The World Within: Unlocking the doors



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Posted on December 29, 2009 at 5:00 PM

Updated Saturday, Jan 2 at 12:23 PM

On the day Seattle Children's opens it's new autism center, the Grube family arrives for an appointment that will unlock doors to their daughter's inner world.

The Grubes worry about the behavior of Alyssa, an active 5-year-old with delayed language and social skills.

Parental instinct tells Molly and Edward something isn't quite right with their little girl. But is Alyssa a child with autism? It will take expert assessment before Molly and Edward get answers to their most gut-wrenching questions.

"It does hurt me to see my daughter doesn't play and interact with kids at her current age and at the same time all the emotions of what did we do wrong what could we have done right?" said Edward.

"You know like why my child, guilt that maybe I cause something and sadness because it's hard for her not to have friends like other kids. I would love for her to have friends. She doesn't have anybody. It's really hard as a mom to see my child like that," said Molly.

If testing reveals Alyssa is a child with autism, the Grubes will not be alone in their journey.  

In the northwest and the nation, Autism Spectrum Disorder is the fastest growing developmental disability today. A wide range of behaviors surrounds the baffling brain disorder.

Just like a snowflake, no two individuals with autism are alike.

On one end of the spectrum is Asperger's, a high functioning sub-type of autism where kids so focused on details become little professors on whatever fascinates them.

On the other end, the profoundly disabled, unable to speak or take care of themselves.

Thousands of kids throughout Washington are all dealing with autism in their own way.

"People, some people with autism, liken the experience to being in a foreign country, to being on the wrong planet, that things are so foreign to them," said Dr. Bryan King, Program director of Seattle Children's Autism Center.

One of the things we hear about is autism is that the number of people who are affected is increasing rapidly. Why?

"Now the prevalence is being pegged at something on the order of one in 100," said Dr. King. "And while part of that is increased awareness and some changes in the diagnosis , many of us are of the opinion it might be something else as well."

The exact cause of autism remains a mystery. Science has definitely ruled out "bad parenting" as a factor - no connection there.

At the University of Washington, Dr. Raphael Bernier works on breakthrough research pinpointing a genetic link.

"We've got a good sample of information. to actually make some true finding in terms of what's going on genetically we're hopeful, but not there yet," he said.

Scientists suspect genes do not work alone. They may be aided by another culprit.

"We're very interested in the environmental factors or other factors," said Dr. King. "I think it's fair to say at the moment there is no single candidate or group of candidates that people are zeroing in on."

Jean: One of the things we hear is that there might be a connection between vaccines and autism , what do you say about that?

Dr. King: Well people have looked very carefully, many, many studies actually, none of these studies suggest there's likely to be a relationship.

Jean: Without really knowing the causes yet, or single causes of autism is it safe to describe it's like putting the bullets in the gun, that's the genetics and then the environment is somebody pulling the trigger.

Dr. King: I think that's a great way of looking at it.

Jean: So it could be both.

Dr. King: Almost certainly is both.

There is no simple blood test or x-ray to quickly determine if a child has autism. Diagnosing the disorder, and its severity, requires an evaluation.

When the Grubes visit Seattle Children's new autism center, 500 other families remain on a waiting list. The demand for a diagnosis far exceeds what can be supplied.

Jean: so what can be done for so many families waiting for help?

Dr. King: It's one of those our boat is so small and our sea is big problems that we face and we just need to get bigger.

Doctors welcome as many patients as they can to the center, including the Grubes who waited a long time for this day.

"I wish I had the results today," said Molly.

"But we just need to know a guide to help us. Before this, we were in the dark," said Edward.

By the end of the assessment they hope to open a gateway to Alyssa's "world within."