Living with Autism

By Carin Gorrell

One in 150 children will be diagnosed with this devastating disorder that locks them away in their own mind. Learn how you can help them.

From the moment our children are born, we worry. We lose sleep over how to keep them healthy and happy, whether they'll find true love, where they'll go to college (and how in the world we'll pay for it). But we don't tend to sweat the "givens," like whether our kids will attend kindergarten, say the words "I love you" — or even speak. Yet for more and more parents, those milestones aren't givens at all. And autism — a developmental disorder characterized by difficulty with language, emotions, and basic problem-solving — is the mysterious force that's taking them away.

Originally identified in 1943, autism used to be considered a rare disorder, but scientists are now warning of a rapid rise in its incidence: In 1994, one in 10,000 children were diagnosed; today, new findings from the Centers for Disease Control and Prevention put the prevalence at one in 150 children — that's more than childhood cancer, diabetes, and AIDS combined. What's behind the huge jump? Some suspect that new vaccines, vaccine additives, and other environmental factors are to blame. Others say the increase can largely be attributed to improved diagnostic measures.

But most experts admit they simply don't know what's triggering the spike — or even what causes autism in the first place.

"Autism is a very complex disorder likely involving both environmental and genetic influences. But money for research hasn't been available until the last 10 or so years, so we simply don't know much about its biology," explains Andy Shih, Ph.D., chief science officer for Autism Speaks, a not-for-profit autism advocacy organization. Historically, autism has received less than 5 percent of U.S. federal funding devoted to childhood diseases. This lack of resources and information has prevented any one scientific discipline (whether psychology, psychiatry, neurology, or pediatrics) from claiming the condition as its own — and accepting the responsibility for finding a cause and a cure.

Fortunately, the tides are finally turning, thanks in part to the Combating Autism Act. Passed by Congress and signed by President George W. Bush in December 2006, this legislation authorizes $924 million in federal funds to be spent on research related to autism screening, prevention, and treatment over the next five years. Though that's small potatoes compared to the $2.9 billion spent annually on HIV/AIDS research, it's enough to lay the groundwork for the future research that could eventually bring an end to autism.

In the meantime, parents of boys and girls with autism must continue their struggle to raise children who require constant attention, surveillance, and treatment — a struggle that can leave even the most energetic and optimistic parents drained, depressed, and despairing.

WHAT YOU CAN DO TO HELP

• Get walking: Each year, Autism Speaks (AS), a not-for-profit autism advocacy organization, hosts more than 60 fund-raising walks across the country. To register for a walk in your area, go to walknowforautism.org.
  
  
• Push for appropriations: The signing of the Combating Autism Act (CAA), which authorizes $924 million in federal funding to be spent on autism research over the next five years, is just step one in the process. Implementing the CAA requires that Congress appropriate funds to research agencies. To help speed these appropriations, ask your congressmen to support funding for the CAA. You can do so easily through the AS Website (go to autismspeaks.org to fill out a form letter; click on "To Get Involved," then "Support Legislation," then "Show Support").
  
  
• Call for insurance coverage: Autistic children need 30 to 40 hours a week of physical, speech, and/or occupational therapy, which can cost upward of $70,000 a year. Currently, only 17 states have legislation requiring at least some insurance coverage for treatment, which means most families must pay out of pocket. To find out if your state provides insurance coverage, or to learn how to send a call to action to your governor or state legislator, log on to autismspeaks.org.
  
  
• Show your support: Don an AS lapel pin ($10) or baseball cap ($15), or attach an AS car magnet to your bumper ($5); all are available at autismspeaks.org, and all net proceeds benefit AS. Buy one of the following at quixtar.com, and Artistry will donate $1 to Easter Seals programs for kids with autism: Artistry Essential Hand Treatment with SPF 15 ($27.25) or Artistry Perfect Moisture Lip Compact ($34.40 for a two-pack). Or buy an Artistry Beauty Begins With Heart sterling silver cuff bracelet ($55) or an Artistry Beauty Begins With Heart T-shirt ($19.99), and Artistry will donate 100 percent of proceeds to Easter Seals autism programs.



• Buy this book: Strange Son, written by Portia Iversen, is a memoir of two mothers who learn to teach their autistic sons to communicate. Available for $19.96; 8 percent of proceeds go to AS.

The adapted essays of mothers with autistic children that appeared in the May 2007 issue of REDBOOK can be found in the book The Elephant in the Playroom.

Source @ RedbookMag