Why Are Autism Rates Steadily Rising?
Stefania Sterling with her son Charlie, who was diagnosed at age 3 with autism.
Stefania Sterling was just 21 when she had her son, Charlie. She was young and healthy, with no genetic issues apparent in either her or her husband's family, so she expected Charlie to be typical.
"It is surprising that the prevalence of a significant disorder like autism has risen so consistently over a relatively brief period."
It wasn't until she went to a Mommy and Me music class when he was one, and she saw all the other one-year-olds walking, that she realized how different her son was. He could barely crawl, didn't speak, and made no eye contact. By the time he was three, he was diagnosed as being on the lower functioning end of the autism spectrum.
She isn't sure why it happened – and researchers, too, are still trying to understand the basis of the complex condition. Studies suggest that genes can act together with influences from the environment to affect development in ways that lead to Autism Spectrum Disorder (ASD). But rates of ASD are rising dramatically, making the need to figure out why it's happening all the more urgent.
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Indeed, the CDC's latest autism report, released last week, which uses 2016 data, found that the prevalence of ASD in four-year-old children was one in 64 children, or 15.6 affected children per 1,000. That's more than the 14.1 rate they found in 2014, for the 11 states included in the study. New Jersey, as in years past, was the highest, with 25.3 per 1,000, compared to Missouri, which had just 8.8 per 1,000.
The rate for eight-year-olds had risen as well. Researchers found the ASD prevalence nationwide was 18.5 per 1,000, or one in 54, about 10 percent higher than the 16.8 rate found in 2014. New Jersey, again, was the highest, at one in 32 kids, compared to Colorado, which had the lowest rate, at one in 76 kids. For New Jersey, that's a 175 percent rise from the baseline number taken in 2000, when the state had just one in 101 kids.
"It is surprising that the prevalence of a significant disorder like autism has risen so consistently over a relatively brief period," said Walter Zahorodny, an associate professor of pediatrics at Rutgers New Jersey Medical School, who was involved in collecting the data.
The study echoed the findings of a surprising 2011 study in South Korea that found 1 in every 38 students had ASD. That was the the first comprehensive study of autism prevalence using a total population sample: A team of investigators from the U.S., South Korea, and Canada looked at 55,000 children ages 7 to 12 living in a community in South Korea and found that 2.64 percent of them had some level of autism.
Searching for Answers
Scientists can't put their finger on why rates are rising. Some say it's better diagnosis. That is, it's not that more people have autism. It's that we're better at detecting it. Others attribute it to changes in the diagnostic criteria. Specifically, the May 2013 update of the Diagnostic and Statistical Manual of Mental Disorders-5 -- the standard classification of mental disorders -- removed the communication deficit from the autism definition, which made more children fall under that category. Cynical observers believe physicians and therapists are handing out the diagnosis more freely to allow access to services available only to children with autism, but that are also effective for other children.
Alycia Halladay, chief science officer for the Autism Science Foundation in New York, said she wishes there were just one answer, but there's not. While she believes the rising ASD numbers are due in part to factors like better diagnosis and a change in the definition, she does not believe that accounts for the entire rise in prevalence. As for the high numbers in New Jersey, she said the state has always had a higher prevalence of autism compared to other states. It is also one of the few states that does a good job at recording cases of autism in its educational records, meaning that children in New Jersey are more likely to be counted compared to kids in other states.
"Not every state is as good as New Jersey," she said. "That accounts for some of the difference compared to elsewhere, but we don't know if it's all of the difference in prevalence, or most of it, or what."
"What we do know is that vaccinations do not cause autism."
There is simply no defined proven reason for these increases, said Scott Badesch, outgoing president and CEO of the Autism Society of America.
"There are suggestions that it is based on better diagnosis, but there are also suggestions that the incidence of autism is in fact increasing due to reasons that have yet been determined," he said, adding, "What we do know is that vaccinations do not cause autism."
Zahorodny, the pediatrics professor, believes something is going on beyond better detection or evolving definitions.
"Changes in awareness and shifts in how children are identified or diagnosed are relevant, but they only take you so far in accounting for an increase of this magnitude," he said. "We don't know what is driving the surge in autism recorded by the ADDM Network and others."
He suggested that the increase in prevalence could be due to non-genetic environmental triggers or risk factors we do not yet know about, citing possibilities including parental age, prematurity, low birth rate, multiplicity, breech presentation, or C-section delivery. It may not be one, but rather several factors combined, he said.
"Increases in ASD prevalence have affected the whole population, so the triggers or risks must be very widely dispersed across all strata," he added.
There are studies that find new risk factors for ASD almost on a daily basis, said Idan Menashe, assistant professor in the Department of Health at Ben-Gurion University of the Negev, the fastest growing research university in Israel.
"There are plenty of studies that find new genetic variants (and new genes)," he said. In addition, various prenatal and perinatal risk factors are associated with a risk of ASD. He cited a study his university conducted last year on the relationship between C-section births and ASD, which found that exposure to general anesthesia may explain the association.
Whatever the cause, health practitioners are seeing the consequences in real time.
"People say rates are higher because of the changes in the diagnostic criteria," said Dr. Roseann Capanna-Hodge, a psychologist in Ridgefield, CT. "And they say it's easier for children to get identified. I say that's not the truth and that I've been doing this for 30 years, and that even 10 years ago, I did not see the level of autism that I do see today."
Sure, we're better at detecting autism, she added, but the detection improvements have largely occurred at the low- to mid- level part of the spectrum. The higher rates of autism are occurring at the more severe end, in her experience.
A Polarizing Theory
Among the more controversial risk factors scientists are exploring is the role environmental toxins may play in the development of autism. Some scientists, doctors and mental health experts suspect that toxins like heavy metals, pesticides, chemicals, or pollution may interrupt the way genes are expressed or the way endocrine systems function, manifesting in symptoms of autism. But others firmly resist such claims, at least until more evidence comes forth. To date, studies have been mixed and many have been more associative than causative.
"Today, scientists are still trying to figure out whether there are other environmental changes that can explain this rise, but studies of this question didn't provide any conclusive answer," said Menashe, who also serves as the scientific director of the National Autism Research Center at BGU.
"It's not everything that makes Charlie. He's just like any other kid."
That inconclusiveness has not dissuaded some doctors from taking the perspective that toxins do play a role. "Autism rates are rising because there is a mismatch between our genes and our environment," said Julia Getzelman, a pediatrician in San Francisco. "The majority of our evolution didn't include the kinds of toxic hits we are experiencing. The planet has changed drastically in just the last 75 years –- it has become more and more polluted with tens of thousands of unregulated chemicals being used by industry that are having effects on our most vulnerable."
She cites BPA, an industrial chemical that has been used since the 1960s to make certain plastics and resins. A large body of research, she says, has shown its impact on human health and the endocrine system. BPA binds to our own hormone receptors, so it may negatively impact the thyroid and brain. A study in 2015 was the first to identify a link between BPA and some children with autism, but the relationship was associative, not causative. Meanwhile, the Food and Drug Administration maintains that BPA is safe at the current levels occurring in food, based on its ongoing review of the available scientific evidence.
Michael Mooney, President of St. Louis-based Delta Genesis, a non-profit organization that treats children struggling with neurodevelopmental delays like autism, suspects a strong role for epigenetics, which refers to changes in how genes are expressed as a result of environmental influences, lifestyle behaviors, age, or disease states.
He believes some children are genetically predisposed to the disorder, and some unknown influence or combination of influences pushes them over the edge, triggering epigenetic changes that result in symptoms of autism.
For Stefania Sterling, it doesn't really matter how or why she had an autistic child. That's only one part of Charlie.
"It's not everything that makes Charlie," she said. "He's just like any other kid. He comes with happy moments. He comes with sad moments. Just like my other three kids."
Announcing Our First Short Story Contest (With Prizes!)
A laptop and notepad waiting for a writer.
Leapsmag is all about high-quality journalism and expert commentary. So you may be wondering, why are we hosting a fiction contest?
The answer is that some of the most visionary ideas for the future of humanity and technology first emerged in fiction, from Jules Verne's prescient novels about space, air, and underwater travels in the 19th century, to Arthur C. Clarke's prediction of satellite communications in 1945, to Isaac Asimov's exploration of robot ethics in the 1950s, to William Gibson's depiction of "cyberspace" in 1982.
But speculative fiction writers don't only anticipate big breakthroughs; they also care about probing the societal, personal, and moral impacts of new technology.
Will the next astute observation come in the form of a short story for leapsmag? Let's find out!
ABOUT THE CONTEST:
The Prompt:
Explore a big moral question or a new opportunity raised by an emerging technology today, in the form of an original, previously unpublished piece of fiction of up to 3000 words.
The Rules:
Submissions must be received by midnight EST on September 15th, 2018. Send your story as a double-spaced attachment in size 12 Times New Roman font to kira@leapsmag.com. Include your name and a short bio. It is free to enter, and authors retain all ownership of their work. Upon submitting an entry, the author agrees to grant leapsmag one-time nonexclusive publication rights.
All submissions will be judged by the Editor-in-Chief on the basis of insightfulness, originality, quality of storytelling, and relevance to the prompt. The Contest is open to anyone around the world of any age, except for the friends and family of leapsmag staff and associates.
The winners will be announced by October 15th, 2018.
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Grand Prize: $500, publication of your story on leapsmag, and promotion on our social media channels.
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Good luck!
Kira Peikoff was the editor-in-chief of Leaps.org from 2017 to 2021. As a journalist, her work has appeared in The New York Times, Newsweek, Nautilus, Popular Mechanics, The New York Academy of Sciences, and other outlets. She is also the author of four suspense novels that explore controversial issues arising from scientific innovation: Living Proof, No Time to Die, Die Again Tomorrow, and Mother Knows Best. Peikoff holds a B.A. in Journalism from New York University and an M.S. in Bioethics from Columbia University. She lives in New Jersey with her husband and two young sons. Follow her on Twitter @KiraPeikoff.
Kim Kardashian's recent Instagram post promoting a morning sickness medication she had never tried.
Where would you turn if you wanted the best advice about trying a new drug? A doctor with years of specialized training? A website with opinions from leading experts in the field? Maybe a review article by a trustworthy medical reporter. Or, maybe even go right to the source — an article about the drug in the peer-reviewed medical literature.
Or you could choose to get advice from someone whose education ended with high school and who almost certainly has had no training in pharmacology or scientific methodology. In America the answer is, sadly, the high school graduate if he or she is a huge celebrity.
Kardashian appears to have blessed a drug she never used and had no basis to endorse.
Drug manufacturers know this. They turn to celebrities, no matter how ignorant, ill-informed, money grubbing or air-headed, to pitch their goods directly to you on TV and the internet.
The latest example of this reliance on the utterly unqualified is the use of the surgically reengineered, reality show TV star Kim Kardashian to endorse a pill for women suffering from morning sickness during pregnancy. Kim, whose science training, whatever it was, ended when she graduated California's Marymount high school, recently offered this assessment of the medication:
"You know how sick I was while pregnant; I could barely get out of bed. That was before I found a safe & effective med to treat my morning sickness when diet & lifestyle changes didn't help. I hear there's a new formulation of the drug combination I took that's made to work faster & longer. If you're pregnant & feeling sick & changing your diet & lifestyle doesn't work, ask your doctor about Bonjesta® (doxylamine succinate/pyridoxine HCl). Most common side effect is drowsiness. Bonjesta.com for info."
She appears to have blessed a drug she never used and had no basis to endorse. And whether she got all the possible important side effects out there is not clear. In 2015, her internet post lauding another morning sickness drug, Diclegis, made by the same company, Duchesnay, now pushing Bonjesta, earned her $500,000 and Duchesnay a warning letter from the FDA for false and misleading advertising. Duchesnay dealt with the FDA and went on its merry way coming up with new meds relying on confirmation of their value by Kim.
Artificial demand creates more expense downstream for insurers, payer programs, and patients.
It seems pretty likely she was handsomely paid for her kind words about Bonjesta--payment that, if it occurred, is not disclosed in her endorsement or in most commercials in which celebrities tout drugs, vaccines and devices.
Legislators and patients often wonder why the cost of drugs in America is so high relative to the rest of the world. Well, one reason is the rest of the world does not tolerate direct-to-consumer ads aimed at ginning up demand when touted by actors, soap opera stars, sports stars, reality tv icons, quiz show hosts and others selling their fame so you will use a company's drug. Increasing the demand through celebrity endorsement allows companies to jack up their prices. Duchesnay did just that! Artificial demand creates more expense downstream for insurers, payer programs, and patients.
We treat marketing drugs on a par with marketing cosmetics, dishwashers, and fast food. And we get what Kim and other media celebs are paid for: useless information from unqualified sources who can grab eyeballs and get you to pester your doctor about what your idols say works.