In the beginning, Lance seemed like a typical baby. He smiled, sat up, and walked. "He could say about five or six words, like 'mama' and 'dada,'" says his mother, Stacy Strombeck-Goodrich. "He hit all of his milestones right on time."
So the Gilbert, Arizona, mom was perplexed when at about 18 months, Lance, now 3 1/2, started sliding backward. "He got really quiet. Not just no words, but no babbling, no sounds at all." Other skills evaporated too. "He wasn't pointing or waving bye-bye anymore," she says. When Lance stopped responding to his name, his mom had his hearing checked. It was fine. Strombeck-Goodrich was stumped -- until she saw a TV report that made her wonder if Lance was autistic. A specialist soon confirmed Lance's diagnosis. "To hear somebody actually say 'autism' was shocking," Strombeck-Goodrich says.
Lance is among the 1 in 150 U.S. kids who will be diagnosed with autism by age 8. What does being autistic mean? Is there a cure? Here, answers to tough questions.
What is Autism?
More accurately called autism spectrum disorders for its wide range of symptoms and degrees of severity, autism is a grab bag of developmental problems affecting a child's ability to communicate and interact with others. It also causes kids to engage in repetitive behaviors, such as hand slapping and rocking. And sometimes autistic children become fixated on certain objects for hours, like the wheels of a toy car. A child can have many delays in the areas of communication, social interaction, and repetitive behavior -- or a few quirks that are considered autistic but don't add up to a full-blown diagnosis. Some kids show signs well before 12 months; others appear to develop normally, then suddenly regress at around 18 to 24 months. And for reasons unknown, autism is four times more common in boys.
Over the past two decades, autism rates have jumped tenfold. But no one is certain what's behind the spike. It's possible that more cases are being diagnosed because experts better understand autism. And we do know there's a strong genetic component -- kids who have an autistic sibling have a 15 to 20 percent higher risk of developing it. Among identical twins, if one has autism, there's a 90 percent chance the other will also be autistic.
Meanwhile, one factor that's been thoroughly disproven is any connection with vaccines. Numerous studies show that unvaccinated kids don't have a lower risk for autism than those given vaccines (with or without the preservative thimerosal).
Autism & Early Screening
The American Academy of Pediatrics (AAP) recommends that all kids be screened at 18 months and at 24 months. But some kids show autistic signs as early as 9 months.
If you're concerned about your baby's development, discuss it with your doctor immediately and ask to set up an early evaluation. Don't wait. There's a small window before age 4 or 5 when a child's brain is still developing. During this time, early interventions can really make a difference in teaching kids how to communicate, connect and play with others, and reduce eccentric behaviors marking them as autistic.
Very early signs of trouble include:
- Not smiling or responding to his name
- Not pointing at things, not interacting or trying to share experiences with you
Later red flags include:
- Not cooing, babbling, or making gestures by 12 months
- Not speaking any words by 16 months
- Not speaking any words by 16 months
- Not understanding feelings
- Losing language or skills at any time
- Playing inappropriately with toys, like making the same movement over and over
- Focusing on your mouth versus your eyes when you're talking
- Repetitive behaviors such as spinning, rocking, and hand slapping
If your pediatrician brushes your concerns aside, get another opinion or two. That's what Janel Schwartz, of Atlanta, did when her doctor said her daughter was fine. "He told me I was being neurotic," she says. "But I worried that she wasn't talking like other kids do at age 2." A year later, after seeing several specialists, Perri was diagnosed as autistic.
There's an important lesson here: if you feel something's not right, as much as you want to hear that nothing's wrong, insist on getting an autism screening as soon as possible. Even so, if your pediatrician says your child needs further evaluation, that doesn't necessarily mean your child is autistic. "There are a lot of false positives," says Wayne Fisher, PhD, an autism expert at the University of Nebraska Medical Center, in Omaha. "About half of the kids referred to us for autism aren't autistic and instead have a different condition such as ADHD."
Therapies to Try
While you're waiting for a definitive diagnosis (this can take up to 6 months), the AAP recommends starting early intervention in order to take advantage of that window of opportunity before age 5. You can get a referral for early intervention while you're waiting for a diagnosis. At the very least, your child will need 15 to 20 hours of therapy weekly; 25 to 40 is better. Visit nectac.org for help finding local programs.
How much does all this cost? The price of treatment ranges from $40 to $250 an hour, and a family can spend more than $70,000 annually in services not covered by the government or insurance. Many states provide one to three hours of weekly therapy for kids up to age 3 (in some states up to age 5). And in 15 states, some treatment costs -- ranging from $20,000 to $50,000 annually -- are covered by insurance. To bring costs down, parents can learn to perform some therapy at home.
Intervention typically includes speech and occupational therapy, along with an additional therapy like Applied Behavioral Analysis. Recommended by the AAP, it teaches kids to communicate, play, and learn.
There are other therapy add-ons; contact an autism organization to determine which services your child needs. The Picture Exchange Communication System uses picture cards to build vocabulary and communication skills. Floortime and Relationship Development Intervention therapies both teach social interaction skills. And TEACCH is a school-based program.
Is Autism Curable?
Autism is a genetic disorder, so a child with autism will be autistic for life. But some kids -- maybe 15 to 20 percent -- who start intensive early intervention by age 3 or 4 eventually lose their diagnosis and "fall off the spectrum." What does that mean? For Julie Cole of Ontario, Canada, it means that her son, Mack, 9, who was nonverbal at age 3, now has friends, is a B student, and, for the most part, blends in with his peers.
"Some kids develop to the point where they have normal IQ scores and are on par with their peers academically," Dr. Fisher says. "But even kids who do really well may still have some signs, although they may no longer meet the diagnostic criteria."
Unfortunately, there's no way to determine which child will be in that 15 to 20 percent. Strombeck-Goodrich is living with that uncertainty now. "I didn't know if we'd ever hear Lance speak again," she says. She's been using the picture-card system, and Lance recently started talking. "He had a language explosion," Strombeck-Goodrich gushes. "Now he says 25 to 30 words. We're crazy excited."
For More Information
To learn more about early signs of autism, possible treatments, and options for family support, please be sure to contact the following organizations:
Autism Society of America
CDC Autism Information Center
Interactive Autism Network
Originally published in the November 2009 issue of American Baby magazine.
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