Parents on front line of autism: CDC report doesn't go far enough

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It's a health crisis affecting our children.

A new government report now says one of every 68 children is diagnosed with Autism Spectrum Disorder. It's a brain disorder marked by speech and behavioral issues and costing the United States $9 billion a year.

Parents are speaking out about the alarming numbers and why they believe it's a bigger problem than reported.

Canyon Rice is making strides since our last visit back in November. He has a new therapist, new sign language and the full-time therapy his mother fought for.

"The changes are just miraculous. Baby steps, but they're huge," said Rice, smiling at her son's improvement.

Canyon's progress comes just as the Centers for Disease Control release disturbing new numbers: A 30-percent increase in children diagnosed with Autism Spectrum Disorder with nearly one in every 68 children diagnosed.

"I'm surprised they're not even higher, and I think they probably are. I think there are areas where they're probably under diagnosed," Rice told 13 Investigates.

In Noblesville, Jane Grimes wants to get the word out about living with autism.

"We're not sugar-coating autism anymore. It's hard," said Grimes, the CEO of a quarterly magazine highlighting real stories of families touched by autism.

In 2005, her now 15-year-old daughter was diagnosed. At that time, her child was the one in 10,000. Now the CDC says 1 in 189 girls are diagnosed each year, compared to 1 in 42 boys.

Still, Grimes says the numbers are likely worse than reported. She says the study didn't go far enough. The data focused on eight-year-olds in 11 states.

"We need to look at all ages, versus just eight-year-olds," said Grimes.

Parents of autistic children worry about resources for their children, starting with the cost of care.
Elsa Winslow says her five-year-old son Calvin is relapsing after Indianapolis-based Anthem reduced coverage for his occupational therapy.

"It's very frustrating. We've seen a lot of regression with my son,' explained Winslow, who lives in Minneapolis, Minnesota. Her husband's employer provides insurance through Anthem.

"We're not prepared. We need more support. Families need more support," said Grimes, who wants to see businesses taking a stand.

It's an even bigger problem for children on the severe end of the spectrum like Canyon. Intensive therapy can costs more than $100,000 a year.

In fact, Anthem had warned Jenny Rice it would no longer provide full-time therapy beginning next month, but has since had a change of heart. The insurance company has now agreed to cover at least 30 hours of full time treatment, while the State Department of Health picked up the remaining tab.

"Parents have to start early. I know when I started to see the signs in Canyon, I was in denial. I didn't want the label, so I just kind of pushed it away," said Rice, now advocating for early intervention.

Anthem did not provide a response today.

Families of autistic children want to see scientific research into the possible causes of autism. Right now they want more awareness and support statewide.

April kicks off Autism Awareness Month.

Autism Companion magazine is hosting Actress Holly Robinson Peete for an Autism Awareness Night at the Colts Pavilion. She and her husband, former NFL player Rodney Peete, have a son who has been diagnosed with autism. That event is limited, but there are walks and other activities coming up across central Indiana.