'I am not human to them'

Hesham Khater lives in a white brick, suburban-style house with red shingles amid manicured gardens and beds of blowing leaves.

It looks like a typical family house in any affluent neighborhood of Syracuse.

As the loose screen door swings open, the living room appears with family portraits overlooking the Persian rug and overstuffed couches. Sitting on the couch are Mohamed Khater, his wife Magda Bayoumi and their oldest son Hesham.

Hesham is autistic.

His mouth open, Hesham stares vacantly into space. His two younger brothers, Ashraf and Ahmed watch him type on a small computer with the help of his mother as she gently guides his right wrist.

This is how he communicates. Hesham cannot speak. An empty gaze and a frozen grin accompany each movement he attempts.

But for his parents, both Syracuse University alumni, it is important he stays active and continues to learn.

Hesham graduated from Syracuse's Corcoran High School in 2005, his father said pointing proudly at the graduation picture on a nearby table.

Hesham started taking classes at SU last fall. But he wasn't able to continue this semester because he and his family have yet to find someone to help him get around campus every day.

"I need to go back to school," Hesham writes on his computer. "Please find someone for me."

As difficult as autism can be, Hesham and his family have something that lightens the load: faith.

"Our faith is bigger than the pain," Mohamed said.

Hardship, Mohamed added, is a test from God.

The truth, he said, is no training could have prepared his wife and sons for the struggle with autism he's faced, but their faith took on an extra dimension after Hesham was diagnosed with autism.

"We always had faith as Muslims," Mohamed said. "It's coming from Allah. Everything happens for a reason.

"I told (Magda) we must accept what Allah gives us. God is testing us with this. Instead of saying, 'Why us?' We have to say 'Hamdulillah,' thank God, because everything that comes from God is good. It's hard on him, because people don't think he's intelligent."

As his father spoke, Hesham's eyes filled with tears. And as he rocked his body with frustration and gasped for breath, Mohamed rubbed Hesham's back gently.

Suddenly, Hesham got up and nervously paced the flour, gasping, with a helpless grin on his face. Eventually, he crawled back between his parents onto the couch.

"What's wrong, Hesham?" his father asked in a tender voice.

The son looked away, and before his tears could spill, he buried his face in his father's white shirt. Absorbing his son's muffled cries, the father closed his eyes and whispered something in his ear.

Finally, Hesham mopped his face with the palm of his hands and let out a long sigh.

"I am not human to them," Hesham typed. "I hate the feeling."

For a while father and son sat there, holding each other tightly.

"It's just hard," Hesham typed as he broke into tears again. "I don't like to have people to feel afraid from me."

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Autism is a complex developmental brain disorder, said Dr. Larry Novak, Hesham's family doctor.

The disorder falls under a range of syndromes called pervasive developmental disorders, more commonly referred to today as Autism Spectrum Disorder.

Other disorders under ASD are Asperger's, Rett Syndrome and Childhood Disintegrative Disorder. Novak said progresses have been made in the treatment of autism.

Cheli Paetow is a special education teacher who has been working with Hesham for eight years.

Who Hesham really is, Paetow said, only comes out with people who assume he is competent.

"Instead people judge him based on a body he cannot manage."

Beneath his mask, she said, there is a lively soul.

"He is an exceptional individual," Paetow said. "He does as much for my life as I do for him."

Still, Paetow said the findings have proved to be relatively small gains, and the fact is many aspects of autism remain a mystery.

Judging by the wide array of people who fall under the diagnosis, autism is one of the most complicated neurological disorders known, Novak said.

Some diagnosed with autism, like James Burke, a third-year student in the College of Human Ecology, are college educated. He has amassed more than 46 credit hours and has "a lovely 3.4 GPA," Burke said.

Others, like Hesham, can't speak, let alone sustain their attention long enough to do a task for more than a few moments.

There are thousands of autistic people throughout the country aided by facilitated communication, said Douglas Biklen, dean of SU's School of Education and leading facilitated communications advocate. He helped promote the method in the United States in 1992.

The long-term goal of this training is to fade physical support and eventually enable independent typing, said Marilyn Chadwick, an assistant director at the Facilitated Communication Institute in Syracuse.

The process can be grueling for the patient and his or her family, Chadwick said.

Still they deserve consideration, Hesham's mother Magda said.

Throughout New York state, parents like Mohamed and Magda and educators like Paetow are pushing for research. They are also working to change laws affecting people with disabilities throughout New York.

The struggle of the Khater family is all too familiar to many families across the country.

Estimates of American children with an autism disorder in the United States alone run as high as one in every 150, and one in 94 boys, according to the Centers for Disease Control and Prevention. And autism is growing at a rate of 10 to 17 percent each year, making it more common than pediatric cancer, diabetes and AIDS combined, according to the Autism Speaks Web site and statistics from the U.S. Department of Education.