Appreciating autism: Family pushes for autism awareness
April 7, 2011 at midnight
Updated April 6, 2011 at 11:07 p.m.
WHAT IS AUTISM?
Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders.The other pervasive developmental disorders are Asperger's Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this as the Autism Spectrum Disorders.
QUICK FACTS ON AUTISM
An estimated one in 80 and one in 240 with an average of one in 110 children in the United States have an Autism Spectrum Disorder.
The median age of diagnosis is between 4.5 and 5.5 years. However, for 51 to 91 percent of children with an autism spectrum disorder, developmental concerns had been recorded before 3 years old.
Studies have estimated that the lifetime cost to care for an individual with an autism spectrum disorder is $3.2 million.
SOURCES: www.cdc.gov and Archives of Pediatrics and Adolescent Medicine
Puzzles came easy to Joel Freese.
So easy in fact, that he could complete a 48-piece puzzle upside down just by matching shapes, not pictures.
But the behavior Joel, who was about 2 years old at the time, was displaying was nothing to necessarily be excited about - the behavior was that of a child with classic autism.
Classic autism is the most severe type of autism in the spectrum of autism disorders. Joel's autism affects his communication and motor skills.
"People always think it's something else," said his mother, Lisa Freese, who had tried figuring out what was wrong with him.
Joel, now 14, is part of an applied behavioral analysis program in Richmond, just south of Houston.
Meanwhile, Joel's cousin, Megan Tanner, is a 20-year-old taking a break from college and working full time at Cherry Berry.
In spite of Tanner's own needs, the Victoria resident decided to give up a day of wages on April 2 for National Autism Awareness Day.
"It's not talked about as much as cancer or other diseases," Tanner said.
Tanner will selflessly admit that her actions on Saturday were no big deal.
Her day's wages, which was about $80, were sent to Autism Speaks, an autism science and advocacy group.
"I thought, 'I'm working, so I might as well do something for him,'" said Tanner as she gently sliced into Rice Krispie treats at the back of Cherry Berry.
Joel was diagnosed with classic autism at 6 years old, a late diagnosis, his mother said.
Most kids are diagnosed at ages 2 or 3, she said.
The latest statistics show that one in 110 children will be born with an autism spectrum disorder and one in 70 of those will be a boy, according to Autism Speaks.
Born with seizures, most of Joel's childhood was spent in the hospital. Still, he developed along with other kids, speaking and using his motor skills.
At 3 years old, he slowly began to lose the speech he had just latched onto, his mother said.
After his diagnosis, his mother learned that a handful of children with autism are born with seizure disorders, but a benign brain tumor may be what's causing stronger seizes and heightened autistic behavior.
"They're locked in their own world," his mother said about how they blend into society, yet remain distant.
In 2007, Joel had a piece of the tumor removed and the seizures somewhat calmed down. However, a tumor around the midline of the brain was left because of how delicate that area of the brain is.
Now the seizures are coming back strong, so the family had him undergo one final surgery to remove the final piece of the tumor on Tuesday.
A piece of the right frontal lobe was also removed because it has become too damaged from the seizures over the years, his mother said.
"We've got a pretty scary surgery coming," his mother said prior to the 10-hour surgery.
Joel was expected to be back home 72 hours after the surgery.
Despite the surgery, life for Joel is looking good, his mother said.
The program for autism that Joel is in is about 30 minutes from where they family lives in Wharton.
Joel started the program in February.
In the past few weeks, we've seen a lot of progress," his mother said.
The family quickly learned that Joel knew his alphabet, could differentiate colors and numbers and he knew where he lived.
For now, the family can only take it one day at a time, Freese said.
"It is work," she said. "You never stop working."
BRIDGING THE GAP
Tanner continues the daily cycle at Cherry Berry.
Freese is happy to have a niece so selfless, she said.
"It just made me cry," Freese said at the small act her niece did. "It shocked me. I didn't even know that she knew what Autism Speaks was. I'm grateful that I have a niece that cares about her cousin."
These small awarenesses are what make autism such a hot topic, said John Handley, president of the board of directors at the Vine School in Victoria.
The school opened in 2008 and teaches kids with autism between ages 4 to 8.
"What we offer is small classrooms with five children in each classroom with a teacher and an aide," he said.
Though a lot remains unknown about the cause of autism, Handley feels the nation is on the right track.
"I think the awareness is improving substantially," he said. "I think we do better in little, old Victoria than other bigger cities. Victoria has a lot to be proud of."