Autism is a condition that many people have at least heard of and with good reason: It’s estimated that 1 in every 44 8-year-old children in the US has autism spectrum disorder, according to data from the Centers for Disease Control and Prevention ( CDC).
But while a diagnosis of autism spectrum disorder is fairly common, parents of children with the condition say there’s a lot of people get wrong about it. “People automatically think that it’s ADHD or another disorder. Many don’t understand what autism is,” Maria Davis-Pierre, a mental health counselor, the president and chief executive officer of Autism in Black, and the mother of three — two of who have autism — tells Yahoo Life.
With that in mind, several parents of children with autism opened up about what they wish other people understood about autism spectrum disorder — and why it matters.
“Being autistic doesn’t mean you have an intellectual disability.”
Two of Davis-Pierre’s children — her daughter Malia, 9, and her son Davis, 6 — have been diagnosed with autism spectrum disorder. She also has the condition. “I want people to understand that, even though the actual name is ‘autism spectrum disorder,’ it’s not a disorder. It’s how they’re born and how their brain thinks,” Davis-Pierre says. “People automatically think someone with autism spectrum disorder has an intellectual disability.” While people on the autism spectrum—which can include anything from minor symptoms to severe disabilities—can have an intellectual disability, it’s not a given, Davis-Pierre points out.
She says she wants people to understand that “our brains just think differently from yours. … You don’t have to feel sorry for me or my children.”
“Autism makes our family dynamic very hard.”
Raising a child with autism spectrum disorder can be very difficult for a family, another mom of three, Stacey Kuhfahl, tells Yahoo Life. Kuhfahl’s 9-year-old son, Daniel, has autism spectrum disorder, is minimally verbal and has sensory processing issues. “He is more sensitive to sounds than typical people,” she explains. “The sound of his younger brother crying is very traumatic for him and can cause a meltdown, where he appears to be in physical pain, crying and screaming and holding his ears.”
Kuhfahl says she has “been through the stages of grief many times over, and I try to see the bright side of things.” But, she adds, “I think the perception is all mine, because despite all of Daniel’s struggles, he is so happy. He takes delight in playing with Play-Doh or chalk, or going to his favorite restaurant. His resiliency and pureness keeps me motivated to keep challenging him and advocating for him.”
“Girls can be autistic, too.”
Autism spectrum disorder is 4.2 times as prevalent in boys (3.7 percent) as it is in girls (0.9 percent), according to CDC data. Despite this big difference between genders, “Girls can be autistic,” Davis-Pierre says. “There is a huge gap between when girls get diagnosed and how often boys get diagnosed, but people have to understand girls’ ability to mask and pick up on some social cues,” she explains. “They often get misdiagnosed as well.”
“Having autism doesn’t make someone a ‘bad kid.'”
Eric Ridenour’s 3-year-old son Benjamin was diagnosed with autism spectrum disorder last year. “It’s really tough sometimes for our little guy,” Ridenour tells Yahoo Life. “He gets easily frustrated, and can’t convey his feelings well, so it leads to a lot of stress and anxiety for all of us.”
Ridenour says that it’s frustrating because “People often think because my son looks normal at first, that he is just a bad kid.” He adds, “People think [that] to have a disability, he must be in a wheelchair drooling or something. It is really hard to get people to understand the finer problems of a very young child with autism, because it isn’t as obvious as it shows in older people.”
While he doesn’t “expect the world to be autism experts,” Ridenour says that it would “be nice if people, in general, took the time to ask questions before judging.”
Cow-pale agrees. “I try to make our autism visible so to speak,” she says. “I think it would be easier for people in the community to accept Daniel’s ‘bad’ behavior if he appeared physically disabled. Instead, I find myself sometimes announcing to strangers that he is acting a certain way because he has autism. There were many years that I was embarrassed to say that, but now I feel like I shouldn’t have to say that.”
“It’s very difficult for our other children to have a typical childhood.”
Kuhfahl says that her son’s autism “limits where we can go and what activities we can do,” adding, “We are hesitant to go on vacations, because the stimulation for Daniel is too much and he needs more support than we think we can provide .”
She says that her daughter “is also getting to the age where I fear she will become embarrassed or resentful” of her brother’s autism. “She is the most amazing and supportive sister, but I see that her life and the playdates she can have and the activities that she can participate in are limited by what her brother can do,” Kuhfahl says.
“People with autism can be good employees.”
Patrick Eidemiller is the primary caregiver for his niece, Dani Bowman, who came to live with his family when she was 11. Eidemiller’s family “decided to start an animation company to support her passion and abilities,” when she was 14. “Much of our family dynamic is centered around her company, building it, growing it and supporting its expansion,” he tells Yahoo Life.
Now 28, Bowman is the force behind the animation company, Animation, which offers digital learning and creative workshops for people of all abilities. Eidemiller says people often mistakenly believe that those with autism “can’t comprehend what’s going on around them just because they may have communication challenges, and they are not employable.” While Bowman “struggles daily with executive skills like checking and corresponding to emails,” she’s still able to work, Eidemiller says.
Julie Cole, the mother of six, agrees that it’s possible for someone to have autism and be successful. Her son was diagnosed with the condition when he was 3, and she tells Yahoo Life that early intervention “was key” to his being independent now. Her son is currently 22, “is now living away from home, attending university, has his driver’s license, a group of friends, is a lifeguard, has a black belt and is heading into summer with a great summer job,” Cole says.
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