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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.

Early Intervention and Public School Programs

Every state has publicly funded programs to help children at risk for developmental delays and those diagnosed with disorders such as autism. Pediatricians can refer children to these services, Wiseman says.

For example, for children under age 3, states provide early intervention programs. Why start with children so young? "Their brain is developing during these early years, and it's committing synapses to a way of thinking. So we're trying to stop the repetitive, narrow thinking or self-stimulatory thinking and expand their capacity to learn other things," Steinfeld says.

For children 3 and older, public school districts are responsible for providing an education through an individualized education program, or IEP. But quality can vary from district to district, so Wiseman advises parents to keep watch over their child's education and services.

Publicly funded programs typically provide speech, occupational, physical, and behavioral therapy, as well as a special education teacher. 

While public services are typically free or low-cost, they can be limited. "It usually doesn't provide the intensity of services that parents want," Steinfeld says. Many parents supplement with other therapies, for example, after-school music or play therapy.

Financial Planning

Parents of newly diagnosed children are frequently blindsided by the major financial struggles that lie ahead. Because publicly funded services often provide fewer services than parents desire -- and because insurance often doesn't cover certain types of therapies -- many parents end up paying huge sums out of pocket. 

In a 2007 study on the financial impact of autism published in the Journal of Family and Economic Issues, co-author Deanna Sharpe, PhD, CFP, found parents who paid as much as $30,000 per year for behavioral therapy. Sharpe is an associate professor in personal finance planning at the University of Missouri.

Applied behavioral analysis therapy, where an autistic child may have to sit for eight hours a day learning to speak or perform simple tasks, can cost up to $100,000 a year. In Arizona, Gov. Janet Napolitano has signed House Bill 2847 into law, requiring insurance providers there to cover the costs of the treatment.

But in other states, parents have depleted savings accounts, emptied 401(k) plans, or taken out second mortgages. Some have filed for bankruptcy. To add to the burden, one parent often quits a paid job to stay home to supervise the child and coordinate treatments.

"We're willing to do anything," Wiseman says. "I've downsized my home, I'm willing to go live in a shack just to know that my daughter can have the quality of life that she deserves."

She urges parents to scrutinize their health insurance plans to understand the benefits and also enlist providers to help get services covered, although the attempt doesn't always work.

Wiseman and other resourceful parents have even undergone special training to provide some simpler services on their own, such as play therapy or development of communication skills.

Sharpe's advice: consider hiring a certified financial planner or a chartered financial consultant who specializes in special-needs planning. A financial planner can help parents to develop a monetary strategy shortly after an autism diagnosis.

For low- and middle-income households, "families will have to be somewhat proactive," she says, in explaining their situation and asking about reduced fees or pro bono work.

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