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The Challenges of Raising a Child With Autism

Raising an autistic child is a long journey, but parents have many options and places to turn for help.

Coping With an Autism Diagnosis continued...

"Your life is going to be different," says Wiseman, the mother of a 12-year-old daughter diagnosed with autism at age 2. "The dreams that you once had for your child's future are going to be different. But you are going to be able to build dreams for your child."

The task is monumental for both child and parent. "The parents have to provide all this external structure for the child to be successful," says Steinfeld, who is also an associate clinical professor at the UC Davis MIND Institute, a research organization on neurodevelopmental disorders. "We tell people, 'This is a marathon, not a sprint.'"

Read Up on Autism

Parents of newly diagnosed children often know little about autism, experts tell WebMD. One of the first challenges is to dispel misconceptions and understand realities.

Children with autism are very different. "There's such a range of function," Steinfeld says. "There are very high-functioning children who are going to college, driving, taking airplanes, doing fine. But there are children who still need supervision and assistance when they're in junior high and high school."

While authoritative books and web sites are a good place to start, Steinfeld points parents toward the National Academy of Sciences' "Educating Children with Autism," which can be found online. The in-depth guide helps to familiarize parents with the maze of specialists and therapies.

In particular, the "recommendations" chapter "states what the goals need to be, what the priorities need to be, and how much intervention is needed," Steinfeld says.

"Children need to have intensive intervention that is teaching them adaptive skills," she adds. "Left to their own devices, children with autism are interested in their own special interests -- whether it's something like self-stimulation or something like a narrow interest, such as excessive interest in maps, electricity, vehicles, or the solar system."

Build a Treatment Team to Help Your Child

According to a child's needs, parents must work with their child's pediatrician to start building a care team, Wiseman says. These specialists might include: developmental pediatricians, child psychiatrists, speech-language pathologists, occupational therapists, physical therapists, and others.

But be warned: Long wait lists are a common complaint, experts say. In some areas of the country, Wiseman says, "there might be a six-, 12-, or 18-month wait to see some of these professionals." 

According Wiseman's book, Could It Be Autism?, parents can be assertive by taking these steps:

  • Ask to be placed on a list of patients who can come in on short notice if a cancellation occurs.
  • Ask your pediatrician to advocate for your child by placing a call to the specialist.
  • If you can't get in to see the specialist right away, ask his or her staff to recommend someone else who can help your child during the waiting period.
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