to this meeting on time, so should IACC members. Even Insel pointedly remarked to the group that many, many people would like to sit on this committee and all members need to make a better effort to be present and on time.
As if on cue, federal members Dr. Jennifer Johnson and Dr. Lark Huang strolled in 45 minutes late holding coffee and snacks. Apparently, they were in no hurry.
Then, at long last, parents told the story of their child’s descent into autism. Elizabeth Emken was there with her handsome 17 yr old son, Alex. Elizabeth spoke about how loved Alex is and how grateful their family is for Alex’s good health and general happiness. However, Alex is severely disabled. He cannot communicate with more than a few words at a time, he cannot live independently, he will not get married or have a family and Elizabeth, like all of us, worries about what will happen when she is gone.
Judy Chinitz spoke bravely about her son, also Alex, and his nightmarish descent into regressive autism and concurrent onset of severe bowel disease. Judy spoke about spending years caring for her son as he endured a decade of bloody diarrhea, extreme pain, chronic illness and the inability to sleep. Alex was taken from doctor to doctor; no pediatric GI knew how to help Alex and most dismissed him as “just autistic.” Out of desperation Judy enrolled in a graduate school nutrition course after reading Elaine Gottschall’s “Breaking the Vicious Cycle.” By the time Alex was eleven his health stabilized as a result of the SCD diet, but sadly Alex remained profoundly autistic. Moms like Judy wonder how different their children might be had they had the benefit of the sound medical intervention their children desperately needed.
This was the very first time in 2 years that IACC committee members, largely non autism experts and non parents heard from a parent of an autistic child with gut disease. Judy’s story was truly wrenching. Alex’s journey was so much difficult than even my son’s. The reaction of the committee was silence and apparent discomfort.
After the end of parent presentations not one committee member had a question for Judy, not one. Dr. Yvette Janvier of Toms’ River, NJ, has insisted that GI issues do not exist among ASD kids and she was “offended” by Lyn Redwood’s assertions that these children have not been receiving adequate medical help. Well here was Dr. Janvier’s big opportunity to learn about kids like Alex, ask his Mom some questions and exhibit some compassion and humility. But no, Dr. Janvier sat there like a stone.
During the break, at least Tom Insel approached Judy to thank her for coming, but not one other member of the committee spoke with Judy or Alex. That is the whole IACC committee in a nutshell: most are not parents, most are not autism experts, largely uninvested in our children and do not want to learn from our families. They want ugliness of autism to just go away. I want that too, but wishing doesn’t make it so.
These courageous Moms had spoken about so many issues IACC never discusses, subjects that are of grave importance to so many families. It was the perfect opportunity to delve into a discussion of co-morbid issues like GI disease, autoimmune dysfunction, adverse vaccine reactions, dietary interventions, seizure disorders, etc. But no, guess what? The next hour and a half presentation was about ABA! IACC had engaged an ABA expert to basically explain this methodology to the committee. I know! The ONE autism topic that doesn’t need IACC’s attention. IACC is charged with causation research. How about spending an hour and a half on the cause of GI disease, seizures, regressions, or adverse vaccine reactions? ABA is already widely accepted, is extensively utilized and exhaustively well researched. If committee members do not know what ABA is; a) that is really embarrassing and b) they should educate themselves about autism basics on their own time and not waste ours. Imagine a cutting edge dermatology conference on skin cancer presenting a panel on sunscreen: good or bad?
Maybe it because of the dry academic tone of this ABA lecture, but the committee really came alive during this presentation. There was question after question! Clearly it was the first time many of the committee members were learning about ABA. After 2 long years, this committee of autism experts is just now learning about ABA? So disappointing and distressing. IACC is no Manhattan Project, that’s for sure.
Where is the discussion on cutting edge science? During the public comment period it took a mom to speak about the new development regarding chronic fatigue syndrome and the recent finding that nearly all CF patients are infected with the same virus. For decades chronic fatigue had been incorrectly classified as a psychiatric disorder and now we know it has a true biological basis. The implications for treatment are exciting and unprecedented. This discovery opens a whole new window into disorders like autism, in which a substantial % of individuals with ASD suffer from acute autoimmune dysfunctions and chronic illnesses.
When I couldn’t listen to the ABA lecture another minute I went into the hallway to call home. I suddenly realized how thirsty I was and reached for a bottled water on a snack table. Just as I untwisted the cap I saw the sign, “FOOD AND BEVERAGES FOR COMMITTEE MEMBERS ONLY.” I instantly felt terribly guilty and debated whether or not to put the water back. I had already opened the bottle, what should I do…But then I thought- wait, this is insane! “food and beverages for committee members only?” Who the hell is paying for all of this anyway? Not the committee, but you, me and every American taxpayer. Does anything say, “Welcome Public!” like a sign basically telling families don’t eat our food and don’t drink our water? Classic IACC.
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.