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***Thomas Frazier, Chief Science Officer of Autism Speaks believes 1/59 "significant undercount"

May 7, 2019, Autism estimates for the USA are wildly inaccurate, say experts at INSAR 2019 The Centers for Disease Control and Prevention (CDC) has released new statistics on autism. They estimate that there has been a 15% increase in the prevalence of autism across the USA, from 1 in 68 in 2012 to 1 in 59 in 2014. The findings were based on an analysis of data from 2014 medical and education records for children aged 8 years across 11 monitoring sites. However, the estimates varied widely between states, depending on the degree of access that researchers had to school records. Numbers were significantly higher in areas where researchers had full access, suggesting that the new estimates reflect an underrepresentation of the true prevalence of autism. In New Jersey, for example, where access to education records was better, the figure was as high as 1 in 34, whereas in Arkansas the estimated prevalence was only 1 in 77. Thomas Frazier, Chief Science Officer of Autism Speaks, says this suggests that the new estimate of 1 in 59 is likely to be a significant undercount of autism’s true prevalence in the USA. “Without more and better research, we can’t know how much higher it really is,” he adds. The report is supported by research presented at the International Society for Autism Research (INSAR) annual meeting, which took place between 1-4th May 2019. Research presented at INSAR suggests that autism estimates are wildly inaccurate as they do not involve sufficient data on families from ethnic minority backgrounds. For this study, the researchers conducted the 2016 National Survey of Children’s Health, which asked parents about the health of children within their household. From the data the researchers estimated the prevalence of autism to be 2.5% in 2016, almost 1% higher than the estimates made by the CDC during the same year (1.7%). The study also offered a breakdown by race, which found a 2.8% prevalence among black children and a 2.6% prevalence among white children. However, the estimate for black children was only based on surveys of 80 families and in a 2017 survey, the number of black families surveyed was even smaller… just 38 families where a child in the household had autism…. Autism Speaks is now calling on public health organizations, legislators and the National Institutes of Health to ensure research is conducted that improves understanding of the increased prevalence and the medical needs that frequently accompany autism. The organization suggests that policymakers follow the U.S. Interagency Autism Coordinating Committee’s recommendation to double the funding for autism research…. It’s encouraging to see evidence of improved identification of autism in girls and minority groups. We must continue to narrow this gap while greatly speeding up the time from first concerns about a child’s development to screening, diagnosis and intervention….


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