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By current estimates, about one in a hundred children in the United States has been diagnosed with an autism spectrum disorder (ASD), a largely genetic group of learning and developmental disabilities that leave kids unable to process information normally. Consequently, they struggle with social and communication problems.
As a relatively new concept, ASD takes in a much wider range of social, communication and behavioral disabilities than the previous label of autism, but that’s good news. The expanded definition of autism spectrum means many more children might receive the therapy they need to improve their social skills and help them live more normal lives.
“Before 1991, the only autistic children receiving support were so profoundly afflicted that they were diagnosed as being mentally retarded,” says Rowland Barrett, Ph.D., director of the Center for Autism and Developmental Disabilities at Rhode Island’s Bradley Hospital, the nation’s largest treatment center for autistic children. Similarly, many children now considered to be on the milder end of the autism spectrum would have simply been labeled socially awkward or “odd.” Now these kids receive diagnoses such as Asperger’s syndrome or “pervasive developmental disorder not otherwise specified”—and benefit from therapies that can improve their lives dramatically. Some have related behavioral issues as well, such as compulsions (they have to line up their stuffed animals just so, for example), obsessive interests (in numbers, say) or aggression—many of which can be successfully treated along with a child’s primary symptoms.
Separating the Hype from the Hope Understandably, parents of profoundly autistic kids are often desperate for a miracle cure. “Every year we see all kinds of fads,” Barrett says. Some, such as sprinkling the amino acid dimethylglycine on food, seem harmless though ineffective, he adds. But others, including chelation therapy, hormone-altering drugs and hyperbaric oxygen therapy, come with real dangers. You can read more about these controversial and potentially dangerous treatments here.
At the same time, a number of highly effective therapies have become available to autistic kids. The most thoroughly studied of these is applied behavioral analysis (ABA), which teaches communication and social skills by focusing on basics like making eye contact and responding appropriately to other people. ABA can produce dramatic progress, especially if started by age 2 or 3 and extending to age 5 or 6. “Even in profoundly affected children, we typically see improvements of 50 percent or more,” Barrett says. For instance, nonverbal kids can learn to communicate with specially designed picture books and cards, and as a result, they become more social and communicative, and less frustrated.
For children on the milder end of the autism spectrum, behavioral therapy that starts early often allows them to enter mainstream classrooms by the time they reach school age. They are still autistic, but because they’ve received therapy they’re able to function more normally—sometimes so normally that only their parents and teachers are aware of their condition. Click here to read more about specific tried-and-true treatments and therapies for autism. Many children on the autistic spectrum—even those who have done well in behavioral therapy—may struggle with related issues that can be treated with drugs or supplements. For instance, many have trouble sleeping. “Studies show that a melatonin supplement at bedtime may help children with autism fall asleep more easily,” says autism researcher Susan Levy, M.D., of the Children’s Hospital of Philadelphia.
Other behavior difficulties such as obsessions and compulsions are sometimes eased by a category of medications called selective serotonin reuptake inhibitors (SSRIs). Kids who have problems with extreme aggression or agitation may be helped by medications called atypical antipsychotics. Drugs for attention deficit and hyperactivity disorder (ADHD) sometimes help those with extreme hyperactivity, impulsiveness or inattention. Over the past decade, autism experts say they’ve seen great progress in the behavioral and speech therapies used to help children with autism, especially when they are started early. “In the future, we hope that early detection and diagnosis will lead to treatments that alter not only the course of behavior, but perhaps even brain development,” says Dr. Levy. “And greater understanding may lead to more individualized and effective treatments.”
How to Get Services Clearly, effective treatments for autism require long hours with highly trained therapists. In other words, they’re expensive. Robert Sears, M.D., author of The Autism Book (April 2010), estimates that some of his patients need behavioral and educational programs that, together, can cost as much as $10,000 a month. Who pays? Since the 1990s, states are required to provide early intervention and special education services for children diagnosed with autism. Unfortunately, these programs are sometimes underfunded and inadequate. The good news is that many states now require health insurers to cover treatment for autism, which in the past was commonly excluded from coverage. The National Dissemination Center for Children with Disabilities (800-695-0285) provides information on early intervention and special education services to children of all ages, with state-by-state contact information for service providers.