10 Sites worth checking out if your child has Autism

Jennifer Bixler and John Bonifield, CNN

 

  • An autism diagnosis for your child means a lifetime search for answers
  • Empowered Patient offers a list of Web resources from parents and other experts
  • Parent of one autistic child: What works for one child may not work for another.

RELATED TOPICS

Autism

Child Development

Children's Health

(CNN) -- Like many parents, Shannon Kinninger spends a lot of time chauffeuring her children around town.

"We are always on the go," says Kinninger.

On Mondays, Kinninger takes her son Justin to gymnastics. Every week, the Fayetteville, Georgia, fourth-grader trains one-on-one with his coach, Rob Chontos.

"I like the balance beam," says Justin, 9.

Chontos encourages Justin to stretch his lower back muscles and build his upper body strength. For Justin, gymnastics is not only fun, it's also therapeutic.

The Empowered Patient first introduced readers to Justin Kinninger two years ago. Justin has autism. From his earliest months, Kinninger believed something was different about her son.

"When he was supposed to be sitting up, he wasn't sitting up ... when he was supposed to be rolling over, he wasn't rolling over," says Kinninger, a nurse.

The pediatrician told Kinninger that Justin was just developing late because he's a boy. But Kinninger knew something wasn't right. Finally, when he was 4, Justin was diagnosed with autism.

"After the shock wore off, we had a lot of questions. We wondered where do we go from here?" says Kinninger.

Like many parents, Kinninger turned to the Internet for answers. This week, in honor of World Autism Awareness Day on April 2, the Empowered Patient has asked experts and parents their thoughts on the best Web sites for autism information.

Autism Speaks

Autism Speaks, an awareness and advocacy organization, just updated its week-by-week 100-day kit to help families navigate the days following an autism diagnosis. The kit includes advice on how to build a team of therapists, keep accurate phone records and adapt your home to protect your child from his or her uncontrolled behaviors. Also, Autism Speaks' video glossary has more than 100 video clips comparing the behavior of children with autism spectrum disorders with the behavior of a typical child.

The Autism Society of America

The Autism Society of America, an awareness and advocacy organization, has support groups throughout the United States. The society has also partnered with AMC Entertainment to provide children affected by autism the opportunity to watch hit movies in a sensory-friendly environment, with the lights turned up and the sound turned down.

The IAN Project

The Interactive Autism Network boasts the largest online study in the U.S., connecting researchers with people and families effected by autism. Its goal is to help further research and improve social services for people with autism. The site has a variety of resources, including a glossary of terms related to autism.

Simons Foundation Autism Research Foundation

Simons Foundation Autism Research Foundation investigates the causes of autism. The site is geared largely toward researchers and scientists, but it contains a regularly updated blog that parents can monitor to learn about the latest news and commentary on autism research.

The U.S. Department of Education

When your child enters public school, he or she has rights under federal and state laws. The U.S. Department of Education has information about federal laws and state laws. You and your school district will come up with an Individual Education Plan. School districts often have a Special Education Parent Teacher Association. Parents there can often give good advice on how to work with the school district.

The National Dissemination Center for Children with Disabilities

Any child younger than 3 with a developmental delay is eligible to receive services through Early Intervention, a government-mandated program that provides services to eligible children. Services are free and vary from state to state, but they may include speech and language instruction and occupational and physical therapy. To learn how to apply for Early Intervention, click on this state-by-state directory from the National Dissemination Center for Children with Disabilities and scroll down.

Wrightslaw Yellow Pages for Kids With Disabilities

Early intervention is invaluable because it links parents to services in the community, but Lisa Goring, mother of a child with autism and director of family services at Autism Speaks, warns that parents may also have to search on their own, since it can be hard to find services without a long waiting list. "There just aren't enough service providers for the kids who need them," Goring says. To find services on your own, wrightslaw.com, which offers information about special education law and advocacy, has a Yellow Pages for Kids that lists providers.

Jobs for Autism

Jobs for Autism is an online forum to help people with autism find employment. Employers can post job openings, and users can post stories of successful and unsuccessful job experiences.

World Autism Awareness Day

To find out how autism organizations throughout the world are celebrating World Autism Awareness Day, check out this year's list of events. The site also includes materials for all parents with children about the eight red flags that may indicate your child has autism and should be screened by doctors.

 

The bottom line, says Kinninger, is to do your homework. What works for one child may not work for another.

Kinninger says that by getting the facts on treatment and what works, it will save time and money. "Knowledge is power."

CNN's Elizabeth Cohen and Ferre Dollar contributed to this report.

Find this article at: http://www.cnn.com/2010/HEALTH/04/01/ep.autism.resources/index.html?hpt=C2index.html

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