Autism: What Every Parent Needs To Know
You hear about autism quite a bit — and you probably even know someone with the disorder — but what does it mean exactly? Could your child be at risk? And if so, what then? We’ve got answers.
Autism seems to be getting more common. According to the Centers for Disease Control and Prevention (CDC), an estimated 1 in 68 children in the US have an autism spectrum disorder (ASD). Some children are profoundly affected; they can’t speak, rarely (if ever) look other people in the eye and frequently exhibit repetitive behaviors. Other children with an ASD look and act so typical that, at first glance, you’d never know anything was wrong.
Because autism includes such a vast array of behaviors and abilities, it can be hard to get a grip on what, exactly, an ASD is. But despite their range of abilities, all kids with an ASD share certain challenges. “Autism is a developmental disorder in which the child has problems with communication, social skills and unusual behaviors,” says Georgina Peacock, MD, MPH, medical officer and developmental-behavioral pediatrician with the Prevention Research Branch in the CDC’s National Center on Birth Defects and Developmental Disabilities. Children with an ASD may speak late (or not at all). They have a hard time relating to other people. And they repeat certain behaviors, like rocking or hand flapping, over and over.
No one knows what causes autism or why there’s been a spike in the number of kids with an autism diagnosis in recent years. Most researchers suspect a genetic link. Kids whose siblings have an ASD are more likely to have an ASD, and among identical twins, studies have shown that if one child has an ASD, then the other is affected about 60 to 96 percent of the time.
It’s important to know that vaccines do not cause autism. A well-publicized article claimed a link between vaccination and autism, but that article was found to contain falsified data and has since been debunked. No other studies have replicated the results. So you can rest assured that it’s okay to follow your child’s pediatrician’s recommended vaccine schedule.
Some suggest that autism could be triggered by environmental causes; others believe certain areas are more likely to have kids with autism because they’re affluent neighborhoods — and people with higher incomes are more likely to have good medical care and get diagnosed. Not all the suggested connections out there have been proven.
Signs and Symptoms
Autism is typically diagnosed when kids are about four or five years old, but many parents report seeing worrisome symptoms before three years of age. About one-third of parents noticed symptoms by one year of age; 80 percent of parents were sure something was “off” by the time their child turned two.
Children with an ASD may develop according to schedule in the first few months or years of life but eventually fall behind on certain developmental milestones, such as talking. That’s why pediatricians and autism experts encourage parents to become familiar with the typical developmental milestones and to seek medical advice if baby doesn’t hit them.
“We look for cooing, babbling and gestures by one year of age,” says David Perlstein, MD, medical director and vice chair of pediatrics at St. Barnabas Hospital in Bronx, New York. “By 15 to 16 months, a child should be able to say some single words, and by two years, they should have some couple-word phrases.”
Peacock says it’s a good idea to keep track of your child’s developmental milestones so you know if and when he falls behind. She recommends “ Milestone Moments,” a CDC-developed pamphlet that’s available on the CDC’s website.
“You can check off the milestone your child hits, and if there are some you’re concerned about, you can take the booklet along to a well-child check and talk with your child’s pediatrician about your concerns,” Peacock says.
Other early symptoms of ASD include:
• Not pointing at or showing interest in objects by 14 months
• Repeating words and phrases over and over
• Avoidance of eye contact
• Becoming easily upset by minor changes
• Hand flapping, body rocking or other repetitive motions
• Obsessive interests
• Not playing “pretend” games by 18 months
• Unusual reactions to sights, sounds, tastes, smells and physical sensations
Also know that baby’s pediatrician will likely be on the lookout for autism symptoms. “The American Academy of Pediatrics recommends screening all kids for autism at 18 months,” Perlstein says. Most docs use a tool called the Checklist for Autism in Toddlers. If they notice any troubling symptoms, they may ask you to carefully observe your child’s behavior over the next few weeks.
“I’ll give them a diary so they can track their child’s behavior, or I’ll tell them, if they have a smartphone, to videotape the child doing things,” Perlstein says. And red flags may mean follow-up treatment.
Diagnosis and Early Intervention
If your child has any type of developmental delay, your pediatrician will probably refer your child for treatment — even if he hasn’t been diagnosed with autism. That’s because early intervention is crucial for children with any kind of developmental delay.
“If I find that there’s a language delay, I’ll refer the child to language therapy. If there’s a motor delay, we’ll start motor therapy. If there’s a social aspect where the child doesn’t engage, we’ll try occupational therapy or behavioral therapy,” says Perlstein.
Most kids will be eligible to receive in-home services through their state’s early intervention program. (In many states, it’s called the Birth to Three program.) Children who are over three can receive services through their local public school.
Meanwhile, your doctor will work to rule out other possible causes of any developmental delays, such as poor hearing. Your child might also be referred to a developmental pediatrician, neurologist or child psychologist for a formal diagnosis. These experts will look for difficulties in communication, poor social skills and repetitive and unusual behavior. If your child meets the criteria listed in the American Psychiatric Association’s Diagnostic and Statistical Manual, your child may be diagnosed with an ASD.
Remember: There is no known, proven cure for autism — despite what you might read on the Internet. “There are a lot of ‘quick fixes’ being promoted out there, but there really isn’t a quick fix,” Peacock says. “We don’t know of anything that will cure autism, but we do know that early intervention is beneficial.”
Early intervention programs are designed to meet your child’s needs and will vary from child to child. “If a child is having trouble communicating, you need to find them a way to communicate. If they’re tantruming so much that they can’t learn those skills, helping them get that behavior under control makes them more ready to learn,” Peacock says. “The goal of early intervention is to help children learn how to communicate and to get them ready to learn.”
It’s impossible to know, at the time of diagnosis, just how much your child will overcome their autism symptoms in the future. “You never know where someone’s going to end up at the time they present,” Perlstein says. “But the earlier you start therapy, the better kids do.”
Discuss any promising treatments with your physician. “There are tons of people out there who claim they have appropriate treatments for autism,” Perlstein says. But just because something seems to work for one kid — or even for thousands — that doesn’t mean it will work for yours. Emerging therapies, such as music or immune therapy, may be beneficial for some children with an ASD, but no one knows which kids are most likely to benefit, and unproven treatments can be expensive.
“Until we’re better at understanding how to figure out which patients will benefit from which treatments, your best bet is to go with the treatments that have been proven to be effective,” Perlstein says. “If you’re a parent of an autistic kid, number one, get the primary therapies, like the speech therapy and behavioral therapy. Then be very careful about all the other recommendations.”
Any treatment plan should involve the family. “It’s really family support that helps these children and families be successful,” Perlstein says. It’s a good idea to get support for yourself too. Look for local support groups for parents of kids with autism, or get involved with an organization like Autism Speaks; you’re likely to meet other parents who are going through the same types of things as you.
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