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."
Michio Kaku Talks Life on Mars, Genetic Engineering, and Immortality
Dr. Michio Kaku
Today is the release of THE FUTURE OF HUMANITY, the latest book by the world-renowned physicist Dr. Michio Kaku. In it, he explores the astonishing technologies that could propel us to live on other planets and even to live forever. LeapsMag Editor-in-Chief Kira Peikoff recently chatted with Dr. Kaku about some of the ethical implications we need to consider as we hurtle toward our destiny among the stars. Our interview has been edited and condensed for clarity.
"Technology is like a double-edged sword. The question is, who wields it?"
A big part of your book discusses living on Mars, and you mention that nanotech, biotech and AI could help us do so in the next 100 years. But you also note that efforts to make the Red Planet habitable could backfire, such as using genetic engineering to produce an ideal fertilizer, which could make one life form push out all the others. How should we judge when a powerful new technology is ready to be tested?
Technology is like a double-edged sword. One side can cut against ignorance, poverty, disease. But the other side can cut against people. The question is, who wields the sword? It has to be wielded by people's interests. We have to look not at the needs of the military or corporations, but society as a whole, and we have to realize that every technology, not just the ones I mentioned in the book, has a dark side as well as a positive side.
On the positive side, you could terraform Mars using genetic engineering to create algae, plants that could thrive in the Martian atmosphere, and a self-sustaining agriculture where we could raise food crops. However, it has to be done carefully, because we don't want to have it overrun Mars, just like we have certain plants that overrun the natural environment here on Earth. So we have to do it slowly. It cannot be done all of a sudden in a crash program. We have to see what happens if we begin to terraform stretches of Martian landscape.
Elon Musk of SpaceX, who has pioneered much of these technologies, has stated that we can jumpstart terraforming Mars by detonating hydrogen bombs over the polar ice caps. Later he had to qualify that by saying that they are airbursts, not ground bursts, to minimize radiation. Other people have said, we don't know what a nuclear weapon would do. Would it destabilize Mars? Would it open cracks in the ice caps? So we have to think things through, not just make proposals. Another proposal is to use silver mirrors in space to reflect sunlight down to melt the ice caps, and that would be more environmentally friendly than using hydrogen bombs.
"Our grandkids, when they hit the age of 30, they may just decide to stop aging, and live at age 30 for many decades to come."
As far as colonizing Mars, you also talk about technologies that could potentially help us end aging, but you note that this could exacerbate overpopulation and an exodus from Earth -- the double-edged sword again. What's your personal view on whether anti-aging research should be pursued?
Anti-aging research is accelerating because of the human genome. We're now able to map the genomes of old people, compare them with the genomes of young people, and we can see where aging takes place. For example, in a car, aging takes place in the engine, because that's where we have moving parts and combustion. Where do we find that in a cell? The mitochondria, and so we do see a concentration of error build-up in the mitochondria, and we can envision one day repairing the mistakes, which could in turn increase our life span. Also we're discovering new enzymes like telomerase which allow us to stop the clock. So it's conceivable, I think not for my generation, but for the coming generations, perhaps our grandkids, when they hit the age of 30, they may just decide to stop aging, and live at age 30 for many decades to come.
The other byproduct of this of course is overpopulation. That's a social problem, but realize in places like Japan, we have the opposite problem, under-population, because the birth rate has fallen way below the replacement level, people live too long, and there's very little immigration there. Europe is next. So we have this bizarre situation where some places like Sub-Saharan Africa are still expanding, but other places we're going to see a contraction. Overall, the population will continue to rise, but it's going to slow down. Instead of this exponential curve that many people see in the media, it's going to be shaped like an "S" that rises rapidly and then seals off. The UN is now beginning to entertain the possibility that the population of the Earth may seal off sometime by the end of the century--that we'll hit a steady state.
"In the future, that composite image may be holographic, with all your videotapes, your memories, to create a near approximation of who you are, and centuries from now, you may have digital immortality."
Later in the book, you talk about achieving immortality through storing your digital consciousness, uploading your brain to a computer. Many people today find that notion bizarre or even repulsive, but you also wisely note that "what seems unethical or even immoral today might be ordinary or mundane in the future." What do you think is the key to bridging the gap between controversial breakthroughs and public acceptance?
I imagine that if someone from the Middle Ages, who is fresh from burning witches and heretics and torturing non-believers, were to wind up today in our society, they might go crazy. They might think all of society is a product of the Devil, because attitudes toward morality change. So we humans today cannot dictate what morality will be like 100 years from now. For example, test tube babies. When Louise Brown (the first test tube baby) was first born, the Catholic Church denounced it. Now, today, your wife, husband, you may be a test tube baby and we don't even blink.
There's a Silicon Valley company today that will take what is known about you on the Internet, your credit card transactions, your emails, and create a composite image of you. In the future, that composite image may be holographic, with all your videotapes, your memories, to create a near approximation of who you are, and centuries from now, you may have digital immortality—your memories, your sensations, will be recorded accurately, and an avatar will recreate it. Like for example, I wouldn't mind talking to Einstein. I wouldn't mind sitting down with the guy and having a great conversation about the universe.
And the Connectome Project, by the end of the century, will map the entire brain--that's every neuron--just like the genome project has mapped every gene. And we live with it, we don't even think twice about the fact that our genome exists. In the future, our connectome will also exist. And the connectome can reproduce your thoughts, your dreams, your sensations. We'll just live with that fact; it will be considered ordinary.
"A hundred years from now, we may want to merge with some of these technologies, rather than have to compete with robots."
Wow. In such a "post-human" era, our bodies could be replaced by robots or maintained by genetic engineering. Once these technologies become commercially available, do you think people should have the freedom to make changes or enhancements to themselves?
I think there should be laws passed at a certain point to prevent parents from going crazy trying to genetically engineer their child. Once we isolate the genes for studying, for good behavior, things like that, we may be tempted to tinker with it. I think a certain amount of tinkering is fine, but we don't want to let it get out of control. There has to be limits.
Also, we are in competition with robots of the future. A hundred years from now, robots are going to become very intelligent. Some people think they're going to take over. My attitude is that a hundred years from now, we may want to merge with some of these technologies, rather than have to compete with robots. But we're not going to look like some freaky robot because we're genetically hardwired to look good to the opposite sex, to look good to our peers. Hundreds of thousands of years ago, and hundreds of thousands of years into the future, we'll still look the same. We'll genetically modify ourselves a little bit, but we'll basically look the same.
That's an interesting point. It's amazing how fast technology is moving overall. Like at one point in the book, you mention that primates had never been cloned, but a few weeks ago, news broke that this just happened in China. Do you think we should slow down the dramatic pace of acceleration and focus on the ethical considerations, or should we still move full-steam ahead?
Well, CRISPR technology has accelerated us more than we previously thought. In the past, to tinker with genes, you had to cut and splice, and it was a lot of guesswork and trial and error. Now, you can zero in on the cutting process and streamline it, so cutting and splicing genes becomes much more accurate, and you can edit them just like you edit a book. Within the field of bioengineering, they have set up their own conferences to begin to police themselves into figuring out which domains are ethically dangerous and which areas can provide benefits for humanity, because they realize that this technology can go a little bit too fast.
"Where does truth come from? Truth comes from interaction with incorrect ideas."
You cannot recall a life form. Once a life form is created, it reproduces. That's what life does. If it reproduces outside the laboratory, it could take over. So we want to make sure that we don't have to recall a life form, like you would recall a Ford or a Chevrolet. Eventually governments may have to slow down the pace because it's moving very rapidly.
Lastly, you talk about the importance of democratic debate to resolve how controversial technology should be used. How can science-minded people bring the rest of society into these conversations, so that as much of society as possible is represented?
It's a question of where does truth come from? Truth comes from interaction with incorrect ideas--the collision of truth and untruth, rumors and fact. It doesn't come from a machine where you put in a quarter, and out comes the answer. It requires democratic debate. And that's where the Internet comes in, that's where the media comes in, that's where this interview comes in. You want to stimulate and educate the people so they know the dangers and promises of technology, and then engage with them about the moral implications, because these things are going to affect every aspect of our life in the future.
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.
Society Needs Regulations to Prevent Research Abuses
A tension exists between scientists/doctors and government regulators.
[Editor's Note: Our Big Moral Question this month is, "Do government regulations help or hurt the goal of responsible and timely scientific innovation?"]
Government regulations help more than hurt the goal of responsible and timely scientific innovation. Opponents might argue that without regulations, researchers would be free to do whatever they want. But without ethics and regulations, scientists have performed horrific experiments. In Nazi concentration camps, for instance, doctors forced prisoners to stay in the snow to see how long it took for these inmates to freeze to death. These researchers also removed prisoner's limbs in order to try to develop innovations to reconnect these body parts, but all the experiments failed.
Researchers in not only industry, but also academia have violated research participants' rights.
Due to these atrocities, after the war, the Nuremberg Tribunal established the first ethical guidelines for research, mandating that all study participants provide informed consent. Yet many researchers, including those in leading U.S. academic institutions and government agencies, failed to follow these dictates. The U.S. government, for instance, secretly infected Guatemalan men with syphilis in order to study the disease and experimented on soldiers, exposing them without consent to biological and chemical warfare agents. In the 1960s, researchers at New York's Willowbrook State School purposefully fed intellectually disabled children infected stool extracts with hepatitis to study the disease. In 1966, in the New England Journal of Medicine, Henry Beecher, a Harvard anesthesiologist, described 22 cases of unethical research published in the nation's leading medical journals, but were mostly conducted without informed consent, and at times harmed participants without offering them any benefit.
Despite heightened awareness and enhanced guidelines, abuses continued. Until a 1974 journalistic exposé, the U.S. government continued to fund the now-notorious Tuskegee syphilis study of infected poor African-American men in rural Alabama, refusing to offer these men penicillin when it became available as effective treatment for the disease.
In response, in 1974 Congress passed the National Research Act, establishing research ethics committees or Institutional Review Boards (IRBs), to guide scientists, allowing them to innovate while protecting study participants' rights. Routinely, IRBs now detect and prevent unethical studies from starting.
Still, even with these regulations, researchers have at times conducted unethical investigations. In 1999 at the Los Angeles Veterans Affairs Hospital, for example, a patient twice refused to participate in a study that would prolong his surgery. The researcher nonetheless proceeded to experiment on him anyway, using an electrical probe in the patient's heart to collect data.
Part of the problem and consequent need for regulations is that researchers have conflicts of interest and often do not recognize ethical challenges their research may pose.
Pharmaceutical company scandals, involving Avandia, and Neurontin and other drugs, raise added concerns. In marketing Vioxx, OxyContin, and tobacco, corporations have hidden findings that might undercut sales.
Regulations become increasingly critical as drug companies and the NIH conduct increasing amounts of research in the developing world. In 1996, Pfizer conducted a study of bacterial meningitis in Nigeria in which 11 children died. The families thus sued. Pfizer produced a Nigerian IRB approval letter, but the letter turned out to have been forged. No Nigerian IRB had ever approved the study. Fourteen years later, Wikileaks revealed that Pfizer had hired detectives to find evidence of corruption against the Nigerian Attorney General, to compel him to drop the lawsuit.
Researchers in not only industry, but also academia have violated research participants' rights. Arizona State University scientists wanted to investigate the genes of a Native American group, the Havasupai, who were concerned about their high rates of diabetes. The investigators also wanted to study the group's rates of schizophrenia, but feared that the tribe would oppose the study, given the stigma. Hence, these researchers decided to mislead the tribe, stating that the study was only about diabetes. The university's research ethics committee knew the scientists' plan to study schizophrenia, but approved the study, including the consent form, which did not mention any psychiatric diagnoses. The Havasupai gave blood samples, but later learned that the researchers published articles about the tribe's schizophrenia and alcoholism, and genetic origins in Asia (while the Havasupai believed they originated in the Grand Canyon, where they now lived, and which they thus argued they owned). A 2010 legal settlement required that the university return the blood samples to the tribe, which then destroyed them. Had the researchers instead worked with the tribe more respectfully, they could have advanced science in many ways.
Part of the problem and consequent need for regulations is that researchers have conflicts of interest and often do not recognize ethical challenges their research may pose.
Such violations threaten to lower public trust in science, particularly among vulnerable groups that have historically been systemically mistreated, diminishing public and government support for research and for the National Institutes of Health, National Science Foundation and Centers for Disease Control, all of which conduct large numbers of studies.
Research that has failed to follow ethics has in fact impeded innovation.
In popular culture, myths of immoral science and technology--from Frankenstein to Big Brother and Dr. Strangelove--loom.
Admittedly, regulations involve inherent tradeoffs. Following certain rules can take time and effort. Certain regulations may in fact limit research that might potentially advance knowledge, but be grossly unethical. For instance, if our society's sole goal was to have scientists innovate as much as possible, we might let them stick needles into healthy people's brains to remove cells in return for cash that many vulnerable poor people might find desirable. But these studies would clearly pose major ethical problems.
Research that has failed to follow ethics has in fact impeded innovation. In 1999, the death of a young man, Jesse Gelsinger, in a gene therapy experiment in which the investigator was subsequently found to have major conflicts of interest, delayed innovations in the field of gene therapy research for years.
Without regulations, companies might market products that prove dangerous, leading to massive lawsuits that could also ultimately stifle further innovation within an industry.
The key question is not whether regulations help or hurt science alone, but whether they help or hurt science that is both "responsible and innovative."
We don't want "over-regulation." Rather, the right amount of regulations is needed – neither too much nor too little. Hence, policy makers in this area have developed regulations in fair and transparent ways and have also been working to reduce the burden on researchers – for instance, by allowing single IRBs to review multi-site studies, rather than having multiple IRBs do so, which can create obstacles.
In sum, society requires a proper balance of regulations to ensure ethical research, avoid abuses, and ultimately aid us all by promoting responsible innovation.
[Ed. Note: Check out the opposite viewpoint here, and follow LeapsMag on social media to share your perspective.]