Nancy DeRoos' son is autistic and every once in a while, she needs to stand up for him. She recalls one woman at a fast food restaurant.
"My son was just moving, moving, moving, because that's what he does, he just moves, moves, moves," DeRoos explains. "My husband got up and walked away and she turned around and looked right at me and she said, 'Can't you control him?' I looked at her and said, 'He has autism.' 'Oh,' she said and then she turned around. That was it. I know it sounds bad, but I love it when I can do things like that just to make people feel as bad as I do when they say things like that."
DeRoos says those comments from other people hurt and her first instinct is to hurt back.
Autism affects a person's ability to communicate and interact with others. They are resistant to change, have difficulty expressing what they want or need. They often throw tantrums and can come across as aloof.
"(A woman) said, 'Can't you control him?' I looked at her and said, 'He has autism.' 'Oh,' she said.
Kristi Sakai's husband and three children have Asperger's Syndrome, which is a form of autism. Sakai was the keynote speaker at a conference on Autism at Augustana College in Sioux Falls.
Sakai says people can mean well but often say things without thinking.
"A lot of people say well, 'You must be a special parent, or God must have chosen you to have this child.' To which I say, 'God wants you to babysit. Can you come over this weekend?'"
Sakai says she has a hard time deciding if someone is being judgemental or if they're uncomfortable or if they feel compassion.
Once, in the hallway of his school, her son was having what she calls a melt down.
"The parents of the general ed kids were setting up a book store watching my son cry and scream," she recalls. "He was crying and yelling, 'I hate you, I hate you.' They were giving me looks like why don't you get that kid under control."
Sakai says when her son has an episode, any extra stimuli is too distracting. Even a nice gesture is too much physical movement and can make the tantrum worse.
What is almost routine to her is often disruptive to others.
"I've gotten thicker skin because you have to. For every person who says an unkind comment, there are 100 who are thinking it," Sakai says. "At least that person is saying what they think and you have the opportunity to explain. Not every unkind comment is meant to be cruel. Sometimes they are really trying to help."
Kristi Sakai says it's important for parents of autistic kids to be pro-active and use those moments to teach others about autism.
According to the director of the South Dakota Center for Disabilities Autism program, Brittany Schmidt, it's her job to educate parents and teachers and others about how best to work with an autistic child. She says most people are afraid of people with autism.
"Parents have felt ostracized in the community be it in the church setting, or the grocery store setting, or being kicked out of daycare," Schmidt says. "Usually it's a testament to the level of challenging behavior the child exhibits and the lack of understanding of how to manage that challenging behavior. So definitely it happens."
Schmidt says there's a shortage of daycare for special needs children in Sioux Falls. She says the larger centers have small staff and lots of kids and the focus has to be on the needs of the majority.
Your support matters.
You make MPR News possible. Individual donations are behind the clarity in coverage from our reporters across the state, stories that connect us, and conversations that provide perspectives. Help ensure MPR remains a resource that brings Minnesotans together.