SafeMinds Executive Director Testifies at IACC Meeting.
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SafeMinds Executive Director Lisa Wiederlight testified in front of the Interagency Autism Coordinating Committee on April 19, 2016 to express concerns over the validity of the autism prevalence data provided by the U.S. Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network, and to recommend moving responsibility for the prevalence data collection and analysis to the National Center for Health Statistics, which conducts the National Health Interview Survey.
Ms. Wiederlight’s full testimony is below:
My name is Lisa Wiederlight. I am a mother to a 15 year old boy with autism. I am also the executive director of SafeMinds, a national, 501 (c)3 nonprofit organization whose mission is to end the autism epidemic by promoting environmental research and effective treatments for people with autism today.
Five months ago, SafeMinds implored this Committee to convene four work groups that will inform the work of the IACC Strategic Plan. I am told that those work groups, Autism and Wandering; Co-Occurring Conditions with Autism; Environmental Contributors; and Caregiver Support, are likely to be formed shortly. For this I am grateful. Today, SafeMinds asks for the inclusion of and consultation with diverse subject matter experts, including, but not limited to, people with autism who are not able to participate regularly in IACC meetings due to the characteristics and/or severity of their autism, caregivers across the country, environmental health experts, toxicology specialists, gastroenterologists, and public safety professionals.
In addition to having quality input into and feedback on its Strategic Plan, the IACC needs high-quality, dependable, and consistent data upon which to make policy and budget decisions. It does not.
On March 31st of this year, the Centers for Disease Control and Prevention announced that autism prevalence has stayed the same as it was in 2012, at 1 in 68 American children. This defies human observation, and befuddles educational and medical professionals. The data comes from the Autism and Developmental Disabilities Monitoring (ADDM) network, which is coordinated by the CDC’s National Center for Birth Defects and Developmental Disabilities, and led by Dr. Coleen Boyle.
The policy implications of using faulty data on autism prevalence at such a high level of prevalence and urgency cannot be overstated. I will go into more specifics, but the data, as collected, represents an underestimation of autism prevalence, which then results in unfunded mandates for such agencies as the departments of Education, Housing, and Labor, among others.
The ADDM’s goal, according to Dr. Boyle’s 2012 testimony in front of the House Committee on Oversight and Government Reform, is to “provide comparable, population-based estimates of the prevalence rates of autism and related disorders in different sites over time.” In this 2012 testimony, Dr. Boyle herself sites the following reasons for the rise in autism prevalence from 1 in 110 in 2009 to 1 in 88 in a March 2012 report. These reasons, as you will hear, are likely not to have abated since the last prevalence estimate her office provided four years ago. They are, in part, from:
- Improved methods for identification and diagnosis
- Increased public awareness
However, these two factors alone are not responsible for all of the increased prevalence we have seen since the early 1990s.
The most current 1 in 68 figure released less than a month ago in 2016, represents children who were born in 2004, who were diagnosed with autism by age eight, in 2012. This data is therefore four years old. The Strategic Plan will guide the IACC for how many years, and it is based on four year old data? Where is the urgency that this crisis so obviously demands?
Notably, the state with the highest prevalence was New Jersey. New Jersey has kept the most rigorous and consistent case ascertainment practices since its inclusion in the ADDM network. The state continues to see an increase in prevalence—rising 12 percent in two years, from 1 in 45 in the 2010 report, to 1 in 41 in the latest report.
The ADDM report chronically underestimates the rate of autism by including sites that only collect medical records, rather than both medical and educational records. Medical records miss a high percentage of autism cases—17.1 per 1,000 are ascertained using both sources, while only 10.7 per 1,000 using medical records alone.
The variability in case ascertainment methodology among catchment areas also threatens the integrity of the data. This includes how sites access records, how medical records are kept, and the quality of the investigators assigned to a site.
We are equally concerned about the court case which will be held in Utah, brought by former principal investigator for the Utah ADDM site, Dr. Judith Zimmerman. Dr. Zimmerman is alleging that the CDC’s ADDM network allowed research misconduct and persistent data errors in their autism prevalence reports, and that she alerted the CDC to these allegations. This raises significant worry about the integrity of the CDC’s ADDM reports.
Another study, the National Health Interview Study, puts autism prevalence at 1 in 45. This estimate is based on data from 2014, two years later than the ADDM compilation. This research is coordinated by the National Center for Health Statistics, which is run by Charles Rothwell. To quote the National Health Statistics Report from November 13, 2015, “Children diagnosed with developmental disabilities typically require a substantial number of services and treatments to address both behavioral and developmental challenges. Measuring the prevalence of these conditions in children aids in assessing the adequacy of available services and interventions that may improve long-term outcomes.”
Improving long-term outcomes and getting the best return on the taxpayer’s investment is what is really most important. Therefore, SafeMinds suggests moving the ADDM to the National Center for Health Statistics so that the research scientists there can compare and contrast the findings of the National Health Interview Study and the ADDM to ensure that estimate of autism prevalence is the most accurate and strongly-supported estimate available to the decision makers at the IACC and elsewhere in the federal government for appropriate resource allocation and better long term results.