Why Are Autism Rates Steadily Rising?
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."
With Mentors, Models, and #MeToo, Femtech Comes of Age
In her quest to become a tech entrepreneur, Stacy Chin has been an ace at tackling thorny intellectual challenges, mastering everything from molecules to manufacturing.
These mostly female leaders of firms with products addressing women's health concerns are winning in a big way, raising about $1.1 billion in startup funds over the past few years.
But the 28-year-old founder of HydroGlyde Coatings, based in Worcester, Mass., admitted to being momentarily stumped recently when pitching her product – a new kind of self-lubricating condom – to venture capitalists.
"Being a young female scientist and going into that sexual healthcare space, it was definitely a little bit challenging to learn how to navigate during presentations and pitches when there were a lot of older males in the audience," said Chin, whose product is of special appeal to older women suffering from vaginal dryness. "I eventually figured it out, but it wasn't easy."
Chin is at the vanguard of a new generation of "femtech" entrepreneurs heading companies with names like LOLA Tampons, Prelude Fertility, and Peach, bringing once-taboo topics like menstruation, ovulation, incontinence, breastfeeding, pelvic pain and, yes, female sexual pleasure to the highest chambers of finance. These mostly female leaders of firms with products addressing women's health concerns are winning in a big way, raising about $1.1 billion in startup funds over the past few years, according to the New York data analytics firm CB Insights.
"We are definitely at a watershed moment for femtech. But we need to remember that [it's] an overnight sensation that is decades in the making."
If the question is "Why now?", the answer may be that femtech leaders are benefiting from the current conversations around respect for women in the workplace, and long-term efforts to achieve gender equality in the male-dominated tech industry.
"We are definitely at a watershed moment for femtech," said Rachel Braun Scherl, a self-described "vaginepreneur" whose new book, "Orgasmic Leadership," profiles femtech leaders. "But we need to remember that femtech is an overnight sensation that is decades in the making."
In contrast with earlier and perhaps less successful generations of women in tech, these pioneers can point to mentors who are readily accessible, as well as more female VC and corporate heads they can directly address when making pitches. There's also a changing cultural landscape where sexual harassment is in the news and women who talk openly about sex in a business context can be taken seriously.
"Change is definitely in the air," said Kevin O'Sullivan, the president and CEO of Massachusetts Biomedical Initiatives, who sponsored Chin and has helped launch more than a hundred biotech companies in his home state since the 1980s.
Like a pinprick bursting a balloon, the #MeToo social movement and its focus on the prevalence of sexual harassment and assault is a factor in the success of femtech, some experts believe, provoking heightened awareness about the role of women in society -- including equal access to start-up capital.
"If such a difficult topic is being discussed in the open, that means more and more people are speaking out and are no longer afraid about sharing their own concerns," said Debbie Hart, president and CEO of BioNJ, a business trade group she founded in 1994. "That's empowering the whole women's movement."
The power of programs that allow young women to witness successful older women in leadership cannot be overstated.
Observers like Hart say that femtech's advent is also due to a payoff from longer-term investments in a slew of programs encouraging girls to pursue STEM careers and women to be hired as leaders, as well as changing social norms to allow female health to be part of the public discourse.
The power of programs that allow young women to witness successful older women in leadership cannot be overstated, according to Susan Scherreik of the Stillman School of Business at Seton Hall University in New Jersey.
"What I have found in entrepreneurship is that it's all about two things: role models and mentoring," said Scherreik, director of the university's Center for Entrepreneurial Studies.
One of Scherreik's top students, Madison Schott, is convinced that the availability of female mentors has been instrumental to her success and will remain so in her future. "It definitely is very encouraging," said Schott, who won the "Pirates Pitch" university-wide business start-up competition in April for an app she is developing that uses AI to guide readers to reliable news sources. "Woman to woman," she added, "you can be more open when you have questions or problems."
Programs that showcase successful females in leadership positions are beginning to bear fruit, inspiring a new generation of females in business, according to Susan Scherreik (at left), director of Seton Hall University's Center for Entrepreneurial Studies at the Stillman School of Business. Her student, Madison Schott (right), is the winner of a university-wide business start-up competition for an app she is developing.
While femtech entrepreneurs may be the beneficiaries of change, they also may be its agents. Scherl, the author, who has been working in the female healthcare sector for more than a decade, believes in persistence. In 2010, organizers of a major awards show banned a product she was marketing, Zestra Essential Arousal Oils*, from a gift bag for honorees. Two years ago, however, times changed and femtech prevailed. The company making goodie bags for Academy Awards nominees included another one of her products, Nuelle's Fiera, a $250 vibrator.
"We come from so many different perspectives when it comes to sex, whether it is cultural, religious, age-related, or even from a trauma, so we never have created a common language," Scherl said. "But we in femtech are making huge progress. We are not only selling products now, we are selling conversation, and we are selling a comfort with sexuality in all its complex forms."
[*Correction: Due to a reporting error, the product that was banned in 2010 was initially identified as Nuelle's Fiera, not Zestra Essential Arousal Oils. The article has been updated for accuracy. --Editor]
Worried About Eating GMOs? That’s Not the Real Problem
The 21st century food system is awash in ethical issues. To name just a handful: There's the environmental impacts of farming, the human health effects of diets based on animal products and processed foods, the growing clamor around food waste, and the longstanding concerns about agricultural labor. The last decade has seen the emergence of "ethical consumption," as people have been encouraged to avoid products that are associated with animal cruelty or unfair to farmers.
Misguided concerns about GMOs are missing the point altogether and distracting from a far more substantive ethical problem.
But consumers have never been so ignorant about where food comes from, and they are vulnerable to oversimplifications and faulty messaging. Many would include the first generation of crops from agricultural applications of recombinant DNA methods for genetic improvement—so called GMOs—among the foods they should avoid for ethical reasons. Unfortunately, these misguided concerns are missing the point altogether and distracting from a far more substantive ethical problem.
As we stand on the precipice of a new era in food and biotechnology – crops and animals with genomes altered through gene editing – it is more important than ever to let go of unnecessary fears and to pay attention to the real hazards of agricultural innovation.
But first, as a bioethicist with almost 40 years of experience working on issues in the food system, let me stress the overall context and rationale for trying to make changes in plant and animal genetics. Doing so, whether through conventional breeding or biotechnology, allows producers to meet the challenges of seasonal climate differences and increase yields.
And just because a food was created through ordinary plant breeding vs. genetic modification does not automatically make it safe. Things can and do go wrong in ordinary plant breeding, such as with potatoes and tomatoes. These both produce toxins in the green parts of the plant, and breeders exercise caution to ensure that toxins aren't transferred to edible parts.
Despite real risks, there is no regulatory oversight that protects us from these known hazards. We rely on the professional ethics of agricultural scientists. And GMOs are, in comparison, much more carefully tested and regulated. The claim that they are "unregulated" is just false.
We should not ignore the role that all gene technologies have played in displacing small farmers, depleting rural communities, and shifting economic control.
I do want to shift the public's attention away from the anti-GMO debate to more substantive questions about contemporary agriculture that really have little to do with where the genes in their food came from, or how they got there.
No matter how important genetic improvements might be in terms of total global food production, we should not ignore the role that all gene technologies—including breeding—have played in displacing small farmers, depleting rural communities and shifting economic control of agriculture into a small circle of powerful actors. Globally, these changes have had disproportionately harmful effects on women and people of color.
Combined with mechanization and chemicals, gene technologies have freed planters from their dependence on impoverished and poorly educated field hands, but they did nothing to help the fieldworkers transition to a new line of work. These are the real problems that deserve the public's and the science community's attention, not the overly narrow worries about eating GMOs.
But these problems are viewed as "not ours" by agricultural insiders, and they continue to be ignored by scientists whose focus is solely on biology. Many of the concerns that are today viewed as "urban problems" or "social issues" have origins in agriculture. For example, in California tomatoes, the development of mechanical harvesting led to a rapid concentration of ownership and the displacement of thousands of field hands. In the South, similar technologies displaced black farmers working land owned by whites, causing migration to urban centers and unskilled jobs. I must fault the science community for a lack of willingness to even take the thrust of these more socially oriented critiques seriously.
The new suite of tools for genetic modification that go under the name "gene editing" promise greater precision. They should allow scientists to target the locus for new genes in a plant or animal genome, and minimize the chance for causing unwanted impacts on gene functioning. This added precision is reducing some of the uncertainties in the mind of technology developers, and they have been expressing hope that their own confidence will be shared by regulators and by the public at large. In fact, the U.S. government recently issued a statement that gene-edited crops do not require additional regulation because they're just as safe as crops produced through conventional breeding.
It is indeed possible that the public doubts about genetically modified food will be assuaged by this argument. We can only wait and see. Whether or not gene editing will lead to more reflection about agriculture's complicity in problems of economic inequality or structural racism depends much more on the culture of the science community than it does on the technology itself.