Solving the Puzzle of Autism
Early diagnosis makes a difference
While the "why" of autism remains frustratingly elusive, the "what to do about it" has come into sharper focus of late. The best outcomes, experts agree, occur when kids are identified early-but that still happens less frequently than it should. Part of the problem is that there's no blood test or other biological marker for autism, so doctors must diagnose children based on behavior. Screening takes time, and no one even knew what to look for in the very young until recently. As experts hone in on the behaviors that are likely to indicate a problem, more children will be referred to specialists earlier. Recent research has found that in high-risk groups, red flags, like lack of babbling or eye contact, can be spotted at 1 year of age or younger. (See our Milestone Checklist.
"This reinforces what parents have been saying for years: Signs of autism are there from an early age," says Lonnie Zwaigenbaum, M.D., a developmental pediatrician at the University of Alberta in Edmonton, Canada, who's involved in the research. "If you're concerned, trust your instincts and be assertive with your doctor. The more specific you can be -- 'My baby isn't making eye contact' -- the more likely a physician is to pay attention."
Treatments that turn kids around
Even so, it's still rare to receive a definitive diagnosis of autism in a child younger than 18 months. "There's so much variability in child development that without an objective test, it's dicey to say for sure whether a child has ASD," says Rebecca Landa, Ph.D., director of the Kennedy-Krieger Institute's Center for Autism and Related Disorders in Baltimore. "That said, we now believe you should treat a child with developmental delays, even if you don't have a firm diagnosis. You can't say, 'Well, if he's still not talking by age 3 we'll do something.'"
Of the dozens of treatments available, the most thoroughly researched are Dr. Greenspan's "Floortime" -- in which the child is engaged in things she's interested in, then guided toward more complex interactions (making eye contact by holding a beloved toy near the mother's eyes, for example) -- and applied behavioral analysis, which uses positive reinforcement to build a child's social, communication, and academic skills. Most interventions use a variety of methods to address a range of symptoms.
Even more challenging than choosing a course for intervention is navigating the system to get access to the services a child needs. Children younger than 3 are eligible for early-intervention assistance, a federally funded program that's available in every state, but it's easier to find in urban areas than in rural ones. Parents often have to be creative -- and persistent -- about getting the help they need. "Trying to secure adequate services for a child with autism can be an incredibly frustrating experience, one that many parents describe as a full-time job in itself," says Suzanne Wright, who with her husband cofounded Autism Speaks, a public-awareness group that funds autism research, after their grandson was diagnosed with the disorder. "I encourage parents to be aggressive and to use websites like ours to connect with other families who can help."
Almost all children make progress with appropriate treatment -- and some may even reach the point where they no longer meet the criteria for ASD. When Hall's son was first diagnosed, he received just one hour each of speech and developmental intervention per week. With the help of Advocates for the Rights of Citizens with Disabilities, however, she's managed to cobble together services -- including occupational and speech therapies -- that total more than 20 hours a week. "I've had to battle to get Cameron help," says Hall. "I've learned the meaning of the term 'squeaky wheel.'" But her efforts are paying off. Although Cameron was nonverbal when he began therapy, now, at 29 months, he can sign for things he wants and has nearly 40 words in his vocabulary. "He's also reached the point where he can have a plate of food in front of him without throwing it on the floor -- and that's big progress," she says. "Every day I see new changes. The therapy is helping, and every positive step gives us new hope."
Ginny Graves is a writer in the San Francisco Bay area.