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.
The Latest News
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."
“Disinfection Tunnels” Are Popping Up Around the World, Fueled By Misinformation and Fear
A screenshot of a video published by The Guardian of a tunnel used in a Mexican border town to "disinfect" U.S. visitors in an attempt to prevent them from spreading the coronavirus.
In an incident that sparked widespread outrage across India in late March, officials in the north Indian state of Uttar Pradesh sprayed hundreds of migrant workers, including women and children, with a chemical solution to sanitize them, in a misguided attempt to contain the spread of the novel coronavirus.
Since COVID-19 is a respiratory disorder, disinfecting a person's body or clothes cannot protect them from contracting the novel coronavirus, or help in containing the pathogen's spread.
Health officials reportedly doused the group with a diluted mixture of sodium hypochlorite – a bleaching agent harmful to humans, which led to complaints of skin rashes and eye irritation. The opposition termed the instance 'inhuman', compelling the state government to order an investigation into the mass 'chemical bath.'
"I don't think the officials thought this through," says Thomas Abraham, a professor with The University of Hong Kong, and a former consultant for the World Health Organisation (WHO) on risk communication. "Spraying people with bleach can prove to be harmful, and there is no guideline … that recommends it. This was some sort of a kneejerk reaction."
Although spraying individuals with chemicals led to a furor in the South Asian nation owing to its potential dangers, so-called "disinfection tunnels" have sprung up in crowded public places around the world, including malls, offices, airports, railway stations and markets. Touted as mass disinfectants, these tunnels spray individuals with chemical disinfectant liquids, mists or fumes through nozzles for a few seconds, purportedly to sanitize them -- though experts strongly condemn their use. The tunnels have appeared in at least 16 countries: India, Malaysia, Scotland, Albania, Argentina, Colombia, Singapore, China, Pakistan, France, Vietnam, Bosnia and Herzegovina, Chile, Mexico, Sri Lanka and Indonesia. Russian President Vladimir Putin even reportedly has his own tunnel at his residence.
While U.S. visitors to Mexico are "disinfected" through these sanitizing tunnels, there is no evidence that the mechanism is currently in use within the United States. However, the situation could rapidly change with international innovators like RD Pack, an Israeli start-up, pushing for their deployment. Many American and multinational companies like Stretch Structures, Guilio Barbieri and Inflatable Design Works are also producing these systems. As countries gradually ease lockdown restrictions, their demand is on the rise -- despite a stringent warning from the WHO against their potential health hazards.
"Spraying individuals with disinfectants (such as in a tunnel, cabinet, or chamber) is not recommended under any circumstances," the WHO warned in a report on May 15. "This could be physically and psychologically harmful and would not reduce an infected person's ability to spread the virus through droplets or contact. Moreover, spraying individuals with chlorine and other toxic chemicals could result in eye and skin irritation, bronchospasm due to inhalation, and gastrointestinal effects such as nausea and vomiting."
Disinfection tunnels largely spray a diluted mixture of sodium hypochlorite, a chlorine compound commonly known as bleach, often used to disinfect inanimate surfaces. Known for its hazardous properties, the WHO, in a separate advisory on COVID-19, warns that spraying bleach or any other disinfectant on individuals can prove to be poisonous if ingested, and that such substances should be used only to disinfect surfaces.
Considering the effect of sodium hypochlorite on mucous membranes, the European Centre for Disease Prevention and Control, an EU agency focussed on infectious diseases, recommends limited use of the chemical compound even when disinfecting surfaces – only 0.05 percent for cleaning surfaces, and 0.1 percent for toilets and bathroom sinks. The Indian health ministry also cautioned against spraying sodium hypochlorite recently, stating that its inhalation can lead to irritation of mucous membranes of the nose, throat, and respiratory tract.
In addition to the health hazards that such sterilizing systems pose, they have little utility, argues Indian virologist T. Jacob John. Since COVID-19 is a respiratory disorder, disinfecting a person's body or clothes cannot protect them from contracting the novel coronavirus, or help in containing the pathogen's spread.
"It's a respiratory infection, which means that you have the virus in your respiratory tract, and of course, that shows in your throat, therefore saliva, etc.," says John. "The virus does not survive outside the body for a long time, unless it is in freezing temperatures. Disinfecting a person's clothes or their body makes no sense."
Disinfection tunnels have limited, if any, impact on the main modes of coronavirus transmission, adds Craig Janes, director, School of Public Health and Health Systems at Canada's University of Waterloo. He explains that the nature of COVID-19 transmission is primarily from person-to-person, either directly, or via an object that is shared between two individuals. Measures like physical distancing and handwashing take care of these transmission risks.
"My view of these kinds of actions are that they are principally symbolic, indicating to a concerned population that 'something is being done,' to martial support for government or health system efforts," says Janes. "So perhaps a psychological benefit, but I'm not sure that this benefit would outweigh the risks."
"They may make people feel that their risk of infection has been reduced, and also that they do not have to worry about infecting others."
A recent report by Health Care Without Harm (HCWH), an international not-for-profit organization focused on sustainable health care around the world, states that disinfection tunnels have little evidence to demonstrate their efficacy or safety.
"If the goal is to reduce the spread of the virus by decontaminating the exterior clothing, shoes, and skin of the general public, there is no evidence that clothes are an important vector for transmission. If the goal is to attack the virus in the airways, what is the evidence that a 20-30 second external application is efficacious and safe?" the report questions. "The World Health Organization recommends more direct and effective ways to address hand hygiene, with interventions known to be effective."
If an infected person walks through a disinfection tunnel, he would still be infectious, as the chemicals will only disinfect the surfaces, says Gerald Keusch, a professor of medicine and international health at Boston University's Schools of Medicine and Public Health.
"While we know that viruses can be "disinfected" from surfaces and hands, disinfectants can be harmful to health if ingested or inhaled. The underlying principle of medicine is to do no harm, and we always measure benefit against risk when approving interventions. I don't know if this has been followed and assessed with respect to these devices," says Keusch. "It's a really bad idea."
Experts warn that such tunnels may also create a false sense of security, discouraging people from adopting best practice methods like handwashing, social distancing, avoiding crowded places, and using masks to combat the spread of COVID-19.
"They may make people feel that their risk of infection has been reduced, and also that they do not have to worry about infecting others," says Janes. "These are false assumptions, and may lead to increasing rather than reducing transmission."
n artist rendering of a "smart toilet" that gathers biometric data to monitor a person's health in real time.
It looks like an ordinary toilet but it is anything but. The "smart toilet" is the diagnostic tool of the future, equipped with cameras that take snapshots of the users and their waste, motion sensors to analyze what's inside the urine and stool samples, and software that automatically sends data to a secure, cloud-based system that can be easily accessed by your family doctor.
"It's a way of doing community surveillance. If there is a second wave of infections in the future, we'll know right away."
Using urine "dipstick tests" similar to the home pregnancy strips, the smart toilet can detect certain proteins, immune system biomarkers and blood cells that indicate the presence of such diseases as infections, bladder cancer, and kidney failure.
The rationale behind this invention is that some of the best ways of detecting what's going on in our bodies is by analyzing the substances we excrete every day, our sweat, urine, saliva and yes, our feces. Instead of getting sporadic snapshots from doctor's visits once or twice a year, the smart toilet provides continuous monitoring of our health 24/7, so we can catch the tell-tale molecular signature of illnesses at their earliest and most treatable stages. A brainchild of Stanford University researchers, they're now working to add a COVID-19 detection component to their suite of technologies—corona virus particles can be spotted in stool samples—and hope to have the system available within the year.
"We can connect the toilet system to cell phones so we'll know the results within 30 minutes," says Seung-min Park, a lead investigator on the research team that devised this technology and a senior research scientist at the Stanford University School of Medicine. "The beauty of this technology is that it can continuously monitor even after this pandemic is over. It's a way of doing community surveillance. If there is a second wave of infections in the future, we'll know right away."
Experts believe that the COVID-19 pandemic will accelerate the widespread acceptance of in-home diagnostic tools such as this. "Shock events" like pandemics can be catalysts for sweeping changes in society, history shows us. The Black Death marked the end of feudalism and ushered in the Renaissance while the aftershocks of the Great Depression and two world wars in the 20th century led to the social safety net of the New Deal and NATO and the European Union. COVID-19 could fundamentally alter the way we deliver healthcare, abandoning the outdated 20th century brick and mortar fee-for-service model in favor of digital medicine. At-home diagnostics may be the leading edge of this seismic shift and the pandemic could accelerate the product innovations that allow for home-based medical screening.
"That's the silver lining to this devastation," says Dr. Leslie Saxon, executive director of the USC Center for Body Computing at the Keck School of Medicine in Los Angeles. As an interventional cardiologist, Saxon has spent her career devising and refining the implantable and wearable wireless devices that are used to treat and diagnose heart conditions and prevent sudden death. "This will open up innovation—research has been stymied by a lack of imagination and marriage to an antiquated model," she adds. "There are already signs this is happening—relaxing state laws about licensure, allowing physicians to deliver health care in non-traditional ways. That's a real sea change and will completely democratize medical information and diagnostic testing."
Ironically, diagnostics have long been a step-child of modern medicine, even though accurate and timely diagnostics play a crucial role in disease prevention, detection and management. "The delivery of health care has proceeded for decades with a blind spot: diagnostic errors—inaccurate or delayed diagnoses—persist throughout all settings of care and continue to harm an unacceptable number of patients," according to a 2015 National Academy of Medicine report. That same report found as many as one out of five adverse events in the hospital result from these errors and they contribute to 10 percent of all patient deaths.
The pandemic should alter the diagnostic landscape. We already have a wealth of wearable and implantable devices, like glucose sensors to monitor blood sugar levels for diabetics, Apple's smart watch, electrocardiogram devices that can detect heart arrythmias, and heart pacemakers.
The Food and Drug Administration is working closely with in-home test developers to make accurate COVID-19 diagnostic tools readily available and has so far greenlighted three at-home collection test kits. Two, LabCorp's and Everlywell's, use nasal swabs to take samples. The third one is a spit test, using saliva samples, that was devised by a Rutgers University laboratory in partnership with Spectrum Solutions and Accurate Diagnostic Labs.
The only way to safely reopen is through large scale testing, but hospitals and doctors' offices are no longer the safest places.
In fact, DIY diagnostic company Everlywell, an Austin, Texas- based digital health company, already offers more than 30 at-home kits for everything from fertility to food sensitivity tests. Typically, consumers collect a saliva or finger-prick blood sample, dispatch it in a pre-paid shipping envelope to a laboratory, and a physician will review the results and send a report to consumers' smartphones.
Thanks to advances in technology, samples taken at home can now be preserved long enough to arrive intact at diagnostic laboratories. The key is showing the agency "transport and shipping don't change or interfere with the integrity of the samples," says Dr. Frank Ong, Everlywell's chief medical and scientific officer.
Ong is keenly aware of the importance of saturation testing because of the lessons learned by colleagues fighting the SARS pandemic in his family's native Taiwan in 2003. "In the beginning, doctors didn't know what they were dealing with and didn't protect themselves adequately," he says. "But over two years, they learned the hard way that there needs to be enough testing, contact tracing of those who have been exposed, and isolation of people who test positive. The value of at-home testing is that it can be done on the kind of broad basis that needs to happen for our country to get back to work."
Because of the pandemic, new policies have removed some of the barriers that impeded the widespread adoption of home-based diagnostics and telemedicine. Physicians can now practice across state lines, get reimbursed for telemedicine visits and use FaceTime to communicate with their patients, which had long been considered taboo because of privacy issues. Doctors and patients are becoming more comfortable and realizing the convenience and benefits of being able to do these things virtually.
Added to this, the only way to safely reopen for business without triggering a second and perhaps even more deadly wave of sickness is through large-scale testing, but hospitals and doctors' offices are no longer the safest places. "We don't want people sitting in a waiting room who later find out they're positive, and potentially infected everyone, including doctors and nurses," says Dr. Kavita Patel, a physician in Washington, DC who served as a policy director in the Obama White House.
In-home testing avoids the risks of direct exposure to the virus for both patients and health care professionals, who can dispense with cumbersome protective gear to take samples, and also enables people without reliable transportation or child-care to learn their status. "At home testing can be a critical component of our country's overall testing strategy," says Dr. Shantanu Nundy, chief medical officer at Accolade Health and on the faculty of the Milken Institute School of Public Health at George Washington University. "Once we're back at work, we need to be much more targeted, and have much more access to data and controlling those outbreaks as tightly as possible. The best way to do that is by leapfrogging clinics and being able to deliver tests at home for people who are disenfranchised by the current system."
In the not-too-distant future, in-home diagnostics could be a key component of precision medicine, which is customized care tailored specifically to each patient's individual needs. Like Stanford's smart toilet prototype, these ongoing surveillance tools will gather health data, ranging from exposures to toxins and pollutions in the environment to biochemical activity, like rising blood pressure, signs of inflammation, failing kidneys or tiny cancerous tumors, and provide continuous real-time information.
"These can be deeply personalized and enabled by smart phones, sensors and artificial intelligence," says USC's Leslie Saxon. "We'll be seeing the floodgates opening to patients accessing medical services through the same devices that they access other things, and leveraging these tools for our health and to fine tune disease management in a model of care that is digitally enabled."
[Editor's Note: This article was originally published on June 8th, 2020 as part of a standalone magazine called GOOD10: The Pandemic Issue. Produced as a partnership among LeapsMag, The Aspen Institute, and GOOD, the magazine is available for free online.]