The good news is that it looks like very early intervention programs for children with autism really do help. The bad news is that services can be hard to find, and expensive.
Toddlers who participated in a study testing the Early Start Denver model for early intervention showed improved language skills and IQ, compared with children who didn’t get the specialized training, which emphasizes social skills and communication. The intensive therapy, which included 20 hours a week at home with a trained therapist and additional time working with parents, increased the IQ of the children by 18 points, compared with 7 IQ points in children who got more standard therapy.
Researchers and pediatricians have increasingly thought “the earlier, the better” when it comes to autism treatment, but this is the first hard evidence that working intensively with children who are younger than 2½ helps reduce the social and language deficits typical of autism. The study, which involved 48 children ages 18 months to 30 months, was published online Monday in Pediatrics.
This indicates it’s even more important that children suspected of having autism spectrum disorders get evaluated and treated as early as possible. In 2007, the American Academy of Pediatrics said all pediatricians should screen children for symptoms of autism at 18 and 24 months, so the family pediatrician is a good first stop. But don’t stop there. “The pediatrician may be saying, ‘Let’s wait and see,’ ” says Geraldine Dawson, a coauthor of the new study. Dawson is the chief science officer for Autism Speaks, an advocacy group, and a research professor at the University of North Carolina–Chapel Hill. “I think one of the things that this study underscores is that parents should really pay attention to their own instincts and find a doctor who will listen to their concerns and then make an appropriate referral,” she says.
If your child is diagnosed with an autism spectrum disorder, finding and paying for treatment can be a struggle. Here’s the basic route:
- Find your state’s early intervention program, which should help you find and pay for treatments. Federal law requires states to provide early intervention services for children with developmental delays through age 3. The National Dissemination Center for Children with Disabilities has a searchable database that will connect you with the early intervention services office in your state. Your pediatrician also can help steer you to your state program.
- Push hard to get your child evaluated as quickly as possible. The state-mandated multidisciplinary evaluation and assessment is designed to observe your child’s physical, cognitive, and social development, then decide if your child needs early intervention. The evaluation is free through the state’s early intervention program, but waits can be frustrating. Some parents opt to pay for evaluations themselves rather than wait. Autism Speaks, an advocacy group, has a “100 Day Kit” designed to help speed the evaluation process and make a family’s first 100 days after receiving an autism diagnosis less painful.
- Find treatment in your area. The early intervention services offered vary widely from state to state. The Individual Family Service Plan created as a result of your child’s evaluation should spell out what services will be provided to your child and family and tell what the state will pay for (that varies from state to state, too). The National Professional Development Center on Autism Spectrum Disorders has a list of scientifically validated autism treatments. The Autism Society of America’s Autism Source database lists services by ZIP code, but its list is far from complete.
- Ask other parents how they’re getting the services their child needs. Parents who have been there are fabulous sources of tested advice and support. Internet support groups and listservs are a great place to find parents who share your concerns, whether they’re in your county or in another country. The Children’s Disabilities Information list of autism groups is a good place to start finding the parents who can help guide you in finding the right help for your child.
- See if your state requires insurers to pay for autism therapy. Fifteen states have passed laws that require insurers to pay for early intervention therapy when state programs do not. It’s also included in health reform proposals in Congress. For more information on insurance coverage, check out autismvotes.org.
- Do the therapy yourself. Dawson and Sally Rogers have written a book, The Early Start Denver Mode for Young Children With Autism, that parents can use themselves if they haven’t found a therapist trained in the method. (Here’s a video of one Early Start Denver therapy session. It looks like fun.) Dawson also recommends Wendy Stone’s Does My Child Have Autism? as a guide to finding good services fast.
“There are things that parents can do,” Dawson says. “These very young kids can participate in an intervention in a meaningful way, and parents can learn these strategies.”