Misunderstood and left out


Robyn Monaghan


Yn and Yang would have been good names for two Joliet brothers with a form of autism called Asperger Syndrome, their mother Beth Arias jokes.

Alex, 9, trots around the room flapping his hands, firing a rapid volley of questions his mother says he uses to make sure he’s the center of attention. His brother, Adam, 6, is as withdrawn as Alex is outgoing. It’s a struggle for Adam to shape his thoughts into words, Arias says. When a birthday party gets too boisterous, he clutches his ears and crouches under the table.

"It’s like they are the two different halves of a whole," Arias says.

Across town at Audrey Bopp’s home, a peculiarly similar scene plays out. Her twin teenage girls, diagnosed with two separate forms of autism, live with diametrically differing sets of traits.

Amanda, with Asperger Syndrome, started talking when she was 9 months old and abruptly stopped when she was about 2. Ashley didn’t utter her first word until she was about 1½. Now she is excessively verbal, giving lip service to most of the thoughts that run through her mind.

Age of autism

As doctors diagnose kids with 10 times more new and different types of autism than their parents’ generation, families like the Arias and the Bopps, who are coping with several autistic siblings, are becoming common, experts find.

Today, one of about 150 newborns will have autism, according to figures from the U.S. Centers for Disease Control and Prevention.

Once a parent has a child with autism, the risk of having a second child with autism is 3 to 6 percent, says Dr. Barbara Burton, a genetics expert with Chicago’s Children’s Memorial Hospital. That’s higher than the general population risk of about 1 in 150. The same risks apply for Asperger’s.

New gene link

Researchers with the Autism Genome Project (AGP), the largest autism study ever launched, used families with autistic siblings around the globe to identify the genes linked to autism. The AGP harnessed new computer technology to sort through billions of DNA signals to isolate 23 X-shaped chromosomes containing DNA that makes up human cells. The AGP results show that different combinations of genes probably produce the variations in degree of severity and behavioral traits of autism.

"Recent research has revealed that genes clearly play a role in the majority of cases of autism, although we are not yet at a point at which testing can routinely pinpoint these genes in most patients," Burton says. "Nor can we identify the other factors that must interact with these genes to produce the symptoms. There are many theories but proof is lacking to support most of these."

Better recognition and diagnosing are another piece of the story, doctors say. And researchers aren’t ruling environmental factors out.

Research emerging over the past five years show autism traits fall in a spectrum of distinct but related subsets, adding new diagnosis to medical reference books: Asperger Syndrome, Fragile X Syndrome, Landau-Kleffner Syndrome, Rett Syndrome and Williams Syndrome. Fifty years ago, many with these autistic variations simply would have been stamped retarded and warehoused in an institution.

U.S. federal authorities are boosting the bottom line to solve the autism whodunit, tripling funding to $100 million for autism research over the past decade.

Toddlers and timing

For years, some parents have been fingering vaccines for the sudden onset of autistic behaviors in their toddlers.

Audrey Bopp knows the arrival of Amanda’s autistic symptoms came at the same time as her DPT vaccination. It’s a story Dr. Dana Brazdziunas, director of developmental and behavioral pediatrics at Children’s Memorial Hospital, says she hears a lot.

"The doctors all say there is no link, but it does seem like quite a coincidence," Bopp says.

It’s not just coincidence, Brazdziunas explains. It’s timing. About a third of children with autism seem normal until parents see a regression between their first and second year—about the same time they get their vaccines.

"It is natural, then, for parents to believe the vaccine theory about autism," Brazdziunas says. "Extensive scientific investigations have failed to conclusively find a link between autism and vaccines."

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