It’s likely in today’s society that you have been exposed to someone on the autism spectrum – the son or daughter of a friend, your children’s classmate, or even a character on a TV show. However, even as our collective understanding of Autism Spectrum Disorder (ASD) grows, myths and misconceptions persist.
To shed some light on the reality of living with ASD, here are a few common misperceptions those with autism and their families often hear.
Myth #1: “You don’t look like you have autism.”
While there are three hallmark areas of difficulty for people on the autism spectrum – behavioral, communicative and social – the ways these difficulties manifest is unique to each individual. It is impossible to determine whether someone is on the spectrum from outward appearance, and there simply is no autism “look.” Anne Tapia, a social worker with Cincinnati’s Regional Autism Advisory Council (RAAC) says that autism is defined by the very thing that makes it so difficult to pin down: “The spectrum concept. You are not going to understand what autism is by knowing one single person with autism.”
Myth #2: “Kids with autism don’t understand feelings.”
“People look at individuals with autism as being in their own worlds and not having the typical reactions to social situations – and think they don’t care or aren’t taking into consideration other people’s emotions, and that’s not true,” says Tapia. While a lack of empathy is a common stereotype for children on the spectrum, the truth is they can show great compassion and emotion. The way that empathy is communicated can be a challenge though, Tapia says. “How they’re taking in the world and how they’re engaging with the world is going to look different. They’re being empathetic, they’re just expressing it in a different way.”
Myth #3: “It’s the parents’ fault.”
Autism parents are their child’s biggest advocate and loudest voice. Sometimes though, it can look to the outside world as if they aren’t doing enough. Cincinnati parent Maria Bast has a 15-year-old son with autism and says that when he was diagnosed over a decade ago, there was more blame on the parents. “It’s hard to stop thinking what you could have done differently,” she says. “They tell you not to worry, this will pass. He’ll get better in a few years… but it’s in your hands to fix him.” It’s a lot of pressure for parents, says Tapia. “There’s a grief process that families go through and there’s a huge denial factor. We all have dreams for our children. It doesn’t mean those dreams aren’t possible, but how you get there takes a lot more work.”
Myth #4: “You must be a genius.”
While many children on the spectrum possess certain unique skills or talents, true savant qualities are rare, and are only seen in a small fraction of people with ASD. Part of the problem, Bast says, is the way people on the spectrum are portrayed in the media. “Shows and sitcoms that showcase kids with autism portray them as geniuses that can function in society. But there’s very little on the other end, where we are.” This portrayal leads directly to our next misconception.
Myth #5: “Autism is kind of cool.”
Representation in pop culture is important, but it can also be misleading. “People see someone with autism and think it’s not that bad,” Bast says. “They think it’s actually kind of cool, it’s pretty interesting.” Tapia agrees that this kind of depiction can be damaging. “In some ways more media portrayal is great, but sometimes it can succeed in perpetuating these stereotypes. That ends up making families who have a different experience with their child feel even more isolated as far as what autism is and what it looks like.”
Myth #6: “There must be tons of resources nowadays.”
Early diagnosis and intervention has improved outcomes significantly for children on the spectrum. But as Tapia says, it’s often hard for teens and adults to access resources. “The adult system is completely different from the children’s,” she says. “For families to be thinking about how to plan for transition, it’s really overwhelming.” It’s a familiar feeling for Bast, whose son is quickly approaching adulthood. “We’re thinking, what’s going to happen when we’re not here? Right now, we’re trying to take care of ourselves, so we can keep him with us as long as we can.” However, Tapia has some encouraging words for families feeling uncertain about the future. “I would say there’s just so much out there. It takes work and effort to find the support, but it is there. They are not alone.”
Bottom line: the autism spectrum is broad, and the children who are on it each have their own challenges, hopes and dreams. Like all people, those with autism want to be seen past a label, for the unique individuals that they are.