Does being treated for infertility raise the risk that your child will have an autism spectrum disorder? A number of mothers I have interviewed have voiced this concern. Now two new studies–one that looks at in vitro fertilization and the other at ovulation-stimulating drugs like Clomid–suggest that it may be so. These are preliminary studies but provocative.
A study presented at the International Meeting for Autism Research in Philadelphia on May 19 found that autism was nearly twice as common among the children of women who were treated with Clomid-type drugs than women who did not suffer from infertility (4% vs 2%), and the link persisted even after researchers accounted for the women’s age.
A second paper presented at the conference by an Israeli team found an association between autism risk and in vitro fertilization, which also involves the use of drugs that stimulate ovulation. The study looked at 564 children with ASD, who had come to an autism center for in-depth evaluation. It found that 10.2% of the children were the product of IVF, much higher than the rate in the general population of Israel, which is 3.5%.
These studies are far from definitive. The drug treatment study, for example, while based on a large sample of nearly 4,000 nurses, drew its data from questionnaires rather than clinical records, so there was no way to confirm the history or timing of treatment for infertility or autism diagnosis. Nor did researchers have access to information on whether the affected children were born prematurely, whether they were twins or triplets, or whether they had low birth weights.
“Preterm delivery, low birth weight, twinning and maternal age are all associated with infertility treatment and they are all associated with the risk of autism. We need to understand how to tease these factors apart,” observes Lisa Croen, senior research scientist with Kaiser Permanente in Oakland, Calif., and director of its Autism Research Program, who was not involved in the study.
The IVF study was was even more preliminary and drawn from what researchers call “a sample of convenience.”
Still, it’s interesting to think about how IVF or ovulation promoting drugs might increase the risk of autism. Do the hormones used in fertility treatments cross the blood-brain barrier and affect fetal development? Might the the quality of the eggs the drugs stimulate to ripen be sub-par? Does the growth medium used in IVF procedures sometimes harm the fetus (there’s some evidence for this in animal studies.)? Could there be something about infertility itself that also somehow ups the odds for autism? No one has the answers at this point.
With more than 400 kinds of treatment available for autism, ranging from traditional behavioral therapy to restrictive diets to extreme options like chelation and hyperbaric oxygen, parents often find it hard to know what choices to make for a child on the spectrum. And even after a family commits to an intervention and sees progress, sometimes that progress stalls and it seems that another approach is called for.
Here are some guidelines on choosing a path from Claire LaZebnik, co-author with with Dr. Lynn Kern Koegel, of Overcoming Autism: Finding the Answers, Strategies and Hope That Can Transform a Child’s Life, and Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger’s.
To those parents who are just starting out, here’s my advice.
–Seek out the most reputable and researched behavioral interventions available in your area.
– Find therapists who have clear goals and who trained at a real clinic or university and whose manner of interacting with your child feels right to you.
– Work closely with your school and, if possible, mainstream your child with an aide.
– Look for slow and steady progress and give up on the idea of miracle cures–they’re not out there.
– Love your child for who he or she is and stop thinking there’s a different, better kid “trapped inside.”
–Hope for the best, survive the worst, find humor wherever you can.
Blue lights blazed at landmark buildings, bridges, museums and other notable spots in 25 U.S. cities and 15 countries to mark Autism Awareness Day on April 1 and 2, kicking off April as Autism Awareness month. The “Light It Up Blue” event is the project of the research and advocacy group Autism Speaks. Among the landmark locations in the U.S. were: the Empire State Building and the New York Stock Exchange, Fenway Park in Boston, Willis Tower (formerly Sears Tower) in Chicago, the Rock and Roll Hall of Fame in Cleveland, Los Angeles International Airport and the Ben Franklin Bridge in Philadelphia. The project included Niagara Falls on the U.S.-Canadian border and extended as far as Sri Lanka, Australia and Saudi Arabia, where Kingdom Tower was bathed in sapphire light. For more stunning images, check out the Autism Speaks Light it Up Blue website.
Temple Grandin is America’s best-known autistic person, and she’s about to become much more famous. On February 6, HBO debuts a feature film that stars Claire Danes as the gawky, socially impaired but brilliant animal scientist who, despite her disability—or actually because of it—has achieved enormous success in two arenas: as designer of humane cattle-handling facilities and an author and outspoken voice on autism. The force behind telling this story was executive producer Emily Gerson Saines, who is herself the mother of a child with autism.
Photo by Van Redin/HBO
Temple Grandin, tracks Grandin’s early years as a child who had no speech and very little connection to the world at age four, through her painful humiliations in school, to her ultimate triumph in cowboy country. Grandin says that two people were key to her success: her indominatable mother who simply refused accept the psychiatric view that her daughter would never speak and should be institutionalized, and her high school science teacher, who figured out how to ignite Temple’s curiosity and ambition. This interview with Grandin, now 62 and a longtime professor of animal science at Colorado State University, was conducted for TIME magazine’s website.
How close did Claire Danes come to matching your own memories of your early life?
It was like going into a strange time machine. She became me back in the ‘60s and 70’s.
Including that odd, rapid way of talking? You don’t quite sound like that now.
That’s the way I used to be. The thing about being autistic is that you gradually get better. You get less and less autistic-like, if you keep doing things and getting exposed to things that help you develop.
You have a photographic memory. So were you bothered by differences between real events and places and the way they were portrayed in the film?
They had an uncanny resemblance. Like my aunt’s ranch. They picked a house out in Texas that looks kind of like my aunt’s ranch in Arizona.
What kind of input did you have?
I had a lot of input into the cattle stuff. I wanted to make sure that it was really, really accurate. I liked how they recreated my projects. They built the dip vat [a pesticide bath for delousing cattle] off my original drawings from the 1970s. It was a working dip vat! The geek side of me really liked that.
What about the famous “squeeze machine” you built as a teenager to calm yourself down with a mechanical hug?
It was built exactly off my drawings.
The filmmakers tried to capture the visual way you think by showing flashes of images, as if every thought you have is a picture. Is that really how it is?
That’s exactly how I think. It’s just like Google for pictures. Go ahead and give me a word and I’ll tell you how it comes into my mind. Don’t give me a common word like house or car.
Okay, how about cactus?
I see the fake cactus they had in the movie when I was on the set. Now I see some cactuses out in Arizona. I see the little cactus plant in my house when I was in Arizona. Now I’m seeing a big feedyard in Texas that’s called Cactus. Now you see how I’m getting off the subject.
I understand that you’ve had your brain scanned with an MRI and it has an unusual structure that reflects all this visual activity.
I have this great, big, huge Internet trunkline into the visual cortex that’s twice the size of the [normal] controls. But I want to emphasize that not everyone on the autism spectrum is a visual thinker. Some are mathematic-patterns kinds of thinkers. Some are word people. People on the spectrum tend to be specialist thinkers—good at one thing and bad at others.
It seems like sexism was almost as much of an obstacle to you as autism in your early life.
Exactly. When I started out there were no women working in the feed yards, only as secretaries in the offices. The scene where they put bull testicles on my car? That happened. The scene where they said the cowboys’ wives didn’t want me there? That happened too.
What do you hope people will get from this film?
I hope they’ll get that somebody who is severely autistic really can achieve. Another thing I hope they get is the importance of the mentor teacher. I’m seeing a lot of smart, geeky kids and there’s no Dr. Carlock [a high school science teacher played by David Strathairn] around to mentor them. Actually, my teacher was Mr. Carlock. I noticed they’d made that mistake in the script, but I decided he deserved an honorary doctorate so I didn’t change it. He was just so important to my success. Now a lot of the science teachers are gone, and they got rid of the auto-shop classes and the welding classes. Those hands-on classes can get a lot of these kids turned on. I’m seeing more and more of the kids with Asperger’s [a milder form of autism] getting held back. They are defining themselves as Asperger’s first. I define myself as being a scientist first.
Julia Ormond plays your very determined mother. Is your mother alive and has she seen the film?
My mother is 82 years old. She’s seen the movie. She liked it. She was a little worried about it. The movie presents me when I was at my most super-weird.
Do you still use the squeeze machine?
It broke two years ago, and I never got around to fixing it. I’m into hugging people now.
Two new studies take a look at what appear to be unusually high concentrations of children with autism in certain parts of California.
The first study, published in the journal Autism Research by a team from the University of California, Davis, identified ten autism hotspots or clusters in the Los Angeles and San Francisco regions, where autism rates were twice as high as in surrounding areas. The lead author, Irva Hertz-Picciotto, said that the hotspots could probably be explained by the fact that parents had a higher level of education in these areas.
“In the U.S., the children of older, white and highly educated parents are more likely to receive a diagnosis of autism or autism spectrum disorder. For this reason, the clusters we found are probably not a result of a common environmental exposure. ” said Dr. Hertz-Picciotto.
Still, Hertz-Picciotto does not rule out the possibility that there might be environmental exposures associated with higher levels of education and plans to investigate that possibility.
The second study by a team from Columbia University was published this month in Health & Place. This study looked at clusters based on where children were born, as opposed to their current address. The team, led by sociologist Peter S. Bearman, identified a large cluster in the Los Angeles area where children had four times the risk of being diagnosed with autism than children born elsewhere in the state. The cluster was seen throughout the period studied: 1993-2000 and was associated with high property values. The authors suggest that the higher incidence could be due to “local environmental or social dynamics.”
Bottomline: Not clear from these studies that anything beyond social factors–higher income, higher education and therefore better access to treatment–explains the high concentration of autism cases in some parts of California.
Ten years ago, autism was rarely detected before ages 3 or 4. Now, thanks to growing awareness and widespread screening at 18 and 24 months, more children with autism are being identified when they are toddlers. But for all the emphasis on early detection, very little research exists on how to intervene effectively for children so young. A report in the current issue of Pediatrics helps fill in the gap, providing the first randomized, controlled trial — the most rigorous kind of study — of a comprehensive autism treatment that appears to work well for children as young as 18 months.
While none of the children in the study were “cured” of autism, those receiving two years of intensive therapy achieved major leaps in IQ score, big improvements in their use of language and significant gains in their ability to handle the kinds of everyday tasks necessary for a child to function at school and at play.
One of the most fascinating conditions known to psychiatry may be headed for obsolescence. Asperger’s Syndrome will likely be folded into the more general category of Autism Spectrum Disorders in the next edition of the DSM–psychiatry’s diagnostic manual. PDD-NOS will likely share its fate.
The reason? “Asperger’s means a lot of different things to different people. It’s confusing and not terribly useful, ” says Catherine Lord, who heads the Autism and Communication Disorders Centers at the University of Michigan and who serves on the work group that is revising the manual.
The change is part of a larger overhaul of psychiatric diagnosis that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity.
Read more about the proposed changes to how autism is diagnosed in my recent article in the New York Times.
A fascinating controversy has erupted in the autism community over a new video produced for Autism Speaks. The slickly produced video, written by songwriter Billy Mann and directed by Academy Award-winning director Alfonso Cuarón, carries an ominous voice-over declaring that “I am Autism… I know where you live… I work faster than pediatric AIDS, cancer and diabetes combined…And if you are happily married, I will make sure that your marriage fails…”
Some members of the autism self-advocacy community are furious over the tone of this video. “We don’t want to be portrayed as burdens or objects of fear and pity,” Ari Ne’eman, president of the Autistic Self-advocacy Network told me. “Apparently, should my parents divorce it’s all my fault,” says Ne’eman, a 21 year-old activist and college student with Asperger’s Syndrome.
Ne’eman’s group, which has about 15 chapters around the country, has organized rallies and protests around the country. These advocates argue that if Autism Speaks had more people on the spectrum on their board, their messages would be more sensitive to the individuals they seek to help and they might also devote more resources to improving services to people with autism–as opposed to basic research and genetic studies that may not pay off for years.
“Groups like Autism Speaks choose to use fear and stigma to raise money, but very little is going toward services, research into improved educational methodologies and things that have a practical impact on our lives,” Ne’eman charges.
Peter Bell, executive vice president of Autism Speaks, says the video got plenty of positive response from the autism community. “But we realized it did hurt a certain segment of the population, which is why we removed the video link from our website.”
The video, Bell said in an interview, is a personal expression by Mann and Cuarón, each of whom has a young child with autism. “They are at that stage of life where they are grieving and unsure what the future holds,” he said.
The video, which turns hopeful about halfway through its 3 minutes and 44 seconds, was created for a “World Focus on Autism” event that coincided with the opening of the U.N. General Assembly in September. “It was never intended to have a life beyond that event,” Bell said.
Bell admits that Autism Speaks does not have any individuals with autism serving on its board. “We are looking at adding individuals with autism to various advisory committees.”
Perhaps more effective and certainly funnier than the rallies and protests are the many YouTube parodies that skewer the Autism Speaks video, including “I am Socks” and “I am Autism Speaks“.
Today, the U.S. government updated its official estimate of autism prevalence to 1 out of 100 children, up from the 2007 estimate of 1 in 150. The figure is based both on the latest data collected by CDC’s intensive ADDM monitoring network and on a large, but less rigorous telephone survey of more than 70,000 parents conducted by the Health Resources and Services Administration (HRSA). The HRSA survey actually found a somewhat higher rate of 1 in 91, but phone surveys are bound to be less reliable than studies like the CDC’s, in which a considerable effort is made to confirm each diagnosis.
What’s striking is that so many different epidemiological surveys now converge on this one figure of 1 percent. This includes studies in England, Japan, Sweden and Canada. Most interesting is that a recent British study of autism in adults also came up with the 1 percent figure.
“It’s reassuring to scientists that no matter how you shake the bushes, you come up with this 1 percent,” Roy Richard Grinker of George Washington University told me this morning. “It provides what scientists call convergent validity.” Grinker himself is about to publish the first study of autism prevalence in South Korea and he says his findings are in line with these other studies.
It was interesting to see federal health officials scramble to manage the message conveyed by the new studies. They clearly did not want to raise new fears about an autism “epidemic.” In fact, the E word was completely avoided in an embargoed press conference held on Friday. Tom Insel of NIH, Ileana Arias of the CDC and Peter Van Dyke of HRSA made an obvious effort to say that scientists don’t know if the new numbers represent a genuine increase in autism or better detection, while also going out of their way to convey a sense of urgency about government efforts to address autism.
More details about the new studies can be found in my story for Time.com.
Among the many great mysteries of autism is this: Where are all the adults with the disorder? In California, for instance, about 80% of people identified as having an autism spectrum disorder (ASD) are 18 or under. Studies by the Centers for Disease Control and Protection (CDC) indicate that about 1 in 150 children in the U.S. have autism, but despite the fact that autism is by definition a lifelong condition, the agency doesn’t have any numbers for adults. Neither has anyone else. Until now.
On September 22, England’s National Health Service (NHS) released the first study of autism in the general adult population. The findings confirm the intuitive assumption: that ASD is just as common in adults as it is in children. Researchers at the University of Leicester, working with the NHS Information Center found that roughly 1 in 100 adults are on the spectrum–the same rate found for children in England, Japan, Canada and, for that matter, New Jersey.
This finding would also appear to contradict the commonplace idea that autism rates have exploded in the two decades. Researchers found no significant differences in autism prevalence among people they surveyed in their 20s, 30s, 40s, right up through their 70s. “This suggests that the factors that lead to developing autism appear to be constant,” said Dr. Terry Brugha, professor of psychiatry at the University of Leicester and lead author of the study. “I think what our survey suggests doesn’t go with the idea that the prevalence is rising.”
In England, where there is widespread suspicion that the childhood vaccine for measles, mumps and rubella has led to an explosion in autism cases, the study was hailed as part of a growing body of evidence that the vaccine, which was introduced there in 1988, is not to blame.
Brugha’s study was part of a larger national survey of psychiatric disorders among adults. In the first phase, researchers conducted 90-minute interviews with 7,461 people in 4,000 randomly selected British households; the interview included a 20-item questionnaire designed to screen for autism. (Sample yes-or-no questionnaire items: find it easy to make friends. I would rather go to a party than the library. I particularly enjoy reading fiction.) Based on their answers in the first phase, investigators further assessed 618 individuals, using a battery of psychiatric measures, including a state-of-the art autism diagnostic tool. (About 200 of these participants had been selected for scoring high on the autism screen; the rest had been selected to sample for other disorders.) In the second phase, researchers identified 19 adults with ASD. But had they been able to evaluate all 7,461 in the survey, they estimate that they would have found 72 cases, or roughly 1% of the total.
One limitation of the study is its relatively small size, says Brugha. Being the first of its kind, it also needs to be confirmed by other studies. Another issue, notes Richard Roy Grinker, an autism researcher and professor of anthropology at George Washington University, who was not involved in the work, is that the study looked only at adults in the general population. Had it included people living in institutions, which is where the most severely autistic adults are likely to be, the estimated rate of ASD may have been even higher than 1%.
Michael Rosanoff, an epidemiology specialist with Autism Speaks, emphasizes that “the small sample size for estimating prevalence requires caution about interpreting this finding on a population-based scale.”
Despite its limits, the new study does begin to fill in the profile of high-functioning adults who are on the spectrum but living in an ordinary home in the community. Researchers found that they are primarily male and unmarried: about 1.8% of men surveyed were on the spectrum –among never-married, single men, an estimated 4.5% had ASD– compared with just 0.2% of women. (Brugha notes, however, that autism screening tools may be poorly adapted for identifying autism in adult females.) People with autism are less likely than average to have finished college but about as likely to be employed. Only 0.2% of adults who had finished college were on the spectrum, but the rate was 10 times higher among those without a high school degree. And, in contrast with people with depression or anxiety disorders, autistic adults were unlikely be receiving any sort of mental health services.
Why has it taken so long to do a study of this sort? For one thing, you need an enormous sample size –at an enormous cost–to find significant numbers of people with autism. Second, it’s more difficult to detect autism in adults than in children. Children often have glaring symptoms, like delays in learning to speak, extreme social withdrawal and terrible tantrums. Less is known about how autism looks in adults. “To diagnose autism, you need to have good information on people’s behavior,” says Brugha. “It’s much more straightforward to get that with children because you’ve got parents and teachers as observers. Adults with autism are not the best people to describe their own behavior.”
The Irish-born psychiatrist and epidemiologist says he sees a lot of adults with ASD in his own clinical practice, and “they have so much difficulty saying what their own difficulties are.” He suspects that this lack of insight and inability to communicate emotional issues also reduces their ability to seek professional help.
Efforts to identify and help adults with ASD have lagged far behind efforts to help children. And yet, Brugha notes that just having an ASD diagnosis to explain their troubles can be enormously beneficial to his adult patients, who often struggle with relationships at home and at work because of difficulty reading social cues. “Once you help them to understand that they are not the only person on the planet who is like this, and help their families understand, it can be a breakthrough. People also have a better chance of staying in their work, if their employer understands why they are the way they are.” Moreover, Brugha says it is not expensive to provide services to adults with relatively mild autism. “The cost of treating a child with autism is phenomenally high. We are not talking about this. We are talking about support, helping people adapt their lives” with help from a social worker.
Grinker, who has a teenage daughter with autism, finds the study to be in some ways comforting. “I would think that a study like this would encourage people that children with autism could grow up and have futures that are meaningful and that they are not going to end up in institutions.”
Note: This story was published on Time.com