BELFAST, Maine — For Kim Topaz, every day is a good day to talk about autism. But Monday — World Autism Day — just happened to be a time that the Belfast Co-op employee made extra efforts to describe the disorder that affects her teenage son.
She wore blue to mark the third year of the Light It Up Blue global initiative to help raise awareness about autism, which affects a growing number of Americans. According to the U.S. Centers for Disease Control and Prevention, 1 in 88 8-year-olds has some form of the disorder, which is marked by symptoms that include social and communication difficulties starting in early childhood as well as repetitive behaviors or abnormally intense interests.
One of those affected is Topaz’s 18-year-old son, Sebastian Grant, who was diagnosed as a child.
“I am trying to increase awareness,” she said. “I don’t look at my son as being damaged. I look at him as special. He functions outside of what’s considered normal.”
She said that every single child who is diagnosed with autism has a different experience.
“They all have different limitations and different special gifts,” Topaz said.
When her son was little, the single mom described him as her “sunshine boy,” especially as compared to his hyperactive older sister.
“He was always good, really sweet and loving and affectionate,” she said.
But when he went to school, teachers began to question whether there might be a problem. He was oppositional, meaning he didn’t like to be told what to do, and they wondered if he might have attention deficit disorder. In sixth grade, a teacher asked if he had been tested for Asperger’s syndrome, which is an autism spectrum disorder.
The suspicion proved to be true. But that label does not mean that Topaz considers her son to be anything less than amazing. She said she has heard of parents submitting their autistic children to laboratories for testing in an effort to “cure” them of autism. The causes of autism are unknown and there is no blood test, brain scan or other biological marker for it.
“It broke my heart that parents would fight so hard for their children to be average,” Topaz said.
But life with an autistic child still presents its challenges. When Grant was small, Topaz and her daughter worked to teach Grant how to have a sense of humor — something that did not happen naturally with him. They would make jokes, catch his eye and say “ha, ha, ha” when it was time to laugh.
“Over time, he’s developed a pretty good sense of humor,” she said.
An elementary school teacher gently helped him learn how to make eye contact, which he continues to do. Later, Grant began to go to The Game Loft in downtown Belfast, an after-school program which serves Waldo County youth. There he found a niche, running his own games, making friends and becoming a leader.
“I can’t stress enough how much The Game Loft has done for him,” Topaz said.
He’s plugging away at high school and is on track to graduate this spring through B-COPE, the alternative high school for RSU 20.
Topaz said that she drives him to school each day, making sure along the way that they listen to music, laugh and that he is set up for a good day.
Grant has had difficulties trying to hold down a job, she said. A part-time job in the co-op’s maintenance department didn’t work out for him, even though his co-workers tried hard to understand his limitations because of his diagnosis.
“There are definitely difficult times,” she said. “It’s not all roses.”
On the positive end of the scale is Grant’s artwork. He has been developing his own style, and lately has been drawing famous people as My Little Ponies. One he did of Johnny Depp as a pony makes Topaz smile.
“My job is keeping him going on that,” she said of Grant’s artwork.
Topaz said that even though helping Grant thrive takes a lot of time and energy — she gave thanks to a number of local and state organizations that are helping him do exactly that — she doesn’t plan to quit anytime soon.
She cited Temple Grandin’s mother as an inspiration. Grandin, who has autism, is a well-known autism advocate and doctor of animal science at Colorado State University in Fort Collins. Her mother wouldn’t accept the conventional wisdom of the day, that Grandin never would be a functional member of society, as fact.
“There’s certainly a temptation to give up,” Topaz said. “But I’m not going to give up now.”
For more about the Light It Up Blue autism campaign, visit www.lightitupblue.org.