Today, the chance of you having a child with autism or knowing someone who does is getting higher every day.
According to a report released last month by the Centers for Disease Control and Prevention (CDC), 1-in-50 school children has autism, a sharp jump from the 1-in-88 ratio released in 2012.
However, health officials were quick to note that the new information does not indicate a rise in autism cases, but shows that doctors are diagnosing autism more frequently, especially in children with milder forms.
As they observe April as Autism Awareness month, local experts note that autism is also becoming more noticeable to more people.
“Everybody’s either coming into contact with or knows someone with autism,” said Shiela Habarad, clinical director of the Behavior Analysis Center for Autism (BACA), which has area locations in Zionsville, where Habarad works, and Fishers. “Everyone seems to have a link to it somewhere in their life.”
Autism is a developmental disorder that appears in the first three years of life, and affects the brain’s normal development of social and communication skills.
Statistics indicating one in 50 children having autism was definitely noticeable to Kristian Little, whose 5-year-old son Jacob has a mild form of the disorder.
“Autism is more common in boys, so that means you can get a classroom of 30 kids in it, and at least one boy could have some form of autism,” said Little. “That’s real.”
Jacob, an energetic child with a friendly disposition and ready smile, was diagnosed with autism when he was 18-months- old. Like other children his age, he enjoys playing, but signs of his disorder such as a sudden outburst or a fixation on watching how a toy works instead of enjoying it, are observed.
Little said Jacob has made significant progress in the development of his communication since being enrolled at BACA, which serves as both a school and treatment center, three months ago. However, like many families in their situation, they deal with the misconceptions, myths and stereotypes often associated with autistic children.
“One of the things I get a lot of is that he doesn’t look autistic,” Little said. “A lot of times I’m standing in line at the grocery store and someone might think he has bad behavior or that I’m not disciplining him, without noticing he has a disorder. I think because he looks like every other little boy they don’t realize he has a problem.”
Another stereotype that Habarad and Little say they frequently notice comes from people who believe that all autistic people are automatically extremely gifted, such as the character Raymond Babbitt, played by Dustin Hoffman in the 1988 film “Rain Man.”
“It’s like I should be proud because Jacob might be a rocket scientist someday, although he is smart,” said Little, smiling.
Habarad noted that many autistic children do indeed have special gifts, but that the path to developing a normal life and success and progress are different for each child.
“Just like many kids, children with autism are different,” she said. “There really isn’t one type of autistic child.”
Mary Roth of the Autism Society of Indiana pointed out that another common misconception is the belief that the tantrums of autistic children are misbehavior.
“They are trying to communicate,” Roth said. “Their world is frustrating because they are having more complex thoughts and feelings than they can express verbally.”
Roth noted that some kids are not verbal at all, but that doesn’t mean they don’t have deep thoughts or wishes.
“They aren’t spoiled brats reacting to being told they can’t have candy,” she said. “They are many times reacting to some sensory input that is huge to them and the rest of us are oblivious to.”
Robin Bowen’s 10-year-old son, Tre’ attends BACA’s Fishers campus and has a moderate form of autism, along with cerebral palsy that affects his physical mobility.
“He is not what most people would think of as being the typical autistic child,” Bowen said. “He’s very loving, likes a lot of attention, is funny, and likes to laugh.”
Tre’ was first diagnosed at age 6, and has a language delay that complicates his communication among other children, who do not understand his disability. Yet, he doesn’t let this keep him from enjoying friendly encounters with other kids, listening to his Elmo Sesame Street learning tapes, playing outside and being around water, with supervision of course.
Bowen said a frequent stereotype she has encountered is the belief that autistic kids are not loving or social.
“Just because some can’t tolerate their closeness or prefer to be by themselves, doesn’t mean they are not loving,” she said. “It’s just their way of coping with whatever is going on at that moment. Some autistic children also don’t like a lot of noise.”
Another statement that Bowen is weary of hearing is that autistic children can’t learn.
“That’s a myth, because some are very intelligent,” she said. “The challenge is finding a way to bring it out of them.”
Habarad noted that while autism has an impact on a patient’s quality of life, it can also have a dominant presence in the lives of loved ones. Pressure can be placed on families in a variety of ways, especially emotionally and financially.
“The community needs to be aware that not only are individual children being affected by autism, but so are their families,” she said. “I don’t know, for example, how Kristian does it. It’s a tough job when you have these kids 24 hours a day.”
Little, a single parent, agreed that parenting an autistic child can sometimes take its toll.
“Jacob has an uncle with a pool that he is obsessed with,” she said. “Whether we are inside or outside, he might try to get in it. That puts me in a position where I’m not able to enjoy myself, or my family, because I have to make sure I keep him safe. I can’t assume everyone else will.”
However, faith and strong support from extended family has kept her and Jacob going.
Roth said some of the common challenges faced by families with autism include parents incorrectly blaming themselves for the condition, embarrassment, financial difficulties paying for care, burdens felt by siblings of autistic individuals and stress on marriages.
Bowen, who is also a single parent of Tre’ and two older daughters, must balance special parenting needs with a demanding job, leaving time and energy hard to come by. Sometimes family and friends, she said, don’t understand her stringent schedule.
Bowen recently moved to Indianapolis, and has found difficulty receiving support here.
“People will say that they’ll do this and that, but when it really comes down to it they are somewhat fearful of maybe not being able to meet his needs,” said Bowen.
She added that parents often have difficulty getting “a break” or introducing their child to other learning opportunities by taking them to a place such as the Boys & Girls Club or the YMCA.
“I would have to spend hours and hours explaining his needs to them before they can even agree to accommodate them,” said Bowen.
Still, like Little and other parents in the autism community, Bowen is happy to make the sacrifices needed to ensure that her son has the best opportunity to reach happiness.
“It can be real tough, but you just do what you have to do when you love your children,” Bowen said.
Next week: Steps the community can take to meet the needs presented by autism. For more information on autism, contact the Autism Society of Indiana at arnionline.org or call 1-800-609-8449.
