Autistic teens steal limelight

The three celebrities in attendance at the dinner to raise money for the autism program at the Munroe-Meyer Institute at UNMC were, from left: Rick Majerus, ESPN baskeball analyst and former college basketball coach; Jason McElwain, an autistic student from New York who made national headlines when he scored 20 points in the last four minutes of the only high school basketball game he played; and Dick Vermeil, NFL coaching legend. Vermeil was the keynote speaker at the event.

Dick Vermeil knew he had been upstaged, but he didn’t mind one bit.

The NFL coaching legend delivered the keynote address at the 5th annual GWR Sunshine Foundation benefit dinner at Qwest Center Omaha on June 4 to raise money for the Munroe-Meyer Institute’s autism program.

After the crowd of more than 400 had heard from two autistic teens – Jason McElwain of Rochester, N.Y., and Nick Stuart of Omaha – Vermeil knew he had a tough act to follow. His first words were: “Wow, what do you need me for?”

McElwain and Stuart had dazzled the crowd, as they put a face on autism that many in the audience knew all too well.

McElwain – also known as J Mac – is best known for scoring 20 points in the last four minutes of the only basketball game of his high school career. It made national news and turned him into an instant celebrity. Several film production companies, including Warner Brothers and Walt Disney, are interested in making his story into a movie.

Jason’s goal in life is to “stay focused and never give up.” His mother, Debbie, also spoke. She, too, was thrilled with Jason’s athletic feat, but she said it was not as thrilling as when Jason uttered his first words – “Big Bird.”

“There’s always a way around any disability,” Debbie McElwain said. “People are waking up to autism. Anyone with a disability can succeed.”

Temple Grandin, Ph.D., considered one of the most accomplished persons with autism in the world, was the keynote speaker for the MMI/GWR Sunshine Foundation Autism Summit. Annie Bird, left, coordinator of the summit for the Munroe-Meyer Institute, looks on.

Although not as famous as Jason, Stuart had an equally powerful impact. A wrestler, Stuart is an eighth-grader at the Buffett Magnet Center. Last year, he was winless in his 13 matches. He decided to get serious about his training and started eating more vegetables and working out, while eliminating soda pop and candy bars. The results were spectacular, as he posted a 10-3 record this year.

Stuart said he is a huge fan of World Wrestling Entertainment (WWE). “I can tell you anything you want to know about it,” he said.

His goal is eventually to get a job with the WWE. In the meantime, he said he “wants to be an ambassador for autism.”

The dinner was just one of three special events held to raise awareness and money for autism. On June 3, more than 425 people turned out for an educational summit on autism at Qwest Center Omaha, and on June 5, a field of 144 golfers played in a golf tournament at Shadow Ridge Country Club. All three events were directed by the GWR Sunshine Foundation, which was founded by Scott Robertson and Gail Werner-Robertson. The couple has two boys on the autism spectrum. Gail Werner-Robertson is founder and CEO of GWR Wealth Management. Her husband is director of flight operations for Werner Enterprises and founder and president of UltraAir.

“Even people who have known me and my kids for years learned a lot by listening to Jason and Nick,” Werner-Robertson said. “One of the highlights of dinner for me was watching Jason go up to Nick after his speech and shake his hand. Now that seems like a very small item, but for kids on the spectrum that one social interaction is a huge accomplishment. I also was delighted that even with all the attention Jason and his mom have received, they felt very moved by our event. They even donated to our cause.”

Gail Werner-Robertson, left, who chaired the fundraising activities for the autism program at UNMC, Mike and Stephanie Johanns, honorary chairs for the event, and Bob Bell, vice president for business and community development for UNMC’s technology transfer company, UNeMed.

Although she was pleased with all three events, Werner-Robertson was most excited by the MMI/GWR Sunshine Foundation Autism Summit, which featured Temple Grandin, Ph.D., considered one of the most accomplished and well-known adults with autism in the world.

Dr. Grandin didn’t talk until she was 3 1/2 years old, and her parents were told that she should be institutionalized. Instead, thanks to a mentor who recognized her interests and abilities, she became a successful designer of livestock handling equipment. She has designed the facilities in which about half the cattle in the U.S. are handled and serves as a consultant for firms such as Burger King, McDonald’s and Swift.

“I received numerous thank you notes from parents who were so thrilled to get to hear Temple Grandin,” Werner-Robertson said. “As many times as I have heard her talk, I learned something new this year and something I could immediately apply to our own home situation. Likewise, I had people come up to me after the dinner and say, ‘I understand so much more about autism now.’ ”

Werner-Robertson said it was “a magical three days.” She said one of the funniest things occurred at the dinner. “My son, Cleigh, slipped a note to Coach Vermeil to see if he could get him to come out of retirement to come to Omaha to coach the Omaha Beef, the indoor football team. The coach was so moved, he said he was going to put Cleigh’s note on his refrigerator,” she said.

One of the speakers at the Autism Summit was Wayne Fisher, Ph.D., director of the MMI Center for Autism Spectrum Disorders. He said: “Gail Werner-Robertson and all of the board members of the Sunshine Foundation deserve our deep admiration and appreciation, because they have really stepped up to the plate and spearheaded the private fund-raising efforts for autism here in Nebraska.

Temple Grandin, Ph.D., signed autographs for the more than 425 people who attended the Autism Summit.

“The money raised helps to fund public awareness and education activities like the Autism Summit. Some of the money also has been used to pay for treatment services for families, because many treatments are not covered by insurance or Medicaid. Finally, we are using some of the money to make the MMI Center for Autism Spectrum Disorders one of the premier research and treatment programs in the country.”

Dr. Fisher said the MMI autism program is a leader in the genetic diagnosis of autism, as well as in the treatment of severe behavior disorders and feeding disorders among children with autism. “We are well on our way to becoming a leader in the epidemiology of autism, especially in the area of early screening and diagnosis, which is critical,” he said.

Vermeil, who has three children and 11 grandchildren, said he knows what it’s like to have a special needs child. He has a 13-year-old grandchild with a chromosomal abnormality.

He gave an inspirational talk in which he applied some of his coaching philosophies to what parents can do to successfully raise their autistic children. Some of his sage advice included:

• “Players don’t care how much you know until they know how much you care.”
  
• “The human mind is like a parachute – it only works when it’s open.”
  
• “The greatest thing you can be is a great example. You cannot expect people to be what you are not.”
  
• “There are no limits on your future, if you don’t put limits on your people.”
  
• “Nothing really good comes easy. There is no easy way. I love the challenge of making people work harder than they think they can.”
  
• “There’s only one thing more infectious than a good attitude, and that’s a bad one.”
  
• “If you have integrity, nothing else matters.”

Facts on Autism Spectrum Disorders Autism is a lifelong neurodevelopmental disability with no known cause. Autism affects between 2 and 6 children for every 1,000. There are more than 1.7 million people with autism in the U.S. Autism is 10 times more common than juvenile diabetes, muscular dystrophy, childhood leukemia, and cystic fibrosis combined, yet over 100 times more dollars per case are spent on these other conditions than are spent on autism. Each day, 66 children are diagnosed with autism. Each year, 24,000 children will be diagnosed. Research shows that intensive services started early can make a profound difference. Most children aren’t seen by specialists until they’ve passed their second birthday. Families receive limited or no insurance coverage to help pay for needed services. Some families spend $60,000 or more per year for special services for their children. Nebraska’s public schools are the primary providers of service to children with autism.

Bruce Buehler, M.D., director of MMI and chairman of the UNMC Department of Pediatrics, praised Werner-Robertson and the GWR Sunshine Foundation. “Every cause needs a champion,” he said. “Gail and the Sunshine Foundation are helping to bring awareness about autism to the community and the medical profession. Every child deserves the chance to succeed, and Gail is fighting for every child and family. She is not alone. There were more then 200 families at the Autism Summit trying to do the best for their child.”

Werner-Robertson said final numbers are still being tallied for this year’s events. However, she is hopeful that proceeds from the 2006 events will exceed the 2005 proceeds of $624,000.

Annie Bird, coordinator of the MMI Center for Autism Spectrum Disorders and coordinator of the Autism Summit, said $116,000 of the funds raised at this year’s autism dinner are earmarked for specific programs at MMI, including expansion of social skills clubs for youth with autism in two school districts, support for families to send their children to Camp Munroe, establishment of a social skills training program for teachers of young children with autism, and psychology support for MMI outstate clinics held throughout Nebraska.