Katie Wright: The Disconnect Between Autism Research at NIH and Parents' Requests
Posted Dec 18 2009 12:00am
By Katie Wright
Autism Families Speak to the NIH Part I
For over 2 years many of us have had to listen to the myopic and inert prevarications of the members of the Interagency Autism Coordinating Committee (IACC) as they discuss autism research. It has taken them over 2 YEARS to develop a strategic plan. In the time they have spent talking autism rates have increased from 1 in 166 American children to 1 in 91. Last week the director the committee, Dr. Tom Insel, infamous for his sudden and unethical removal of pre-approved vaccine studies, urged the committee to “Be bold. This is your chance!” Insel is clearly feeling the heat to accomplish something, anything, other than merely engendering more anger and antipathy from the autism community. In response to Insel’s urge for bold action committee members like Dr. Linda Birbaum (NIEHS), Dr. Ed Trevathan (CDC) and Dr. Jennifer Johnson (ACF) spent the next 30 minutes arguing about minutiae, like whether or not to write “Ethnic and racial minorities” or just “ethnic minorities.” Another parent listening in e-mailed me saying she wanted to “gauge her eyes out.” I replied, “me first.”
A few months ago, IACC asked the autism community for feedback regarding their Strategic Plan. The process for providing feedback was onerous and time consuming. There were about 50 questions. Still over 500 people, mainly very busy parents, took the time to complete the questionnaire. It took me almost an hour. The responses are incredibly thoughtful, intelligent and prescient. Unfortunately, public input carries no weight at all within IACC and I doubt if most members read the feedback. Only Lyn Redwood ever refers to the public’s queries or suggestions. The rest of the committee displays no interest in feedback that dramatically diverges from their largely academic and genetic paradigm of autism. Considering that almost none of the federal members actually have ASD kids, treat them or research the subject, I suppose that isn’t surprising- only sad.
In the draft of their strategic plan IACC highlights the following research prorities:
Eye gazing research Face training computer programs Parents with psychiatric disorders Why early intervention is good Brain scanning Tuberous Sclerosis research More genome and genetic research
Compare the above list of torpid, sluggish and mainly academic priorities to the kind of research autism families said they would like to see IACC fund:
“Research biomedical interventions.” That occurred about 50x
“I feel ABA is limited and a new generation of treatments can have a global effect on ASD kids’ quality of life and is ignored.”
“Diet needs to be addressed. It is non-invasive, healthy and doable.”
“Investigate the effects of (commonly prescribed ASD drugs) on developing brains.”
Autism Families Speak to the NIH Part I
For over 2 years many of us have had to listen to the myopic and inert prevarications of the members of the Interagency Autism Coordinating Committee (IACC) as they discuss autism research. It has taken them over 2 YEARS to develop a strategic plan. In the time they have spent talking autism rates have increased from 1 in 166 American children to 1 in 91. Last week the director the committee, Dr. Tom Insel, infamous for his sudden and unethical removal of pre-approved vaccine studies, urged the committee to “Be bold. This is your chance!” Insel is clearly feeling the heat to accomplish something, anything, other than merely engendering more anger and antipathy from the autism community. In response to Insel’s urge for bold action committee members like Dr. Linda Birbaum (NIEHS), Dr. Ed Trevathan (CDC) and Dr. Jennifer Johnson (ACF) spent the next 30 minutes arguing about minutiae, like whether or not to write “Ethnic and racial minorities” or just “ethnic minorities.” Another parent listening in e-mailed me saying she wanted to “gauge her eyes out.” I replied, “me first.”
A few months ago, IACC asked the autism community for feedback regarding their Strategic Plan. The process for providing feedback was onerous and time consuming. There were about 50 questions. Still over 500 people, mainly very busy parents, took the time to complete the questionnaire. It took me almost an hour. The responses are incredibly thoughtful, intelligent and prescient. Unfortunately, public input carries no weight at all within IACC and I doubt if most members read the feedback. Only Lyn Redwood ever refers to the public’s queries or suggestions. The rest of the committee displays no interest in feedback that dramatically diverges from their largely academic and genetic paradigm of autism. Considering that almost none of the federal members actually have ASD kids, treat them or research the subject, I suppose that isn’t surprising- only sad.
In the draft of their strategic plan IACC highlights the following research prorities:
Eye gazing research
Face training computer programs
Parents with psychiatric disorders
Why early intervention is good
Brain scanning
Tuberous Sclerosis research
More genome and genetic research
Compare the above list of torpid, sluggish and mainly academic priorities to the kind of research autism families said they would like to see IACC fund:
“Research biomedical interventions.” That occurred about 50x
“I feel ABA is limited and a new generation of treatments can have a global effect on ASD kids’ quality of life and is ignored.”
“Diet needs to be addressed. It is non-invasive, healthy and doable.”
“Investigate the effects of (commonly prescribed ASD drugs) on developing brains.”
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