Family with 2 autistic brothers measures their progress

DURHAM -- Sammy Flores sits on the couch in his living room, staring ahead at the television blaring in the corner. A cartoon is on, though 12-year-old Sammy does not laugh while watching it. Instead, he sits there, oblivious to the conversations going on in around him.

He only speaks when spoken to, and even then, he doesn't look directly at the speaker. Instead, he looks in the direction of the person talking, almost like he is conversing with a statue rather than a real live person.

He is thin, with unruly brown hair. When he smiles, it is a grin that lights up his entire face. This day, a school holiday, he wears sweatpants and a T-shirt, looking like any other kid who spent the morning watching television.

On the floor in front of him, his two younger brothers, Joey and Matthew, entertain themselves with Yu-gi-oh cards, though 4-year-old Matthew gets up and runs from the table several times during the game, leaving Joey alone.

There seems to be an air of frustration for Joey while he waits for his younger brother to return from another room.

"You OK?" his father, Tony Flores, asks from his nearby chair. Joey nods his head, silently concentrating on the playing cards in his hand. Tony moves his attention to Sammy, still staring at the TV.

The dad asks his eldest son the same question, to which Sammy also nods his head, though he doesn't look away from the cartoon.

For Tony Flores, asking his sons if they are OK is a routine part of his day. If he didn't, the two older brothers, who are autistic, would never tell him if something was wrong.

It has happened before in the Flores' house.

A year and a half ago, a kid on Sammy's bus began to constantly pick on him. It didn't take long before Sammy began to withdraw from those around him.

"It's like cracking a nut [when he shuts down,]" Flores said. "You have to figure out how to get into them again. They don't respond to the things normal children would ... You have to experiment and figure out why he shut down on you. It's not easy. It can take quite awhile. We've had some instances where it hasn't taken long, maybe a couple of weeks, and we've had instances where it's taken a year."

It could happen again. So Tony Flores asks the boys if they are OK.

If one of the boys had a broken arm, Flores explains, the boy would just keep it to himself.

Flores knows the boys aren't ignoring him. Their inability to connect with other people is just a part of their lives as autistic children.

There are many characteristics of autism, which is described as a spectrum disorder, ranging from mild to extremely severe. Some of the symptoms of autism are the resistance to change, aloofness, tantrums and inappropriate attachment to objects, just to name a few.

"They see things differently than us," Flores said. "Their focus is very narrow. They can only focus on one thing; they focus on it very intently. They see the tree in the forest instead of the forest despite the trees. They have trouble absorbing everything around them, because if they did they couldn't handle it. It would be a sensory overload."

The Autism Society of America describes it as children and adults having difficulties in verbal and nonverbal communications and interactions with others. It is a neurological disorder that affects the functioning of the brain, including the communication skills.

"Communication and interaction is where typically you're going to see the most noticeable impact," said David Laxton, communications director of the Autism Society of N.C. "But each person with autism can be marginally different but have the same diagnosis."

As the morning goes on, Tony Flores convinces Sammy to turn off the TV and gets Joey away from the cards. Tired of sitting indoors, he ushers the unwilling boys outside, eager to get them out of the house and into fresh air. Joey is the more reluctant one, preferring to stay inside if at all possible.

Their days are very structured and the boys rely on a calendar to let them know what is going to happen next.

"They have trouble with multi-step, or transitioning from one thing to the next," Flores said. "Having a schedule helps them stay focused on what they need to do, ease transitions from one thing to the next. And relieve some anxiety. If they don't know, they tend to get very anxious and that's where a lot of the problems start to happen."

Their schedules do not stop in the summer, either. Flores' boys, who are considered mildly autistic, need to keep busy so they don't regress during their break. Their days are spent with structured activities such as camp, Special Olympics, or an afternoon at the pool.

They stop to help Joey put on his roller-skate shoes. Due to the autism, Joey's fine motor skills are a bit behind where they should be. His small fingers do not have the ability to grasp the buttons needed for the skates to work. Tony leans over to help his son with the skates, then checks to make sure all the boys are wearing jackets.

Joey and Sammy Flores are a rarity, even in the world of autism. Autism is a developmental disability that is present at birth that affects the ability to process and make sense of information, mainly impairing the ability to interact with the environment.

Dr. Joseph Piven, professor of psychology and pediatrics at UNC and the director of the developmental neurological disorder research center there, said that about 5 percent of families with kids with autism have more than one child with it.

In the past, there was a social stigma attached to autism, where many people said it occurred from child rearing. That theory has been ruled out, though not much more is known about autism.

"We now know that it's due to abnormalities in the brain as opposed to the effects of child rearing practices by parents," Piven said in a phone interview. "We now know it's due largely to the influence of genes. Beyond that we don't know a lot. It's really because it's so complex."

Though not a lot is known about autism, it surely is not going away. A federal study by epidemiologists at the U.S. Centers for Disease Control and Prevention, found that in 1996, 3.4 out of every 1,000 children aged 3-10 in metropolitan Atlanta had an autism spectrum disorder.

The CDC describes the term autism spectrum disorder as a group of developmental disabilities that are caused by abnormality in the brain.

The amount of cases in Atlanta is 10 times higher than rates from three other U.S. cities that used similar research methods, the report said.

The CDC's Web site maintains that, though they do not know an exact number, during the 2000-2001 school year more than 15,000 children aged 3-5 years and more than 78,000 children and adults aged 6 through 21 were classified as having autism under the Individuals with Disabilities Act.

When it comes to questions about autism, researchers have more questions than answers.

"There are probably more unanswered questions than there are answered questions," Piven said. "... It's just a very complex disorder. All we really know about autism is this ... It's a behaviorally defined syndrome. We now know it's due to abnormalities in the brain as opposed to the effects of child-rearing practices by parents. We now know it's largely due to the influence of genes. But, beyond that, we don't know a whole lot. It is really because it is so complex."

Piven hopes to be able to pinpoint which genes might harbor autism. He, along with James Bodfish, is researching genes and autism at one of two centers funded by the National Institutes of Health to focus on the biomedical and behavioral aspects of autism.

Meanwhile, Tony Flores continues to work with his two sons. He and his wife live day-to-day, working with their sons on what they need right now. He would like to think about their future, to plan for something like college or jobs, but he doesn't.

"Joey's case manager told us that one thing we could never do is look at the future," he said. "So much is changing that you just never know. You can't rely on what's going to happen six months from now, six years from now. Because it's going to continually change."