National meeting offers ways to live with autism

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His name tag reads "Christopher Payne, Individual with Autism, Computer Geek." The first label is one the 14-year-old will wear all his life. The second is one that, thanks to persistent parents and professionals pushing back the barriers of autism, he can take pride in.

This week Christopher, his parents and his sister drove from Albany, N.Y., to join 1,100 others — mostly professionals — at the national Autism Society meeting in Orlando.

The annual meeting is as much about sharing the latest findings in the field as it is about networking with others in the same boat.

The four-day conference, which ends Saturday, includes more than 100 workshops on topics ranging from which pharmaceutical drugs show promise in improving social function (one is oxytocin), to how to help those with autism advocate for themselves to better methods for early diagnosis.

Today about 1.5 million Americans are living with autism, a disorder that affects one in every 100 children 3 to 17 years old. Forty years ago, that number was 1 in 10,000, said Scott Badesch, president of the society.

A developmental problem that usually surfaces in the first few years of a child's life, autism affects a person's ability to communicate and engage with others. The range of its severity varies widely, from mild to severe, among those affected by the disorder.

"Every day there are more options available to maximize independence and economize treatment," said Badesch. This conference is where health-care providers, educators, therapists and those on the front line — parents — share what they've figured out.

This is the fifth year Christopher and his parents have attended the autism conference, said his mother, Maria Payne. "My husband and I both come, and split up, because there's too much for one person to attend."

"The conference reinvigorates you," said Raymond Payne, Chris' father, alluding to the burnout and stress associated with raising these special kids. "We get connected to programs we never would have known about."

Chris's sister, Lexy, 15, also came along, and sat in on some classes for a research paper she is writing on teaching communications to infants. Lexy plans to have a career in autism research.

Cathy Pratt is the director of a program at Indiana University that works with public schools to help them manage the needs of autistic students. She has been attending the conference for 20 years. At this week's conference, she said, she learned new ways of helping autistic kids use iPad apps that will assist them with a variety of life skills.

Chris Filler of Columbus, Ohio, works at an autism center where she helps young people move into adulthood. "Teaching these kids how to express that they have a disability is key to that transition," she said, noting that a parent may not always be there to do that for them.

"They need to learn to advocate for themselves, to be able to say to someone, for instance, 'Can you write that down, can you say that again slowly, can we go somewhere quieter, and please don't touch me,'" said Filler, who estimates this is the eighth conference she has attended.

The networking opportunities, she said, are more important to her than the classes.

But, classroom skills are useful, too. Maria and Christopher Payne sat in on the "I Hate to Write!" session, which gave her and her son, an honor student, tools to get unstuck when writer's block hits, and the words don't flow.

Badesch said that among the most critical programs are those that help young adults develop better interviewing skills. "Ninety percent of people with autism are unemployed, and that's a crime," he said.

"We know if they get the job they will be very successful and will save the company tons of money, but it's hard to get them there when getting a job depends on a good interview, which involves looking someone in the eye." That's a skill that doesn't come easily for this group.

It's also a group whose numbers are rising at a rate scientists can't fully explain. One reason is better diagnosis, Badesch said.

But something else is happening, too.

Those in the field think a combination of genes and the environment is also to blame. They have ruled out immunizations as a culprit, which were a focus of blame for several years.

Besides the focus on why, researchers also are looking at how best to treat the problem. That starts with early detection. The average age of diagnosis is 4 1/2, said Badesch, and closer to 7 years old for minorities and the poor. "That's too late," he added.

"If we catch these kids earlier, we can do amazing things," said Badesch, whose son is autistic and will go to college next week. Every month diagnosis is delayed, windows of opportunity close.

Christopher is one of the luckier ones. His parents learned he was autistic before he turned 2. "When he was first diagnosed, our doctor told us he wasn't sure if our son would speak or go to school," said Maria Payne.

Now when asked if he will go to college, Chris says quickly, "Why wouldn't I? I hear you get pretty good jobs."

He'd like to go into restaurant or hotel management, or maybe something in television, he said. In any case, he has big plans, and, with the right kind of help, the opportunities to go along with them.

mjameson@tribune.com or 407-420-5158

Signs of autism

•Lack of or delay speaking

•Repetitive use of language or mannerisms (such as hand flapping, or twirling objects)

•Little or no eye contact

•Lack of interest in developing friends

•Lack of interest in imaginary play

•Persistent fixation on objects

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