Katie Wright on the IACC: An Autism Mom Goes to Washington
Posted Oct 28 2009 12:00am
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.
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.
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