With our 10-month-old son sitting on her lap, my wife Brandy fields a list of standard questions from our pediatrician. How is he eating? How is he sleeping? The bespectacled doctor listens, making notes on her clipboard. Does he respond to his own name? No, Brandy says. The doctor slowly looks up, eyebrows raised, obviously concerned. "Oh, but it's okay," Brandy says. "I think he just ignores me."
The stone-faced statues on Easter Island. The crop circles in rural Swiss wheat fields. Houdini escaping shackles in a water tank.
There are mysteries -- and then there is autism. How can something with such overwhelming public awareness be so inexplicable? You would be hard pressed to find an expectant mom or dad who hasn't heard the "A" word, yet the most well educated and experienced physicians, clinical psychologists and behavioral analysts in the field of autism will tell you they have no clear explanation for its cause. They don't know why boys are four times as likely as girls to be on the spectrum, or why prevalence of autism in children in Minnesota is three times higher than it is in Tennessee.
Perhaps we should start with what we do know: the incidence of autism is increasing dramatically. Approximately 1 in every 91 children ages 3 to 17 was on the autism spectrum in 2007, according to the American Academy of Pediatrics. Five years earlier, that figure was 1 in 150. Four years before that, it was 1 in 1,000.
With these skyrocketing stats, and a dearth of answers from experts, autism has become a Gen Y boogie monster. As a result, parents are desperate for information, and there's plenty of it, both factual and bogus. Google "autism," and you'll get 18.5 million search results (that's about the same number of results as "premature birth" and "colic" combined). Search the topic in the books section on Amazon, and you'll find 5,700-plus titles including Jenny McCarthy's Louder Than Words: A Mother's Journey in Healing Autism. Among the book's customer reviews are countless armchair theories for autism's cause: genetics, vaccinations, pesticides, industrial contaminants, and America's increasing reliance on prescription drugs.
Since finding a cause has proved problematic, there is a growing emphasis on diagnosing and treating children as early as possible. James Coplan, M.D., is a physician who is board certified in both developmental-behavioral pediatrics and neurodevelopment disabilities. He is also the author of Making Sense of Autistic Spectrum Disorders, a guidebook aimed at making parents expert advocates for children with autism spectrum disorders (ASD).
"I've seen videos of 3-month-olds who will turn into 2-year-olds with autism," says Dr. Coplan. "The mom is trying to elicit eye contact, and the child is staring off into space. Mom will tell me, 'I knew there was something wrong with him from the day he was born. I breastfed him and he never looked up at me.'"
Our understanding of autism remains in its infancy, as is the movement to diagnose and treat children in that same stage. These were things I was not really aware of, as an editor or a father.
the spectrum: what it is, and what to look for
I'm trying to hold him, but he's squirming. The airport lounge is packed with people, and I can feel all eyes on me: the dad who cannot appease his toddler. Brandy sees me struggling, and comes up with a quick fix. She flips over the stroller. She places Jackson next to it. He begins to spin one of the wheels with his hand. He keeps spinning it. Over and over and over. He's completely absorbed. I look at Brandy quizzically. She shrugs.
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ASD are a group of neurodevelopmental disabilities that can cause a number of social, behavioral and communication challenges, ranging from mild to severe. In lieu of more clinical jargon, an analogy may be appropriate here: Imagine a highway, long and straight, that disappears into a horizon beset with storm clouds. The highway's earliest exit leads to something relatively mild, like sensory integration disorder (a child being overly sensitive to the texture of his clothes, or the sound of a dishwasher). Continue down the highway toward the storm, and the exits lead to more serious issues like Asperger's syndrome, where children have trouble with social interaction (ignoring everyone at a Mommy & Me class) and show intense fixations on repetitive patterns or behaviors (staring at a spinning wheel, or running laps around the coffee table). And lastly, the farthest exit underneath those dark clouds lead to a severe case of autism, such as a child who acts deaf and mute, but physically has the capability to hear and speak.
Considering our troubled history with understanding autism, it's amazing we know as much as we do. It wasn't until the enactment of the Individuals with Disabilities Education Act in 1990 that autism was officially observed as its own impairment; previously, children, teenagers and adults with autism were labeled as emotionally disturbed or mentally retarded. Finding medical professionals to serve this demographic was equally problematic. For 18 years, Dr. Coplan was by his own account the only university-based neurodevelopmental pediatrician in central upstate New York, an area with a population of 2.5 million.
"The first thing to bear in mind is that the medical world didn't
separate autism from childhood psychosis until the early 1980s,"
says Dr. Coplan. "During that time a lot of people with autism
simply fell through the cracks of society. Many were unemployed,
living in poverty or incarcerated."
In 2010, it's a different ballgame. Society's awareness of autism is at an all-time high, and autism experts are more and more capable of identifying problem behaviors early in a child's development. According to Dr. Coplan, the "big three" help him diagnose spectrum disorders in babies and toddlers.
The first is social engagibility. "By 3 months, the child should recognize mom and dad's faces. He should be making eye contact by 3 months, and engaging in patty-cake and peek-a-boo by 9 months." The second is social reciprocity, which should be present by the first birthday. "Can you have an interaction with your baby?" Dr. Coplan asks. "Can he copy and imitate you? There should be a back-and-forth sharing of smiles and sounds." Last is the use of language as a tool for social communication. "One of the things I hear a lot from parents is, 'My child talks but he doesn't communicate.'" A lack of babbling or cooing by 6 months can be an early sign of ASD, warns Dr. Coplan. A 1-year-old should be using words to get action: milk, ball, cookie. He adds that prosody, or the rhythm of speech, is a major indicator. The melody of a toddler's speech should be natural, not robotic or prone to loud-soft dynamics.
Autism expert William Frea, Ph.D., is co-CEO and chief clinical officer of Autism Spectrum Therapies (AST), a facility in Culver City, California that creates individually tailored treatment programs for children and families. AST offers in-home assessments of babies who may be at risk of ASD beginning at 6 months.
"Language, play and social behavior are critical at this early age," says Frea. "Parents should see their babies making intense eye contact, cuddling, reaching out with their arms, and pointing."
what causes ASD?
When we carried the first few boxes into our new house, the carnival-like fumigation tent had only been off for a couple days. We had termites, and tent fumigation -- which uses a concoction of lethal chemicals -- is standard procedure. Five years later, laying in bed in a different home, Brandy brings it up. "We got pregnant with Jackson right after we moved in," she says. "I've always wondered about that."
Getting to the root cause -- or causes -- of autism is an ongoing process, but little is known. One of the most promising areas of study is genetics. For example, siblings of a child with ASD face a 10 percent risk of having ASD themselves. Researchers have also found that if one member of a pair of identical twins has autism, the other twin has an 80 to 90 percent chance of being on the spectrum. In other words, a look at the family can be a useful bellwether. "I've gotten letters from mothers who say, 'After you gave my son a diagnosis, we looked really closely at our family, and discovered that we have an older relative who is on the spectrum,'" notes Dr. Coplan.
Of all the potential causes, none has been more controversial than vaccinations. While McCarthy's 2007 book gave the issue a celebrity spotlight, the theory actually dates back to a 1998 study published in the British journal The Lancet. Authored by Andrew Wakefield and 12 of his associates, the paper stated that, "12 children were referred to the pediatric gastroenterology unit with a history of normal development followed by a loss of acquired skills, including language, together with diarrhea and abdominal pain ... onset of behavioral symptoms was associated by the parents, with measles, mumps, and rubella (MMR) vaccinations in eight of the 12 children."
Six years later, 10 of Wakefield's co-authors offered a retraction. Then last August, Wakefield and the two remaining co-authors were charged by Great Britain's General Medical Council for conduct that was "dishonest and irresponsible." Apparently, five of Wakefield's 12 subjects were already suing the manufacturer of the MMR vaccine, and their attorney had retained Wakefield and provided him with financial support for his work.
Perhaps more important to settling the MMR vaccine-autism debate are the studies that have been conducted since Wakefield's paper was published. Says Frea: "Because of the controversy and level of fear, it has pushed science to have very strong research." Countries including the United States, England, Japan, Denmark, Canada and Finland have conducted studies with the participation of approximately 1.9 million children, and none have found a connection between autism and the MMR vaccine. The U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Institutes of Health and the AAP all recommend vaccines as safe and effective.
"For parents of children with autism, until they've turned over every stone, they're going to look wherever they can," says Mary Anne Jackson, M.D., chief of the pediatric infectious diseases section at Children's Mercy Hospitals and Clinics in Kansas City, Missouri, and co-investigator for the Vaccine Education and Treatment Unit, which is sponsored by the National Institutes of Health. "Health care providers need to say they've looked at vaccines. We've turned over that stone, and there is no data to support the claim." But it seems the public either isn't aware of this information, or doesn't believe it. According to a recent survey in Pediatrics, the journal of the American Academy of Pediatrics, more than half of the parents expressed concerns that vaccines cause adverse effects.
While Frea doesn't believe vaccines are connected to autism, he worries about other possible triggers. "Right now, we've got a lot of speculation [about causes other than vaccines] without good research," he says. "To look at how the numbers have increased, it seems there's something in our environment that's causing it, and it appears to be getting worse."
early assessment and treatment
It's been 20 minutes since the behavioral psychologist asked to be alone with Jackson. Brandy and I hold hands, flip through magazines, hold hands again. The doctor invites us back into her office. She is very complimentary of Jackson, now 5 years old, but points out some concerns. The word "spectrum" comes up, but the doctor isn't comfortable with it. "Let's see where we are in six months," she says.
A baby that shows early signs of ASD doesn't necessarily mean a diagnosis is eminent. "I liken it to a tall ship coming around the curvature of the earth," Dr. Coplan explains. "Right now, I can see the mast, but I can't see the rest of the ship. Does it have cannons? Are they flying the Jolly Roger? In other words, let's take our time and assess. If I have concerns, it's better to err on the side of caution and meet periodically."
At Autism Spectrum Therapies, a baby or toddler showing early signs of ASD would warrant an in-home assessment, not a diagnosis. "We go into the home and observe. What drawer does the baby go into? What toys does he play with? What we often see early on is parents struggling to capture the child's attention. What we try to do is engage the child in a play-based environment, and reward that attention with things the child likes." At the outset of these evaluations, many of the parents share the same sentiment: my baby simply isn't interested in me, so I leave him alone. But treatment often means providing parents with the tools to create more beneficial interaction. "We create routines and roadmaps for each family," says Frea. "Nine times out of 10 things change drastically."
There is no question that Jackson at 3 showed more signs of ASD than Jackson today, at 6. And we're not alone. Another study highlighted in Pediatrics focused on 61 children aged 14 to 35 months who were on the spectrum. Two years after their initial diagnosis, 20 percent of those children no longer met the ASD criteria, which suggests that either the children are improving or were misdiagnosed from the start. So can a child "develop" out of the spectrum? "You've just asked the 64 thousand dollar question: How much of a child's improvement over time is due to the natural history of the condition, and how much is due to intervention?" Dr. Coplan says. "There are no decent studies to address this question." Unlike leukemia or cancer, "treatment for ASD is not based on the scientific method, so there is no data."
With so many answers left to discover, autism is in the midst of a tidal shift, and more research is under way. By the time you read this, a new study could shatter much of what we know about ASD. I, for one, am eager to learn more about this mystery. After all, I'm not just searching for answers for a story. I'm searching them out for my son.
© 2012 The Parenting Group. All rights reserved.