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.

Research presented at INSAR 2019 suggests that autism estimates are wildly inaccurate as they do not involve sufficient data on families from ethnic minority backgrounds.Veja | Shutterstock

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.

‘38 black children with autism are supposed to represent our entire country’

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.

When you look at the numbers, 38 black children with autism are supposed to represent our entire country. This is ridiculous.”

Meredith Pecukonis, Center for Autism Research Excellence, Boston University

President and Chief Executive of Autism Speaks, Angela Geiger, says that whilst progress in autism research has been made on some fronts, there is still a lot more work to do. The findings suggest there needs to be a significant increase in life-enhancing research and access to high-quality services for people with autism across the spectrum and throughout their lifespan.

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.

Autism rates are ‘alarming’ in Qatar

Other research presented at INSAR found that autism affects 1.4% of school-aged children in Qatar, which is above the global average, but below than the average reported for the US. The researchers say their findings represent the first reliable epidemiological study of autism prevalence in Qatar.

Senior scientist at Qatar Biomedical Research Institute, Fouad Alshaban, says previous research had suggested that autism prevalence among children in Qatar was around 5 in 10,000, but that those estimates were based on inaccurate and unreliable survey methods. The results from the new survey serve as a wake-up call to government officials, he says.

This is very alarming to the authorities. They are working very hard to provide the facilities for intervention for that number [of children with autism].”

Rates of diagnosis are improving but progress is slow

One key finding from the CDC report was that the gender gap in autism diagnosis has narrowed. In 2014, boys were four times more likely to be diagnosed than girls, whereas in 2012, boys were 4.5 times more likely to be diagnosed. This suggests improved diagnosis among girls − many of whom do not demonstrate the same symptoms as boys.

The ethnicity gap in diagnosis has also narrowed. Although white children were still more likely to be diagnosed than their ethnic minority peers, the gap has narrowed since 2012, especially between black and white children. This suggests that screening for autism has improved among minority communities, although diagnosis among Hispanic children was still significantly lower than among non-Hispanic children.

One disappointing finding was that there was no overall decrease in age of diagnosis, with most children still only being diagnosed after the age of 4 in 2014. Considering that autism can be reliably diagnosed from as early as 2 years, ensuring an earlier diagnosis is essential because intervention can provide children with the support they need for healthy development and benefit them for a lifetime.

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.

If most children aren’t being diagnosed until after age 4, we’re losing months if not years of intervention that can deliver benefits throughout their lives.”

Thomas Frazier, Autism Speaks

Resources for recognizing early signs of autism and for accessing support services are available at AutismSpeaks. The organization is also encouraging people to access the site, volunteer and donate so that people can come together to make a difference for the millions of people living with autism worldwide.

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