Autism, Then And Now: Sweeping New Book Puts ‘Epidemic’ In Perspective

In May of 2000, Wired magazine writer Steve Silberman was covering an Alaskan cruise for a hundred distinguished computer programmers, and asked one of the most distinguished, Larry Wall, creator of the programming language Perl, if he could interview him later on at home.

“Sure,” was the answer. “But just so you know, we have an autistic daughter.”

Six months later, Silberman was writing about another high-profile Silicon Valley family, and asked for another home interview. The reply was eerily similar: Yes, but “I should tell you, we have an autistic daughter.”

Soon after, Silberman recalls, he was sitting at a San Francisco cafe and telling a friend about that odd coincidence, when “a woman at the next table blurted out, ‘Do you realize what’s happening? I’m a special-ed teacher in Silicon Valley. There is an epidemic of autism in Silicon Valley. Something terrible is happening to our children.”

Author Steve Silberman (courtesy)

Author Steve Silberman (courtesy)

He got a chill — the kind of chill that makes him want to start reporting and researching. At that point, he says, “I was very naive about autism. Like most people at the time, everything I knew about autism I had learned from ‘Rain Man.’ ”

He is naive no longer. First, he wrote a landmark article in Wired, “The Geek Syndrome,” about why the autism diagnoses in Silicon Valley might be going up. (The theory: People carrying genes for autism who were working in the technology industry had more social opportunities to meet one another and have children together than they’d ever had in history — a process that geneticists call “assortative mating.”)

And now, Silberman has written “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” a history of society’s changing attitudes toward autism, as seen through the eyes of parents, clinicians and autistic people themselves. It’s due out Aug. 25 and — if my appreciation for its breadth, depth and power is any indication — it’s likely to make a big splash. (Also provoke some controversy, given its unflinching takes on some of autism’s more contentious issues, from possible causes to biomedical “cures”.)

I asked Silberman to answer what seem to me the most burning questions about autism: Is prevalence really rising? How to explain kids who lose their diagnosis? What does the research promise? Our conversation, lightly edited, beginning with more about “The Geek Syndrome”:

SS: The article came out, it was very well received, and I got tons of email about it — and then I kept getting email about it for 10 years, which is very unusual. But here’s the thing: When I wrote the article, most of the families I talked to were keenly interested in what had caused their child’s autism. Some believed that it was vaccines, some believed that it was environmental contaminants, some thought it was genetics.

But by the time a decade had gone by, what they were worried about was not what had caused their child’s autism; what they were worried about was the shocking lack of services for autistic teenagers and adults — like transitional services to help them go from school to the workplace, services to help them learn how to live independently in the community, and so on.

So I began to be haunted by the fact that my narrow focus on the dynamics of autism in high-tech communities had, in a sense, led me astray, and that there was a much larger problem for autistic people and their families worldwide, which is the availability of services. That’s what parents are really wrestling with on a day-to-day basis.

neurotribes

So you moved with the times…and also, services are something we can actually do something about right now.

Exactly. That’s actually a more profound statement than one might think. Some very well-meaning people think that society’s best investment would be to ‘cure autism.’ Well, we’ve been working on curing schizophrenia for a very long time, and for decades, psychoanalysts were working on ‘curing’ homosexuality. But these are very, very complex genetic conditions, and have a lot of contributing factors; perhaps a much more humane thing to do is to ensure that autistic people and their families have access to happier, healthier, safer, more secure, more engaged and more productive lives. That goal is within our reach right now and doesn’t depend on the next medical breakthrough.

You’ve done a lot of reporting over the years into potential risk factors for autism in the environment — this week’s cause-of-autism du jour — and you know what happens to those stories: They make a big splash, everyone’s talking about them, and then they quietly go away.

If we look at what has been blamed for causing autism over the last few years, it’s everything from autoimmune dysfunction, impaired sugar metabolism, antidepressants in the water supply, mitochondrial disorders, living near a freeway, too little oxytocin, too much testosterone… the list goes on and on.

“So it’s an epidemic of recognition, really.”

– Author Steve Silberman

Might some of those things contribute to autism? Sure. But what we have to remember is that there have been, in recent years, at least three big studies that look at the crucial question: Is autism actually increasing in the population or is it just that we’re getting better at diagnosing it, and becoming more aware of it as a society, and learning how to spot it in early childhood?

And the conclusion of all three studies — including one in Sweden in 2015 that involved over 1 million children, including 19,000 twin pairs, and one in England by a researcher named Terry Brugha — was that the rates of autism have not really been going up. What has been going up is the rates of diagnosis. So it’s an epidemic of recognition, really.

So given the latest, biggest, best studies, it really does look like that’s what’s going on, and not an actual rise in prevalence? Continue reading

Sexting Among Adults May Be More Common Than You Think, Survey Suggests

A middle-aged woman I know recently confessed that she’s been doing quite a bit of provocative, R-rated texting with a man she’s involved with.

When I referred to it as “sexting” she was shocked. “It’s not like we’re sending naked pictures back and forth,” she said. “Just a little suggestive ‘What are you wearing?’ kind of thing. It’s fun.”

Welcome to the new world of sexting.

It turns out grownups in committed relationships are, increasingly, doing it for pleasure and “fun,” as one survey found. Also, according to researchers, the whole concept of “sexting” has evolved, or at least is evolving: from a risky, sordid and sometimes-dangerous activity among teens, to, as one therapist (more below) says, a way to add some sexual “simmering” to a relationship that may need spicing up. Even the AARP acknowledges the trend: “…the reality is that more and more of the 50-plus set, both single and married, routinely use text messaging to send tantalizing pictures and provocative words to their partner…”

Reframing Sexting

Indeed, sexting may be more popular among adults than you think.

A new survey on sexting found that 88 percent of respondents, ages 18-82, said they’d done it, and 82 percent said they’d done it in the past year (including the 82-year-old). Also, nearly 75 percent said they sexted in the context of a committed relationship, while 43 percent said they sexted as part of a casual relationship. (On the darker side, 12 percent reported sexting someone “in a cheating relationship.”) The findings were presented at the American Psychological Association annual convention in Toronto earlier this month in a paper called: “Reframing Sexting as a Positive Relationship Behavior.”

(Photo illustration by Mike Licht/Flickr, taking inspiration from the artist Edward Armitage)

(Photo illustration by Mike Licht/Flickr, taking inspiration from the artist Edward Armitage)

The survey of 870 heterosexual individuals in the U.S. also found that in general, more sexting was associated with a higher level of sexual satisfaction. More than half of the responses came from women; the average age of participants was 35, according to the study authors.

On one level, it’s not surprising that sexting is becoming more mainstream.

“If we look at how technology has been integrated into our society — it’s so much part of our daily lives — it makes sense that it would become part of our dating and sexual lives as well,” said Emily Stasko, MPH, a doctoral candidate in psychology at Drexel University in Philadelphia and the survey’s co-author, along with Pamela Geller, PhD, associate professor of psychology, ob/gyn and public health at Drexel.

Attitudes about sexting seem to be changing too. The survey found that people who sexted more rated it as more “carefree and fun” and had higher beliefs that sexting was expected in their relationships.

(Sexting, for the purposes of the survey, was defined broadly as sending or receiving sexually suggestive or explicit content via text message, mainly using a mobile device, Stasko said.)

Of course, this doesn’t mean that every grownup out there is under the covers with their phone at night shooting off racy texts. These survey findings are preliminary, and come with big caveats, Stasko says. The findings may not be representative: Participants were recruited online and responded to a posting asking them to take a survey about sexting, so the sample could be skewed toward more seasoned sexters.

Don’t Forget Pleasure

The main goal of the study was to look at sexting through a new filter, Stasko said. The practice has historically been viewed as a risky activity among teens, associated with other sexual risk-taking (like having unprotected sex) and negative health outcomes, like sexually transmitted infections. She said she and her colleagues wanted to reevaluate sexting in a new light — as a potential positive force in a relationship and a way to potentially enhance open sexual communication. “There seems to be a missing discourse about pleasure,” Stasko said. “We wanted to talk not just about risk, but also introduce the idea that pleasure is a part of it.”

The takeaway, she said, is that when sexting is wanted by both parties, is can be a good thing. “The findings show a robust relationship between sexting and sexual and relationship satisfaction,” the study concludes.

Sexual ‘Simmering’

Aline P. Zoldbrod, Ph.D., a certified sex therapist in Lexington, Massachusetts, agrees that sexting can play an important role in adult relationships.

I asked her for her thoughts on the survey, and here’s what she wrote:

Sexting is not just for hookups, as a follow up to an interlude on sex chat roulette or for trolling on Craigslist. Sexting actually has some amazing benefits for people in ongoing relationships.  Continue reading

Calcium, Vitamin D For Osteoporosis: Are Recommendations Skewed By Conflicts Of Interest?

A photo illustration shows over-the-counter calcium supplements. (Bebeto Matthews/AP)

A photo illustration shows over-the-counter calcium supplements. (Bebeto Matthews/AP)

By Marina Renton
CommonHealth Intern

Might commercial influences be driving the widespread recommendation of calcium and vitamin D supplementation for the prevention and treatment of osteoporosis?

That’s the conclusion of an analysis published in the journal BMJ, written by Andrew Grey and Mark Bolland, endocrinologists and associate professors at the University of Auckland.

The analysis — strongly refuted by organizations that advocate for osteoporosis research — further complicates the already contentious issue of whether it’s a good idea to take the supplements and if so, at what dosage.

The Supplement Conundrum

Women over 50 are most likely to develop osteoporosis, a bone disease affecting millions of Americans that results in bone weakness and increased risk of fracture. Calcium and vitamin D supplements are widely recommended to prevent and treat the condition.

“But as we point out, the considerable body of randomized trial evidence doesn’t support that practice,” Grey, the study’s co-author, wrote in an email.  “We wondered why practice hasn’t changed to reflect the evidence.”

To promote bone health, over half of older Americans take calcium and vitamin D supplements, which can be prescribed by a doctor or purchased over the counter, the authors write.

The Institute of Medicine (IOM) recommends adults take in 1,000 mg of calcium per day (1,200 for adults 70+ and women 51-70) and 600 IU (international units) of vitamin D — 800 IU for the 70+ set.

As of 2013, the U.S. Preventive Services Task Force does not recommend daily calcium and vitamin D supplementation for non-institutionalized postmenopausal women to prevent fractures. This, they note, is not necessarily inconsistent with the IOM’s recommendations, which do not specifically discuss fracture prevention.

The supplements have been standard clinical practice in preventing or treating osteoporosis in older adults since the early 2000s. Since then, however, studies have emerged to contest their effectiveness, according to the paper. Continue reading

Medical Professionals Voice Their Feelings In The Abortion Discussion

Abortion became legal in America 42 years ago. And since then, the voices for and against the procedure have been strong and usually certain.

But there’s one group routinely missing from the debate: medical professionals who perform abortions — or decide not to.

Now, some OB-GYN residents from Brown University’s medical school are lending their voices to the conversation about abortion. They’ve written essays featured in the journal Obstetrics and Gynecology. One of their teachers, Janet Singer, the lead author of the article, helped start a support group for Brown residents after one particularly anguished conversation.

For more, visit this earlier CommonHealth conversation with Singer.

Related:

How Much Is That Eye Exam? Study Probes The Elusive Quest For Health Care Prices

Let’s say you’re having trouble reading this. The words are a little fuzzy. You might need glasses or a new prescription. So you call to make an appointment for an eye exam and ask how much the visit will cost. You’re going to pay for the appointment because your insurance plan has a deductible that you haven’t met.

Seems like a simple question, but be prepared: There’s a good chance you won’t get a simple answer.

“Sometimes people were downright rude,” says Barbara Anthony, senior fellow in health care at the Pioneer Institute. “Other times, staff said they weren’t allowed to give price information over the phone.” (Click the audio player above for Anthony’s interview with WBUR’s Bob Oakes.)

The Pioneer Institute called the offices of 96 dentists, ophthamologists, dermatologists and gastroenterologists (the doctors who perform colonoscopies) last month, asking for the price of five basic services.

0812_pioneer-prices

The results show that prices vary widely. But getting the information wasn’t easy. Continue reading

Related:

Personalized Medicine Distracts From Public Health, 2 Scholars Argue

Personalized medicine is all the rage. President Obama mentioned it in his State of The Union address this year and launched a multimillion-dollar initiative to push a personalized medicine agenda forward. The head of the National Institutes of Health has made it a priority. And really, what’s not to like about the general concept of medicine that’s personalized (it’s also called “precision medicine”) —  an approach that analyzes an individual’s genetics to make medical decisions about diagnosing and treating disease.

Well, two public health scholars argue in the New England Journal of Medicine that the current high-profile fawning over personalized medicine may be a “mistake” that diverts resources away from other public health efforts that could benefit far more people.

Ronald Bayer, Ph.D., a professor at Columbia University’s Mailman School of Public Health, and Dr. Sandro Galea, dean of the Boston University School of Public Health, write in the journal that the great enthusiasm around personalized medicine “derives from the assumption that precision medicine will contribute to clinical practice and thereby advance the health of the public.” But, they note, that may not be the case:

We suggest, however, that this enthusiasm is premature. “What is needed now” is quite different if one views the world from the perspective of the broad pattern of morbidity and mortality, if one is concerned about why the United States has sunk to the bottom of the list of comparable countries in terms of disease experience and life expectancy, or if one is troubled by the steep social gradient that characterizes who becomes sick and who dies. The burgeoning precision-medicine agenda is largely silent on these issues, focusing instead on detecting and curing disease at the individual level…

Without minimizing the possible gains to clinical care from greater realization of precision medicine’s promise, we worry that an unstinting focus on precision medicine by trusted spokespeople for health is a mistake — and a distraction from the goal of producing a healthier population.

I spoke with Dr. Galea about why he and Bayer targeted personalized medicine, in particular. Here, lightly edited, is what he said:

Personalized medicine has become this rallying cry around resource allocation in the health sciences. The president mentioned in the State of the Union. There is a White House precision medicine initiative, and it has dominated much of the NIH agenda…so it seems important to address it directly…

Nobody is arguing that precision medicine does’t have potential, but the number of people who you could point to who have actually benefited from it are very small. And so we are investing in potential — which is fine — but it’s a matter of calibrating our investment. Instead of investing in a untried, untested approach, we should be investing in things that we know make a difference…

We know that macroeconomic taxation on unhealthy substances, on alcohol, for example, can save thousands of lives, early childhood education can make an enormous difference, efforts to increase and improve vaccination rates, efforts to mitigate cycles of violence, one could go on and on….these could improve the lives of hundreds and thousands of people…

Our commentary was a call for a recalibration…I think there’s a feeling in the scientific community that the precision medicine agenda is becoming the overwhelming direction in which we are headed and that we would benefit from discussion and debate and a more careful calibration of the questions we ask and where we invest our resources.

Continue reading

State-Funded Lab At Harvard Medical Aims To Reinvent Drug Discovery

Jerry Lin and Sharon Wang at the not yet one-year-old Laboratory of Systems Pharmacology at Harvard Medical School. The two are studying the effects of cancer treatment drugs on the heart. (Robin Lubbock/WBUR)

Jerry Lin and Sharon Wang at the not yet one-year-old Laboratory of Systems Pharmacology at Harvard Medical School. The two are studying the effects of cancer treatment drugs on the heart. (Robin Lubbock/WBUR)

Jerry Lin makes a few adjustments on his microscope and grins.

“Wow, it’s beating,” Lin says as a white cell floating across an inky black background begins to pulse. “That’s cool.” A few colleagues, including Lin’s lab partner, Sharon Wang, murmur approvingly.

“We want to take a real-time video to look at the pattern of how cells beat over time,” Wang says, explaining this stage of the experiment.

Once Lin and Wang understand the morphology of these heart muscle cells, they’ll test how the cells respond to various cancer treatments.

“Later on, we can look at how that frequency of beating responds to different drugs,” Wang says.

The experiment is important, says lab director Peter Sorger, because heart problems can be a side effect of a drug that stops the spread of breast cancer.

“On the one hand, it’s a marvelous magic bullet,” Sorger says. “On the other hand, it does damage on its way in. So the purpose of these studies is to understand precisely why that happens.”

Sorger and his team at the Laboratory of Systems Pharmacology are focused on cancer and on analyzing the ways cancer drugs affect the whole body. They aim to reinvent the drug development process through this systems approach, by going much deeper than would scientists supervising a typical clinical trial and by establishing a new model of collaboration. Continue reading

Carly Simon And Family Point To Positive, Creative Side Of Dyslexia (Including Theirs)

Grammy award-winning musician Carly Simon struggled with dyslexia as a child. Here she is performing in California in 2012. (Frank Micelotta/Invsion/AP)

Grammy award-winning musician Carly Simon struggled with dyslexia as a child. Here she is performing in California in 2012. (Frank Micelotta/Invsion/AP)

Few parents are thrilled by the news that their child has dyslexia.

But increasingly, families are viewing the language processing disorder in a new light — not as a disability, but simply as a different way of perceiving the world. Indeed in some families, the dyslexic brain is viewed as having distinct advantages.

One celebrated Martha’s Vineyard family is trying to spread the word that a diagnosis of dyslexia doesn’t spell doom; on the contrary, it can lead to more creativity and out-of-the-box thinking.

Carly Simon, the Grammy award-winning musician, is now 70. But few people know that the accomplished singer and songwriter struggled with dyslexia, and a stutter, as a child.

“Being embarrassed at school is a terrible thing…when your peers are making fun of you because they can’t understand what wonderful whimsy your mind may be making up and going through,” she said recently. “While they’re just going 1-2-3-4-5-6-7-8-9-10, you’re going 1-2-4-5-7-8-9-3!”

Carly Simon in West Tisbury on a recent summer day (Rachel Zimmerman/WBUR)

Carly Simon in West Tisbury on a recent summer day (Rachel Zimmerman/WBUR)

‘Welcome To The Cool Club’

Still, Simon believes her dyslexia has a direct influence on how she makes music. She says her hit song “Anticipation,” for instance, “came down from the universe into my head and then out my mouth, so it bypassed the mind.”

These days, Simon lives in a lush compound on Martha’s Vineyard, where family members often spend the summer.

Dyslexia tends to run in families, and it runs in Simon’s. Her 38-year-old son Ben, a musician, has dyslexia. So does her 41-year-old daughter, Sally, an artist.

But the family wants to show their dyslexia can be a positive force — a challenge, absolutely, but also a catalyst for new ways of framing the world or problem-solving that might lead a child to become a famous artist or a successful entrepreneur.

Simon’s daughter Sally Taylor (whose father is musician James Taylor) vividly recalls the day, at age 10, when she learned she had dyslexia: She anxiously walked home with the diagnosis scrawled on a piece of paper in her hand.

“I just felt as though it was somehow the end of the world,” Taylor said in an interview. “[W]hen my mom saw my tears streaming down my face, she said, ‘What’s going on?’ and she opened this letter and saw that I was being diagnosed as having dyslexia and she just said, ‘Wow, this is awesome,’ like, ‘Congratulations, this is fantastic, and welcome to the family. We’re all dyslexic therefore we’re all going to understand each other better now…Welcome to the cool club,’ ”

Sally Taylor, the daughter of Carly Simon and James Taylor, describes herself as "an artist, mother, wife and dyslexic." (Courtesy of the family)

Sally Taylor, the daughter of Carly Simon and James Taylor, describes herself as “an artist, mother, wife and dyslexic.” (Courtesy of the family)

Simon speaks of her daughter’s struggles at school.

“I remember Sally reading ‘A Tree Grows in Brooklyn,’ ” Simon said. “She couldn’t read enough pages to get the assignment…she’d cry and feel different and feel stupid.”

Sally Taylor’s husband, Dean Bragonier, also dyslexic, was teased mercilessly in middle school for his painfully slow reading.

Now, he hopes to make things better for other kids with the disorder. Bragonier is swimming around Martha’s Vineyard — 50 nautical miles over several weeks — to raise money for his nonprofit, called NoticeAbility.

The end result will be a set of educational tools for middle school-aged kids with dyslexia. It’s an online, project-based curricula that doesn’t replace traditional classroom learning but seeks to enhance it, allowing each child to focus on one of four specific areas that they might be drawn to: entrepreneurial leadership, engineering, architecture and the arts.

In general, these are realms that some dyslexics have excelled at: think Whoopi Goldberg or cellphone pioneer Craig McCaw. Continue reading

Even Without Warren Buffett, IUDs Have Some Upside

(+mara/Flickr)

(+mara/Flickr)

Don’t miss this fantastic bit of reporting by Bloomberg’s Karen Weise that uncovered the juicy news that through a charitable foundation, Warren Buffett “has become the most influential supporter of research on IUDs.”

It turns out the Buffett-funded foundation paid for myriad studies of the once-shunned type of contraception that is now undergoing a renaissance of sorts. (Shunned, of course, due to the infamous Dalkon Shield, a type of intrauterine device eventually linked to complications, including infertility, infections, even death.)

Here & Now covered the story this week and posted these details:

First, an anonymous donor funded a multi-year study in St. Louis, finding that when given the choice, 75 percent of women chose IUDs or IUDs and hormonal implants. Further, the study revealed that IUDs had over a 99 percent effectiveness rate — in addition to being extremely safe. That study was written up in 50 medical journals, and was also used to promote extensive initiatives in Colorado and Iowa, where an anonymous donor funded low cost IUDs, as well as training programs for medical professionals on IUD use and counseling. In Colorado, the results showed the teen birth rate dropping by 40 percent. Finally, with the evidence of the IUD’s safety and effectiveness indisputable, the anonymous donor funded the development of a new, low-cost IUD known as Liletta.

Well, it turns out that the anonymous donor, in every case, was the Susan Thompson Buffett Foundation — a philanthropic organization funded by its founder billionaire Warren Buffett.

OK, so Buffett has long been a supporter of expanding access to contraception. Does that mean the IUD should not be given a second look? We’ve written a fair amount on this topic: Carey wrote about her own IUD here, and also offered a thoughtful, news-you-can-use post, “10 Reasons To Get An IUD, And 5 Downsides.” Continue reading

Want Happiness At 50? Be A Social Butterfly At 20, Keep Friends Close At 30

(Seranya Photography/Flickr)

(Seranya Photography/Flickr)

By Marina Renton
CommonHealth Intern

What’s the key to happiness in middle age? Be a social butterfly when you’re 20 and keep your friends close at 30. That’s according to a new study looking at the health impacts of social networks over decades.

Researchers at the University of Rochester found that because our social goals change over time, a high quantity of social interactions at age 20 and a high quality of interactions at age 30 was associated with better social and psychological outcomes around age 50. The study appears in the journal Psychology and Aging.

A Pleasant Interaction? 

The study was 30 years in the making and began in the ’70s when college students were asked to keep a kind of diary where they logged all their social interactions over a two-week period. They recorded the length of their interactions, the level of intimacy and pleasantness, among other things. The diary method, officially called the Rochester Interaction Record, was designed to capture spontaneous social activity (think pre-Twitter). It was also an attempt to minimize “recall bias.”

Study co-author Cheryl Carmichael, an assistant professor of psychology at Brooklyn College and the Graduate Center of the City University of New York, explained why the “diaries” were important: “If I asked somebody, ‘Hey, how’s your social life going these days?’ it could very easily be colored by whatever their morning or afternoon was like,” she said. For instance, your social life might seem bleak if you’ve just argued with your best friend, but if you’ve have it all written down, you can get a more accurate sense of a person’s true social life. Continue reading