As More Autism Is Being Reported, Advocates Are Still Pushing For Awareness

By John Voket

When Linda Jones’s late son, Tyler, was diagnosed with Autism nearly two decades ago, he represented one in 2,200 children. But today, as she works with Newtown honor students and local families whose children share this condition, she knows the diagnoses rate has escalated to a shocking one in 88.

That means autism is nearly twice as common as the government reported just five years ago. And unfortunately, a Centers for Disease Control and Prevention report issued March 29 found that 40 percent of children affected were not diagnosed until after age 4.

Evidence shows that children who are identified early and get help have the best chance for reaching their potential, said CDC Director Thomas Frieden, MD, MPH. The American Academy of Pediatrics recommends autism screening for all children at age 18 months and 2 years.

Diagnosing the developmental disorder relies on observing behavior. Autism cannot be cured, but treatment including intensive behavior therapy can help many kids function better.

The academy’s Dr Susan Hyman said many children who are not making eye contact and are not talking “may have autism, but they may have other things.” She said it is important for parents to be persistent about their concerns with their doctor so their kids can be evaluated.

Experts, including CDC researchers, think broader screening and better diagnosis have largely contributed to the latest one in 88 statistic. But autism’s cause remains a mystery, and government researchers are seeking answers.

The latest numbers are based on 2008 data from 14 states and suggest that autism rates have climbed 23 percent since 2006. Rates are highest in boys and white children.

But the biggest rate increase was among Hispanics, from one in 270 in 2002 to about one in 125 in 2008. The CDC report says there is no strong evidence of any racial or ethnic difference in risk factors for autism and that it is likely the condition is underdiagnosed in blacks and Hispanics.

Proposed revisions in the manual that doctors use to diagnose mental illness would streamline autism criteria. Critics contend the suggested changes would be too narrow and exclude children who need educational and behavioral services.

Dr Hyman noted that since the manual’s last revision, in 1994, much has been learned about autism. “There’s a real possibility the new definition will be better for children,” she said at the March 29 CDC news conference.

CDC officials say research into causes of autism will help determine if there has been a true increase or just better diagnosis.

Genetics is believed to play a role. Studies have found no connection with childhood vaccines, but other factors under investigation include mothers’ illnesses or medication during pregnancy.

First results from the CDC study are expected next year.

Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, said the new figures indicate “a public health emergency that demands immediate attention.”

Her group estimates that US autism costs total $126 billion each year, including costs related to diagnosis and treatment. That estimate also includes treatment for severely affected adults and lost wages.

Locally, Ms Jones and a group of Newtown High School Honor’s Society students hold regular activity sessions for children. These sessions, held at local gyms and churches, provide an hour or two of respite time for parents and caregivers, who then have time to network among themselves as their children play and socialize.

The initiative, dubbed Families United in Newtown or FUN, was formed as a recreation program in memory of Tyler Jones, who passed away in September 2009. 

This past Sunday, April 1, the group held its fifth meeting of the year at the Newtown United Methodist Church in Sandy Hook. Beside enjoying music, dancing, and snacks, most of the children attending the group helped design a banner that will remind Newtown that April is Autism Awareness Month.

The group is in the process of getting clearance to hang the banner in a high profile public location at some point during April. And Ms Jones is already planning the next FUN event for April 29 from 1 to 2:30 pm at Club Newfit on Commerce Road.

Any parents interested in getting involved, or attending the next FUN event can contact Ms Jones via e-mail at funforthedisabled@gmail.com.

Associated Press content was used in this report.