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."
Could Biologically Enhancing Our Morality Save Our Species?
A human head pictured with a red heart in the place of a brain.
As a species, we are prone to weaponizing. There is a famous anecdote from Wulf Schievenhovel, a German anthropologist who was working in the highlands of New Guinea studying a local tribe. One day, he offered two tribesmen a flight in an airplane. They duly accepted but showed up with two large stones. When he asked why, they told him that they wanted to drop them on a neighboring village. Ethologist Frans de Waal later remarked on this story that Schievenhovel had effectively "witnessed the invention of the bomb."
Today you don't have to be Putin or Kim Jong Un to pose an existential threat.
Modern technology has given us access to more than just rocks. In 2011, a Swedish man was arrested after attempting a nuclear fission in his kitchen. And in the inaugural issue of this magazine, my colleague Hank Greely raised a terrifying prospect:
"do-it-yourself hobbyists can use CRISPR [gene editing]… to change the genomes of whole species of living things – domestic or wild; animal, vegetable, or microbial – cheaply, easily, and before we even know it is happening."
In science fiction, it is typically governments that take over technologies and use them for evil. That risk is of course no fiction. It is an ongoing problem that we have addressed through institutions: democracies, constitutions, legal systems and international treaties, and groups working together as checks and balances. It isn't perfect, but it has worked (so far).
Today you don't have to be Putin or Kim Jong Un to pose an existential threat. We are rapidly acquiring the technological ability for individuals and groups not just to cause major harm, but to do so exactly as Hank said: "cheaply, easily, and before we even know it is happening."
How should we address this problem? Together with Ingmar Persson, a fellow philosophy professor at Gothenburg, Sweden, I have argued that while education, institutions and good policing are important, we may need to think more radically.
We could adapt our biology so that we can appreciate the suffering of foreign or future people in the same instinctive way we do our friends and neighbors.
We evolved, along with the New Guinea tribesmen, to care about our small group and to be suspicious of outsiders. We evolved to cooperate well within our group, at a size where we could keep an eye on free riders. And we evolved to have the ability, and occasionally the desire to harm others, but with a natural limit on the amount of harm we could do—at least before others could step in to prevent, punish or kill us.
Our limitations have also become apparent in another form of existential threat: resource depletion. Despite our best efforts at educating, nudging, and legislating on climate change, carbon dioxide emissions in 2017 are expected to come in at the highest ever following a predicted rise of 2 percent. Why? We aren't good at cooperating in larger groups where freeriding is not easily spotted. We also deal with problems in order of urgency. A problem close by is much more significant to us than a problem in the future. That's why even if we accept there is a choice between economic recession now or natural disasters and potential famine in the future, we choose to carry on drilling for oil. And if the disasters and famine are present day, but geographically distant, we still choose to carry on drilling.
So what is our radical solution? We propose that there is a need for what we call moral bioenhancement. That is, for seeking a biological intervention that can help us overcome our evolved moral limitations. For example, adapting our biology so that we can appreciate the suffering of foreign or future people in the same instinctive way we do our friends and neighbors. Or, in the case of individuals, in addressing the problem of psychopathy from a biological perspective.
There is no reason in principle why humans could not be genetically modified...to make them kinder, happier, more conscientious, altruistic and just.
We have been dramatically successful at modifying various moral characteristics of non-human animals. Over ten thousand years or so, we have turned wolves into dogs by selective breeding, and those dogs into breeds with behavioural as well as physical characteristics: certain breeds can be faithful, hard working, good tempered and intelligent (or the opposite). Scientists have manipulated the expression of genes in prairie voles to cause them to form a mate bond more quickly, and in monkeys to make them work harder. There is no reason in principle why humans could not be genetically modified using gene editing, or their brains modified in other ways, to make them kinder, happier, more conscientious, altruistic and just.
One objection is that this is a pipe dream: even if it is acceptable to do this, it is so unlikely to be achievable, it is not worth pursuing. However, research has shown that we are already morally modified. This is widely accepted when it comes to negative effects. For example, we all know that alcohol can lead people to aggressive or other destructive behaviours that they would not have countenanced sober. In a 2008 case, a retired UK teacher was cleared of child pornography charges after he successfully argued his behaviour was caused by a drug prescribed for his Parkinson's disease. There is also evidence that we can be morally modified in a more positive direction. For example, SSRIs like Prozac, a class of drugs widely used to treat depression, have been shown to act on healthy volunteers to make them more cooperative and less critical.
Another objection is that we need the negative aspects of our human character. We need people who can fight wars. We need to be able to blot out the suffering of the wider world: to experience it as we would if it applied to our nearest and dearest would be unbearable. This might be so. If aggressiveness and denial, or strong bonding to small communities, are important traits, it is important that we understand how, and to what degree, they should be controlled. It is unlikely that nature has dished out exactly the right levels of all morally relevant characteristics on an individual or population level. We don't claim to have all the answers to what characteristics we need to enhance, and what characteristics we need to diminish. But we see no reason to believe that the status quo is the optimum.
We haven't argued that we should go blindly in now with half-baked moral enhancers, or that we should forget about moral education, or legal solutions. Evolution has a built-in response to existential threats through adaptation. But adaptation takes generations and can't deal with threats that take out a whole population. Some threats are too important —and too urgent—to be left to chance.
Deep Brain Stimulation for Mental Illnesses Raises Ethical Concerns
Deep brain stimulation: This neurosurgical treatment involves the implantation of electrodes in the cerebral lobes of the brain, linked through the scalp (top) to wires (down right) leading to a battery implanted below the skin. This sends electrical impulses to specific areas of the brain. DBS was developed for the treatment of Parkinson's disease, but is being investigated for use in other conditions.
Imagine that you are one of the hundreds of millions of people who suffer from depression. Medication hasn't helped you, so you're looking for another treatment option. Something powerful enough to change your mood as soon as you need a lift.
"If a participant experiences a personality change, does this change who they are or dehumanize them by altering their nature?"
Enter deep brain stimulation: a type of therapy in which one or more electrodes are inserted into your brain and connected to a surgically implanted, battery-operated medical device in your chest. This device, which is approximately the size of a stopwatch, sends electric pulses to a targeted region of your brain. The idea is to control a variety of neurological symptoms that can't be adequately managed by drugs.
Over the last twenty years, deep brain stimulation, known as DBS, has become an efficient and safe alternative for the treatment of chronic neurological diseases such as epilepsy, Parkinson's disease and neuropathic pain. According to the International Neuromodulation Society, there have been more than 80,000 deep brain stimulation implants performed around the world.
The Food and Drug Administration approved DBS as a treatment for essential tremor and Parkinson's in 1997, dystonia in 2003 and obsessive compulsive disorder in 2009. Since doctors can use drugs and treatments "off-label" (not approved by the FDA) to treat patients with any disease, DBS is now also being investigated as a treatment for chronic pain, PTSD and major depression.
And these new applications are raising profound ethical questions about individuality, personality, and even what it means to be human.
"These patients are essentially having a computer that can modify and influence emotional processing, mood and motor outputs inserted into the brain," said Gabriel Lazaro-Munoz, an assistant professor at The Center for Medical Ethics and Health Policy at Baylor College of Medicine. "These responses define us as human beings and dictate our autonomy. If a participant experiences a personality change, does this change who they are or dehumanize them by altering their nature? These are some of the questions we have to consider."
"When we are not in control of ourselves, are we ourselves?"
The U.S. government has similar concerns about DBS. The National Institutes of Health recently awarded grants to study the neuroethical issues surrounding the use of DBS in neuropsychiatric and movement disorders and appropriate consent for brain research. The grants are part of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative. Walter Koroshetz, director of NIH's National Institute of Neurological Disorders and Stroke said, "Neuroscience is rapidly moving toward a new frontier of research on human brains that may have long-lasting and unforeseen effects. These new awards signal our commitment to research conducted in a responsible way as to anticipate all potential consequences, and to ensure that research subjects have a clear understanding of the potential benefits and risks of participating in studies."
Dr. Lazaro-Munoz's Center was awarded one of the grants to identify and evaluate the ethical, legal and social concerns with adaptive deep brain stimulation (aDBS) technologies. Adaptive DBS is a relatively new version of the technology that enables recording of brain cell activity that is then used to regulate the brain in real time. He and his team will closely observe researchers conducting aDBS studies and administering in-depth interviews to trial participants, their caregivers, and researchers, as well as individuals who declined to participate in such studies. The goal is to gain a better understanding of the ethical concerns at stake in order to guide responsible research.
Dr. Lazaro-Munoz said one of the concerns is dehumanization. "By using this technology are we compromising what makes us human? When we are not in control of ourselves, are we ourselves?" He notes that similar concerns were raised about pharmaceutical treatments for illnesses. "Both change behaviors and emotional processing. However, there is a difference. Culturally we are more used to using drugs, not implanting devices into brain and computer interfaces. Many people think of it as science fiction."
The changes in behavior due to DBS can be dramatic, perhaps none more so than with Parkinson's disease; patients may see their chronic tremors suddenly vanish.
Pills for OCD and depression take longer than DBS to see significant improvement, sometimes months. "A DBS device is either on or off. And patients and families see changes immediately," Dr. Lazaro-Munoz said. "Family members are often startled by these changes, as are the patients." He's observed that patients feel more in control with pills because they can alter and "play" with the dose or even skip a dose.
The changes in behavior due to DBS can be dramatic, perhaps none more so than with Parkinson's disease; patients may see their chronic tremors suddenly vanish, like in this must-see video.
But surgical procedures to treat motor symptoms are also increasingly being implicated as a cause of behavioral changes, both positive and negative, in patients with Parkinson's. The personality changes reported in patients who undergo DBS include hypermania, pathological gambling, hypersexuality, impulsivity and aggressiveness. One patient who suffered from OCD fell in love with the music of Johnny Cash when his brain was stimulated. On the positive side, patients report memory enhancement.
One patient who is pleased with DBS is Greg Barstead, who was diagnosed with Parkinson's in 2003, when he was the president of Colonial Penn Life Insurance Company. He also has dystonia, which affects his neck and shoulders. Barstead said that DBS has been helpful for a range of symptoms: "My shoulder is a lot less stiff and my neck hurts less. And my tremors are under control. It is not perfect, as it doesn't relieve all the Parkinson's symptoms, but it does enough of a good job that both my wife and I are very happy I had DBS."
"We are not exactly sure what part of the brain causes depression. Doctors have not identified where to implant the device."
He said he hasn't noticed any personality changes, but noted that the disease itself can cause such changes. In fact, studies have shown that it can cause many psychiatric problems including depression and hallucinations. And, approximately a third of Parkinson's patients develop dementia.
Arthur L. Caplan, founding head of the Division of Medical Ethics at NYU School of Medicine, notes that unlike psychosurgery, DBS can be turned on and off and the device can be removed. "There are less ethical concerns around treating patients with Parkinson's disease than other illnesses because surgeons know exactly where to implant the device and have many years of experience with it," he said, adding that he is concerned about using DBS for other illnesses, such as depression. "We are not exactly sure what part of the brain causes depression. Doctors have not identified where to implant the device. And I would certainly not advocate its use in patients with mild depression."
Dr. Lazaro-Munoz said of the personality changes possible with DBS, physicians need to consider how the patients were functioning without it. "Patients who are candidates for DBS typically used many medications as well as psychotherapy before opting for DBS," he explained. "To me, the question is what is the net result of using this technology? Does the patient have regrets? Are the changes in personality significant or not? Although most DBS patients report being happy they underwent the procedure, some say they don't feel like themselves after DBS. Others feel they are more like themselves, especially if there are dramatic improvements in movement problems or relief of OCD symptoms."
And then there is the question of money. The costs of DBS are covered by most insurance companies and Medicare only for FDA-approved targets like Parkinson's. Off-label uses are not covered, at least for now.
Caplan reminds people that DBS devices are manufactured by companies that are interested in making money and the average cost per treatment is around $50,000. "I am interested in seeing DBS move forward," he said. "But we must be careful and not allow industry to make it go too fast, or be used on too many people, before we know it is effective."