From The Friendship Circle Blog
By Karen Wang
December 3, 2015
In November, the National Health Interview Survey, an annual survey administered by the U.S. Census Bureau since 1957, published results stating that 1 in 45 American children between the ages 3 and 17 have a form of Autism Spectrum Disorder (ASD).
This new statistic immediately burst across the internet. The previous statistic, published by the Centers for Disease Control in 2014, estimated that 1 in 68 American children have autism. In 1999, autism prevalence was at 1 in 500.
Autism prevalence statistics are generally considered controversial because of the methods for data collection, sample sizes and the changing diagnostic criteria for the condition. The emotional impact on families also comes into play: every time a new autism statistic is made public, reactions are strong.
Here is a summary of insights and reactions around the web:
Perhaps the most vocal group are the people who cite the statistic to draw attention to the need for more autism treatments and research. Lisa Ackerman at Talk About Curing Autism (TACA) wrote, “What does the number have to be for someone outside the autism community to care, activate and drive for answers?”
On Twitter, @HeyShiftHappens wrote, “This should make you mad as hell! #1in45, #HearUs,” and included the graphic below that highlights the sharp rise in autism prevalence since 1975.
At the opposite extreme are those who dismiss the new survey results as a statistical anomaly or over-diagnosis. Parenting.com actually had the headline, “Autism Rate Jumps to 1 in 45 Children, But Don’t Be Alarmed.”
The reasoning behind this approach is that the new numbers came from a re-worded survey that put some emphasis on autism. WebMD.com concluded its analysis by quoting a physician:
“It isn’t clear if autism spectrum disorders are actually increasing, [Dr. Glen] Elliott said. But he added that changing the definition has had some impact. A tendency now exists ‘to use autism spectrum disorders as a label for almost any individual who has social difficulties,’ Elliott said.”
The Issue of Substitution
One reason for the sudden change in the autism prevalence statistic is diagnostic substitution. The survey’s authors wrote, “It is difficult to interpret trends in prevalence over time because of the possibility of ‘diagnostic substitution,’ whereby labeling practices might change and cause similar symptoms to be classified under different disabilities during different time periods.”
According to Nicholette Zeliadt of SpectrumNews.org, the survey’s change in wording “caused a drop in the number of parents who reported that their child has developmental delays, and a rise in the number reporting autism. Yet the total number of children with autism, intellectual disability or other developmental delay did not change. This stable statistic suggests that the uptick in autism stems in part from the reshuffling of children among these diagnostic groups.”
But substitution does not tell the whole story: autism prevalence has been increasing steadily in recent years.
It is also necessary to consider the possibility that the new survey is more precise than the old one. Cari Nierenberg at Huffington Post interviewed scientists who suggest that the new statistic is probably more accurate than past results, “because they produced estimates similar to those of other recent survey methods.”
The Questioning Answers blog points out that the new survey results are strikingly similar to the autism prevalence of 1 in 46 children in Canada, and are probably a better reflection of the North American experience. It also matches New Jersey’s autism prevalence of 1 in 45 children.
Looking to the Future
On Twitter, @SmileyAutistic commented, “I am #1in45 and I matter, listen to us. Nothing about us without us!”
Michael Rosanoff of Autism Speaks viewed the new statistic as a starting point when he said, “We need to better understand not only who has autism, but whether they are receiving the support they need and how we can ensure that they do receive it.”
Regardless of ability or disability, every American child has the legal right to a free and appropriate public education. Since all of the evidence-based treatments for autism are educational methods, school is the primary intervention tool for students with autism. But many school districts are already strained in their special education budgets, and service providers are often stretched thin.
The survey gives an idea of who has autism and how resources should be allocated. The Questioning Answers blog offers an insightful analysis of the data with this conclusion:
“Irrespective of the discussions around what factors might be contributory to reported autism rates (estimated and actual), such findings suggest that quite a bit more planning and resources may need to be put into catering for the needs of this ever-growing population both in childhood and indeed, beyond.”
Autism affects real families who need supports and accommodations today and in the future. Autism is not a number.
Karen Wang is a Friendship Circle parent. She is a contributing author to the anthology "My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities." View all 184 of her posts.