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.
A December 2018 report from the American Academy of Pediatrics estimated that one in 40 U.S. kids suffer from autism today. 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.
Read on to learn about the causes, symptoms, and potential treatment options for autism.
In recent years, autism rates have jumped immensely. 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.
"Autism is primarily genetic, but something beyond genes is also involved," says pediatric neurologist Andrew Zimmerman, M.D., an associate professor of neurology at Johns Hopkins University School of Medicine and a research scientist at the Kennedy Krieger Institute in Baltimore. That something may be found in the womb.
Among the most intriguing areas of investigation is how environmental influences might "hijack" fetal genes and alter their effect on brain development. But tracking cause and effect in such a complex syndrome is difficult, and scientists expect that results will come slowly. "If you think of autism research as a game of Monopoly, we just passed Go," says toxicologist Isaac Pessah, Ph.D., director of the Children's Center for Environmental Health and Disease Prevention at the University of California, Davis.
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).
Some experts suspect that the stage is set for autism early in the first trimester, a suspicion rooted in the birth-defect epidemic caused by the morning-sickness remedy thalidomide in the 1960s. Of the babies born with severe limb abnormalities after their mothers took the drug, 5 percent also had autism, about 30 times the expected rate. This points to brain injury between 20 and 36 days after conception, when arms and legs are being formed. In contrast, an Ohio State University study found that women who'd suffered major stress, such as the death of a spouse, between the 24th and 28th weeks of pregnancy had a higher risk of delivering an autistic child.
Evidence also points to prenatal hormone levels: The more testosterone is present in the womb, the more likely a child is to have autism. And researchers at the Centers for Disease Control and Prevention have noted possible associations with obstetrical complications, including preterm delivery, low birth weight, and breech presentation of the baby.
Whenever it begins, the cascade of events that leads to autism probably starts with a genetic vulnerability, most likely with dysfunction in five to 15 genes. "With multiple dysfunctional genes, the child's system becomes susceptible to environmental insult," Pessah says.
One focus of current investigation is whether a maternal immune system gone awry could raise the risk of autism. "We've found increased numbers of persons with autoimmune diseases, such as rheumatoid arthritis and lupus, in the families we've studied," says Zimmerman. One study showed double the risk in children whose mothers suffered from psoriasis during pregnancy.
Zimmerman has also found an association with a mother's low levels of serotonin, a brain chemical known as a mood regulator and closely linked to depression. His study showed the mothers of autistic children having low levels of serotonin in the fluid that carries the chemical to the fetus, even though the women were not depressed. "A mother's levels are important to fetal brain growth," he says. "Mom's serotonin might be important to jump-start the fetus's production of its own."
Some scientists suspect that a mother's age could also be a risk factor. "We don't see teenage mothers or women in their early 20s bringing young autistic children to the clinic," says Zimmerman. "It's mostly mothers in their 30s and 40s." Advanced maternal age means more exposure to all kinds of toxins, viruses, and chemicals, he adds, "and the older they are, the more likely people are to develop autoimmune diseases; this is especially true for women."
The American Academy of Pediatrics (AAP) recommends that all kids be screened for autism 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 autism include:
Not smiling or responding to his name
Not pointing at things, not interacting or trying to share experiences with you
Symptoms of autism that develop later include:
Not cooing, babbling, or making gestures by 12 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."
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.
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."
Though research on the origins of autism isn't yet conclusive, enough is known about the effect of environmental factors on the fetal brain to offer moms-to-be some practical guidance:
Limit intake of contaminated fish Large studies have determined that thimerosol, the mercury-based preservative once used in childhood vaccines, is not connected with autism. The focus is now on a mother's intake of methylmercury, the organic form that's found in fish. Large predatory fish, such as tuna or swordfish, contain high levels of mercury; farmed seafood such as salmon may have higher levels of industrial chemicals, such as PCBs. "It's best to eat wild-caught and smaller fish lower on the food chain," says Pessah.
Minimize chemical exposures "There are chemicals around the house, such as sprays or air fresheners, that haven't been fully tested," Pessah says. Especially early on in pregnancy, don't use products you know little about, such as cleansers with complicated ingredients.
Give up cigarettes Mothers who smoke regularly during early pregnancy have a 40 percent increased risk of bearing an autistic child, according to Swedish researchers.
Avoid exposure to illnesses Make sure your immunizations are up-to-date; rubella (German measles) is particularly important, as prenatal exposure has been linked to autism.
Monitor autoimmune problems If you have autoimmunity issues, Zimmerman says, "consult with your obstetrician to make sure your condition is under control."
Stay as stress-free as possible "Major life stressors are more common during pregnancies with children later diagnosed as autistic," says Zimmerman. "However, even with stress and other risk factors, most mothers will have healthy pregnancies and their children will not develop autism."
To learn more about early signs of autism, possible treatments, and options for family support, please be sure to contact the following organizations: