When he turned 5 in October, Spike Robinson celebrated with his parents, three siblings, and a pink cake decorated with M&M's and lollipops. It was your standard birthday bash—except when it was time to sing. “Spike asked us to do it very slowly, and in a whisper,” recounts his mom, Shavon Brown-Robinson, who lives in Dania, FL. “And then he didn't want us to cut the cake. He didn't want it ruined.” He finally relented—and then burst into tears. “But he got over it and had a big slice,” says Brown-Robinson proudly.
For most kids, a birthday party is a milestone; for Spike, it was a miracle. Just a couple years before, he hated celebrations. “Whenever there was singing or clapping, he'd start screaming,” says Brown-Robinson. By the time Spike was 3, he was struggling to make conversation and walking on his toes. It was clear he was more than quirky. Brown-Robinson made an appointment for him to be evaluated at the Miami Children's Hospital Dan Marino Center.
Spike was indeed diagnosed with autism, also known as autism spectrum disorder (ASD), which ranges from mild social awkwardness to sensory problems (trouble dealing with certain sounds or textures) to an inability to talk or take care of oneself at all.
“I was so scared for that diagnosis,” Brown-Robinson confesses, “but the moment we got it, the doors started flying open.”
Before Spike was born, such a story might not have existed. In just the past five years, experts' thinking on autism has changed, myths have been busted, breakthroughs have been made, awareness has skyrocketed, and children are making the sort of rapid, meaningful progress that previously would have been unimaginable. In a couple years, we will learn something new that changes everything all over again. But what we know right now could change a child's life.
Autism is being called an “epidemic.”
The “A” word is enough to rattle any parent: Nearly two-thirds of young moms and dads are concerned their child will be diagnosed with ASD, according to a recent survey by the Florida Institute of Technology. It's no wonder, given the runaway rates. Whereas 1 in 150 kids was diagnosed with some form of autism five years ago, 1 in 50 kids is on the spectrum today. These rising rates inspired Bob Wright, co-founder of Autism Speaks, to say, “We have an epidemic on our hands…. It is imperative that the U.S. government steps up its commitment to helping people living with autism today.” Last November, the first congressional hearing on autism in ten years was held to determine what the federal response should be.
It's the mystery as much as the increasing prevalence that we fear: Autism has no certain cause or simple cure. It's such an enigma that it's symbolized in awareness campaigns by a puzzle piece. But that's changing. “In the past five years alone, millions of dollars have been spent on researching autism, and we now know a tremendous amount about it,” says Rebecca Landa, Ph.D., director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.
Autism only begins after birth.
Fifty years ago, autistic behavior was blamed on “refrigerator moms” who were too unfeeling to teach their children social skills. “Now we know there's a host of genes and environmental factors that are likely involved,” says Susan Hyman, M.D., professor of pediatrics at the University of Rochester Medical Center and chair of the American Academy of Pediatrics (AAP) subcommittee on autism.
More than 400 genes have so far been linked to autism risk. Some are passed through families—one in five children with an autistic sibling will have it, too. Others are gene mutations that form at conception. One possible contributor to autism's rise is that people are having babies later. The chance for gene glitches increases as parents—especially dads—age, explains Irva Hertz-Picciotto, Ph.D., an environmental epidemiologist at the MIND Institute at the University of California, Davis.
But delayed childbearing explains only a very small fraction of the rise in autism rates. Environmental factors may turn many autism genes “on” or “off,” says Dr. Hyman. “The best studies we have now point to things that babies are exposed to in the womb, when the brain is forming,” says Hertz-Picciotto. Living in areas with high levels of air pollution (such as near a freeway), having low levels of folic acid, being overweight or diabetic, and having a high fever during pregnancy all seem to up a woman's risk of having a child with autism.
There are simple things moms can do before and after pregnancy that may reduce risk. Hertz-Picciotto recommends taking 600 micrograms (mcg) of folic acid daily (most prenatal vitamins have it) before trying to conceive. Ask your ob-gyn what medication you can use to safely bring down a fever, and stock your medicine cabinet with it during pregnancy.
Babies can display signs of autism starting at around 6 months.
Autism is notoriously tricky to spot in infants, mainly because symptoms can mimic other developmental delays. But researchers have come up with some reliable red flags. Between 6 and 12 months, babies who go on to have autism are less likely to smile and vocalize back and forth with parents. “They aren't tuned in to people, but things,” says Fred Volkmar, M.D., director of the Child Study Center at Yale University. Certain motor-skill delays can be a tip-off even earlier. “We found that when six-month-olds were laid on their backs and pulled up to a sitting position, nine of ten who went on to have autism let their heads droop behind their shoulders,” says Landa.
Not all—or even most—babies who are stingy with smiles or have poor neck strength will go on to have autism. However, parents should note this possible sign of delay and mention it to their pediatrician so he can be more aware of other warning signs later. “It can also inspire parents to be more proactive about their child's development,” says Landa, who recommends parents take extra care to point at and label objects that interest their children, and read simple board books slowly and with excitement to help their children make connections about objects that they see outside of storytime (learning that the duck in a book is the same as a duck in a pond, for instance).
If your child shows signs at around 18 months, he should be evaluated.
Autism isn't usually formally diagnosed until around 18 months, when it's clearer what worrisome behavior persists. A lack of words or communicative gestures (like pointing), and repetitive behaviors such as sorting objects, are red flags at this stage. These are things your child's doctor should ask about at the 18-month checkup, when the AAP recommends pediatricians screen all kids for autism. “Once a child screens positive, he then needs to see a specialist for an evaluation,” says Geraldine Dawson, M.D., professor of psychiatry at the University of North Carolina and the chief science officer for Autism Speaks.
The problem is many well-meaning pediatricians tell parents to wait and see. “I knew something wasn't right from the start,” says Sarah Calzone, whose son, Stephen, now 6, has ASD. “He didn't smile, and everyday sounds like the crumpling of grocery bags were like nails on a chalkboard to him. His doctor kept saying boys were different.” When Stephen was 18 months, he'd scoop his Little People toys in a pile, scatter them, and repeat the cycle.“I begged the doctor, ‘Can you trust my mother's instinct on this one?’” Calzone, who lives in Stratford, CT, is grateful she pushed: She got the name of a local specialist who diagnosed autism, and thanks to treatments at the Yale Child Study Center, Stephen is doing well in public school. He loves soccer, says Calzone, “and has several true friends.”
“Parents should not ‘wait and see.’ The earlier that delays are identified, the sooner you can help your child,” says Landa. Starting at 16 months, you can go online and fill out the M-CHAT, a free, AAP-approved screening tool (m-chat.org). Make an appointment with your pediatrician if you're concerned with the results.
Therapy can't “rewire” the autistic brain.
Experts like Dr. Dawson and Landa think age 1 to 2 is prime time to start autism treatments. “The younger the brain is, the more changeable it is,” says Landa. In her clinics with toddlers, Landa teaches parents to imitate the way their children play and then help them learn to do new things with toys. Being a “play partner” in this way may help build communication circuits in the brain. Karin Hill credits play-partner sessions for helping her daughter Natalie, who was flagged as high-risk for ASD at age 1. “All Natalie wanted to do was tap the window. I thought, ‘How is this going to work?’ It was incredibly frustrating for a long time. But I started tapping the window, too,” says Hill, who lives in West Chester, PA. “All of a sudden, Natalie looked in my eyes and smiled. I felt like I could cry.”
For children 2 and older, Applied Behavioral Analysis (ABA) is the gold standard. In ABA, teachers and parents show kids how to, say, ask for a drink of water; when they do it, they get a reward, like a piece of candy, and are encouraged to do it again. One especially promising form of ABA is Pivotal Response Training (PRT), which rewards children with items related to an activity (a child who cares for a teddy bear might be given the bear). “After PRT, Stephen's speech therapist asked if we'd put him on medication,” says Calzone. “The social gains were that amazing.” If you have an autistic child over 2, look for an ABA or PRT therapist near you in the Resource Guide on autismspeaks.org.
Following Spike's diagnosis, Brown-Robinson turned her fear into action. She scouted out local schools and autism services. Through intensive one-on-one exchanges with teachers and special tools like picture cards, Spike started learning how to speak up, rather than act out, when he was uncomfortable. All of which led to the first happy birthday of his 5-year-old existence.