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.


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

Big Study Finds Autism Risk Higher If Teen Mom Or Parental Age Gap

In this 2014 photo, Colleen Jankovich works with her 11-year-old autistic son, Matthew, who is non-verbal and requires 24/7 care, in Omaha, Neb. (Nati Harnik/AP)

In this 2014 photo, Colleen Jankovich works with her 11-year-old autistic son, Matthew, who is non-verbal and requires 24/7 care, in Omaha, Neb. (Nati Harnik/AP)

This we already knew: That the children of older parents, particularly older fathers, are at heightened risk for autism. Now, a big new study just out in the journal Molecular Psychiatry, funded by Autism Speaks and encompassing more than 5 million children across five countries, adds some new age factors ito the risk equation. From the press release:

• Autism rates were 66 percent higher among children born to dads over 50 years of age than among those born to dads in their 20s. Autism rates were 28 percent higher when dads were in their 40s versus 20s.
• Autism rates were 15 percent higher in children born to mothers in their 40s, compared to those born to moms in their 20s.
• Autism rates were 18 percent higher among children born to teen moms than among those born to moms in their 20s.
• Autism rates rose still higher when both parents were older, in line with what one would expect if each parent’s age contributed to risk.
• Autism rates also rose with widening gaps between two parents’ ages. These rates were highest when dads were between 35 and 44 and their partners were 10 or more years younger. Conversely, rates were high when moms were in their 30s and their partners were 10 or more years younger.

The study notes that it seems clear why an older father might heighten autism risk: Sperm mutations accumulate over the years. But if older age heightens risk, why in the world should the autism rate be higher when mothers are in their teens? And why should a gap in age between parents matter?

Stay tuned for further research to follow these leads. These latest findings “suggest that multiple mechanisms are contributing to the association between parental age” and autism risk, the study’s authors write.

On Point: Adulthood With Autism, And The ‘Cliff’ As Kids Age Out Of Care

In this May 23, 2014 photo, Colleen Jankovich works with her 11-year-old autistic son, Matthew, who is non-verbal and requires 24/7 care, in Omaha. (AP)

In this May 23, 2014 photo, Colleen Jankovich works with her 11-year-old autistic son, Matthew, who is non-verbal and requires 24/7 care, in Omaha. (AP)

It’s not surprising that this week’s On Point hour on the “stark realities of autistic adulthood” drew a raft of calls from parents: Rates of diagnosed autism in America have risen dramatically in recent years, and now, a whole generation of autistic children are entering young adulthood.

As WBUR’s Martha Bebinger recently reported in a powerful piece titled “Troubled Future For Young Adults On Autism Spectrum,” this is a “pioneer generation” that often lacks supports in place.

Our colleagues at On Point have posted a write-up of the many calls from parents that their segment prompted, including these:

“This is the first time I’ve broken up about this,” caller Lisa from Nashville said. “I have a 21-year old daughter here in Nashville. She has moderately severe autism, severe speech impairment, intellectual disabilities.”

A backlog of applicants waiting for state support in Nashville has led Lisa to leave her state once her daughter ages out of the school-age care currently provided her.

“My plan is to relocate and to leave the state of Tennessee,” Lisa told us. “We’ll be able to provide housing for her, but how can a family that’s not making 300,000 and up provide that 24/7 care that she needs? There is no safety net for these people.”

Other callers, like Maisel in New Orleans, found school-age care for children with autism no better than the nonexistent care for adults. Continue reading

Pets As ‘Social Lubricant,’ Helping Kids With Autism Develop Assertiveness

(Onesharp/Flickr via Compfight)

(Onesharp/Flickr via Compfight)

If you’ve never considered your dog or cat part of your social network, maybe it’s time to start.

A new study from the University of Missouri-Columbia finds that pets of any kind in the home may help autistic children develop crucial social skills.

Gretchen Carlisle, research fellow at the Research Center for Human-Animal Interaction in the M-U College of Veterinary Medicine, found that pets serve as a “social lubricant,” making kids more likely to engage in behaviors such as introducing themselves, responding to other people’s questions or asking for more information.

While researchers have already found that dogs provide great assistance to children with autism, Carlisle explains that her study looks at the possible benefit of all types of pets. These pets also help the greater public interact with autistic kids in social settings. “When children with disabilities take their service dogs out in public,” adds Carlisle, “other kids stop and engage. Kids with autism don’t always readily engage with others, but if there’s a pet in the home that the child is bonded with and a visitor starts asking about the pet, the child may be more likely to respond.” Continue reading

Tackling Autism In Babies? Small Study An ‘Absolute Miracle,’ Says Mom

Megan says the experimental trial she participated in with her daughter Isabel was "an absolute miracle," transforming the child from a troubled baby who looked headed for autism to a typical, happy preschooler.

Megan says the experimental trial she participated in with her daughter Isabel was “an absolute miracle,” transforming the child from a troubled baby who looked headed for autism to a typical, happy preschooler.

Research out this week suggests that it’s never too early to begin therapy to treat some of the defining symptoms of autism. Karen Weintraub reports on the promising new findings in USA Today under the headline, “Study: Autism Signs In Babies Can Be Erased.”

Karen expands on her report here:

In a small pilot study — the first to look at starting therapy in babies this young — researchers at the University of California Davis’ MIND Institute, began treating 7 babies who showed symptoms likely to turn into autism later. By their third birthdays, five of the children no longer exhibited any symptoms of autism, and a sixth was diagnosed with mild autism.

Because the study was so small, and autism cannot reliably be diagnosed in infancy, the researchers stopped short of calling the treatment a breakthrough. But they said they will be following up with a larger study, which they hoped would confirm the results.

One mother involved in the trial described the treatment as “an absolute miracle” for her daughter, Isabel. The mother, Megan, asked not to be fully identified, but talked openly about the trial and its benefits for her family.

At nine months old, Isabel wouldn’t turn her head when someone walked into a room calling her name. She never babbled, Megan said. She was physically delayed in fine and gross motor skills, and didn’t seem to know how to play with toys. All those are signs commonly seen in children who go on to be diagnosed with autism.

Megan heard about the trial through her pediatrician and the family – including Isabel’s dad and her older brother – moved from the Seattle area to Sacramento, so they could participate in the study.

In 12 weekly sessions, lead researcher Sally Rogers coached Megan and her husband John as they played with baby Isabel. Where most children will smile or giggle when happy, Isabel’s facial expressions didn’t change much; where others might cry if scared by a loud sound, Isabel rarely reacted to anything in her environment. But Rogers showed them that Isabel might glance over quickly when she was interested or look at her hands when something was too loud or overwhelming – cues that Megan and John could take to do more or less of whatever they were doing.

Once they learned to “speak” Isabel’s language, Megan said she and John were able to react to her and engage with their baby for the first time. Eventually, through this interaction, Isabel learned that she could communicate – and have fun doing it. That primed her to learn even more, Megan said.

Megan said she and her husband would never have figured out what to do without the coaching. Continue reading

Governor Reviewing Mass. Bill That Would Expand Autism Supports

Gov. Deval Patrick, in an April 29 file photo (Josh Reynolds/AP)

Gov. Deval Patrick, in an April 29 file photo (Josh Reynolds/AP)

Many parents of children on the autism spectrum are celebrating passage of a bill that is among dozens already on Gov. Deval Patrick’s desk.

The bill would create a tax-free savings account for autism and disability care; would require Medicaid coverage for autism behavioral treatment; and would give thousands of residents with autism access to state disability services. Currently only those whose IQ is under 70 qualify.

Barbara L’Italien, with the advocacy group ARC of Massachusetts, has seen autism rates skyrocket since her son was diagnosed in 1990.

“It is a public health crisis,” she says. “It is something we need to wrap our arms around and be proactive about, and I think this legislation really attempts to do that.”

The costs of expanding Medicaid and disability services is not clear.

A spokeswoman says Patrick is reviewing the bill.

OBs: No Link Between Labor Induction And Autism

The nation’s most influential group of obstetrician-gynecologists concludes that there’s no connection between labor induction and autism. Earlier reports suggested that there’s was a possible link, but even that research, published in JAMA Pediatrics, was complicated and somewhat murky.



Here’s ACOG’s latest guidance on the matter, from the news release:

Current evidence does not support a conclusion that labor induction or augmentation causes autism spectrum disorder (ASD) in newborns, according to a new Committee Opinion released by the American College of Obstetricians and Gynecologists (the College).

While some studies have suggested an association between ASD and the use of oxytocin for labor induction or augmentation, available evidence is inconsistent and does not demonstrate causation, according to the opinion, which also found important limitations in study design and conflicting findings in existing research.

Given the potential consequences of limiting labor induction and augmentation, the College’s Committee on Obstetric Practice recommends against changes to existing guidance regarding counseling and indications for, and methods of, labor induction and augmentation.

“In obstetric practice, labor induction and augmentation play an essential role in protecting the health of some mothers and in promoting safe delivery of many babies,” said Jeffrey L. Ecker, MD. Dr. Ecker is chair of the Committee on Obstetric Practice, which developed the new Committee Opinion. “When compared with these benefits, the research we reviewed in assembling this Committee Opinion, relative to the utilization of oxytocin, had clear limitations. Because of this, these studies should not impact how obstetricians already safely and effectively use labor induction and augmentation when caring for their patients.” Continue reading

Autism: Awareness Helps, But What We Really Need Is Knowledge

The author's 15-year-old son, Sam, after an orchestra concert.

The author’s 15-year-old son, Sam, after an orchestra concert. (Courtesy)

By Ilyse Levine-Kanji
Guest contributor 

April is autism awareness month. Awareness is great. But what really frustrates me and other parents of children with autism isn’t a lack of awareness but rather how little is actually known about the disorder.

For instance, there is no explanation about why the number of autistic children is exploding. Less than a month ago, the Centers for Disease Control released updated data about the public health epidemic of autism. The CDC found that for children born in 2002, the prevalence of autism is 1 in 68, and 1 in 42 boys. This new prevalence finding is roughly 30% higher than just six years ago and roughly 120% higher than the CDC’s findings in 2002 (1 in 150).

I’m incredulous that people still argue that the increase in the prevalence of autism is only due to better diagnosis.  Do we really believe that doctors and teachers 20 years ago simply didn’t notice the devastating symptoms presented by children affected by autism?

Equally frustrating is the lack of knowledge about the capabilities and inner lives of people with autism. When my son Sam was diagnosed at 26 months in 2000, we were told that a primary hallmark of autism is social disinterest and the desire to be alone. Now that Sam is 15, we realize that couldn’t be further from the truth.

Within the first minute of meeting Sam, you know that he is different. He likes to walk up to people he doesn’t know and rapidly blurt out: “What-is-your-name-and-when-is-your-birthday?” He can say this in an unexpectedly loud voice, with his eyes averted and his back or side facing the person he’s addressing, and maybe standing too close to — or too far away from — his intended “conversation partner.” Once the person answers, Sam often simply moves away, without acknowledging the response or following up in any way, leaving the person confused about the unusual interaction.


While Sam’s social interactions are often quirky and unexpected, Sam has a deep desire to connect with others. He is always willing to go to the grocery store or run errands with me, primarily because he’s excited to see who we will run into. People joke that Sam acts like “the mayor,” greeting everyone he sees by name and with an extremely enthusiastic fist bump. (Again, we were told that people with autism have trouble recognizing others, which also hasn’t been true for Sam.)

What is accurate is that Sam has tremendous difficulty communicating. He speaks in full sentences, but it is often a struggle for him to communicate his thoughts. One way that Sam compensates for this difficulty is that he painstakingly plans out what he is going to say to someone before he sees him or her.

Sam has many rehearsed scripts in his head that he pulls out depending on the person. Continue reading

CDC: Autism Rate Up To 1 in 68 Kids, But Still No Why

A new CDC analysis of autism prevalence shows a nearly 30 percent jump in cases between 2008 and 2010: that means 1 out of every 68 eight-year-olds in the U.S. is diagnosed with the disorder.

But health officials still don’t agree on what’s driving the increase. Debate continues to rage over whether the increase in cases is due to changing definitions and greater awareness of autism spectrum disorders, or if it’s due to some environmental or other factor.

Karen Weintraub reports for USA Today:

…virtually every grade in every elementary school has at least one child with autism – a seemingly astonishing rise for a condition that was nearly unheard of a generation ago.

What’s still unknown is the driver of that increase. Many experts believe the rise is largely due to better awareness and diagnosis rather than a true increase in the number of children with the condition.

(Jesse Costa/WBUR)

(Jesse Costa/WBUR)

“We don’t know the extent those factors explain in terms of the increase, but we clearly know they do play a role,” said Coleen Boyle, director of the National Center on Birth Defects and Developmental Disabilities at the CDC. “Our system tells us what’s going on. It (only) gives us clues as to the why.”

The aging of parents is also known to be a factor; the chances of autism increase with the age of parents at conception.

“But that’s not the whole story is it?” said Robert Ring, chief science officer for Autism Speaks, a research and advocacy group. Whether something in the environment could be causing the uptick remains “the million-dollar question,” Ring said.

Despite their concern, experts said they were not surprised by the increase, because other data had suggested the numbers would continue to climb. In New Jersey, for instance, autism rates were 50% higher than in the rest of the nation in 2000, and they remained that much higher in 2010 – suggesting the national rates will continue to rise to catch up, said Walter Zahorodny, a psychologist who directs the New Jersey Autism Study. “To me it seems like autism prevalence can only get higher,” Continue reading

Autism Study Blames Chemical Switch Not ‘Flipped’ At Birth

By Karen Weintraub
Guest contributor

Are the seeds of autism laid at birth?

A new study published today in Science suggests that autism may result when a chemical switch in the brain doesn’t get flipped during delivery.

The brain chemical GABA excites brain activity in the fetus and then tamps down electrical signals in the more mature brain, with the change happening at or around birth. The new study by a group of French researchers suggests that the failure of GABA to make that switch can make the brain more vulnerable to autism.

“The bottom line is at least in rodents – and there is some reason to believe this might apply in humans – there are a couple of events which must take place very early on,” said lead researcher Yehezkel Ben-Ari, of the French Institut National de la Santé et de la Recherche Médicale, in Marseille. “If they don’t take place, autism evolves, and if you reduce somehow these events… the mice are much less autistic – implying that an early treatment might be very useful.”

(Jesse Costa/WBUR)

(Jesse Costa/WBUR)

Ben-Ari and his co-authors also think they have a solution: A drug they have patented that they believe can restore GABA’s functioning.

Their study was in rats and mice with a rodent-form of autism. The mice had the same genetic fluke that causes the disease Fragile X in people; the rats were exposed to valproic acid, an epilepsy drug known to increase the risk of autism when given to pregnant mothers.

Both the rats and mice showed fewer autistic behaviors when their pregnant mothers were given the drug bumetanide, a generic diuretic used to treat fluid retention that can come with high blood pressure and edema.

“Brain activity is like a scale between excitation and inhibition –there has to be a balance,” said Andrew Zimmerman, a pediatric neurologist at the University of Massachusetts Medical School in Worcester, who was not involved in the new study but wrote a commentary about it in Science. “We’ve known this switch takes place but we never were able to sense before the mechanism by which this happens.”

It’s too soon to tell whether bumetanide will be able to restore that balance to the brains of children with autism, but the researchers have started testing it in French and Spanish children with autism, ages 2-18, with results expected by the end of the year.

Ben-Ari said he doesn’t expect the drug to be a cure-all; behavioral therapy and other pharmaceuticals will likely still be needed to treat autism symptoms, because autism is so complex.

And he doesn’t want to give the drug before birth, as he did with the rodents, because it’s impossible to identify which newborns will go on to develop autism, and unethical to study the drug on healthy children.

But he does think that the variant of bumetanide he’s developed promises to help people across the autism spectrum, just as it helped rodents whose autism was caused by different triggers.

It’s that broad reach that most impressed doctors who work with kids on the autism spectrum.

“My excitement is this could be a common pathway,” said Dr. Gary Goldstein, president & CEO of the Kennedy Krieger Institute, a clinical and research center based in Baltimore. “We don’t have any medications for autism – nothing that treats the core symptoms.”

No single study can be considered definitive science, though, and this study, like all others, had its flaws. The French researchers looked only at a few autistic behaviors; it’s possible the mice and rats still retained some essential characteristics of autism. And of course, a mouse with induced autism is very different from a person with the condition, who may have difficulty reading social cues, communicating and avoiding repetitive behaviors.

“This is really interesting and important from a basic neuroscience perspective,” said neuroscientist Jeremy Veenstra-VanderWeele, an associate professor and autism expert at Vanderbilt University in Nashville, Tenn. “It remains to be seen whether this applies to a large group of kids with autism or whether this is directly impacting something that matters for the cause of autism.”

The research also needs to be repeated by scientists without a financial stake in the drug. Continue reading