Dawn Brasch laughs when asked if she ever got "the look."
"I can't tell you how many times," said Brasch, education and training specialist at the Autism Society of Minnesota (AuSM) and mother of a young adult son with autism.
Meltdowns? Oh, yeah. They had a few of those.
So for years, Brasch carried a secret weapon — a little card produced by AuSM that she'd hand out in hopes of stopping judgment in its tracks.
"This child has autism," the card reads. "Please be patient while we help our child regain control."
Now her son carries his own card, beginning with the words, "I have autism." An explanation of autism is printed on the reverse side.
It's a sad commentary on modern life that parents and other caregivers, sometimes pushed to the brink of physical and emotional exhaustion, have to worry about icy stares, too. But requests for autism cards are growing, in Minnesota and beyond.
AuSM, a St. Paul-based advocacy and education organization, sells five cards for a dollar. Websites now offer many versions, from informational to heartbreaking.
"You can't imagine what it is like to live like this every day and your stares and whispers do not help," reads one. "Please educate yourself before you judge. Parents like me need all the support we can get."
On Jan. 1, the Alabama Department of Public Health began issuing autism ID cards to ease interactions with first responders, such as police officers, firefighters and emergency medical teams. People with autism are seven times more likely to get into trouble with the criminal justice system, due largely to misread cues.
"Those events are often anxiety-producing for anybody," said Bama Hager, policy and program director for the Autism Society of Alabama, and the parent of a 14-year-old son with autism. "For an individual on the autism spectrum, an interaction with a responder can exacerbate symptoms. For many, verbal communication is quite challenging."
Social, communication disorder
It's very likely that you know someone with, or someone raising someone with, autism. The national rate is one in 68, according to 2014 data from the Centers for Disease Control and Prevention.
In Minnesota, the most reliable count in 2013 was 16,600 people (up to age 21), said AuSM executive director Jonah Weinberg. That's up from 15,900 in 2012. "Minnesota has some of the higher numbers," he said, "but Minnesota does a lot more work to find kids with autism and get them the resources they need."
The society's website (www.ausm.org) is filled with events, training opportunities, resources and personal stories. News of Alabama's autism cards received more than 8,500 views on AuSM's Facebook page.
Autism is a social and communication disorder that makes "reading" social cues difficult. People with autism land along a wide spectrum, from mild to severe. But one common trait is that someone with autism may react in unfamiliar settings in puzzling ways, sometimes shifting quickly into high anxiety.
That means parents must shift quickly, too, sometimes with responses that may seem startling.
Weinberg recounts the story of a woman and her teenage son, who had a "meltdown" at Target.
"She knows that when he has a meltdown, he needs deep pressure to calm him down" Weinberg said. "She pushed him down on the floor and crawled on top of him. As you might imagine, people started saying, 'Get off him!' They called security."
In another situation, a man quickly removed his son from a store, but the meltdown began as he tried to strap his son into the car's seat belt. Passersby threatened to call the police.
Weinberg appreciates the complexities here, particularly when bystanders believe the child is in imminent danger. We've been cautioned over and over to do something in such situations. "We can't really blame the people around them," he said. "It looks like he's being attacked."
That's why many parents are relieved to have the cards.
"You don't have time to take the focus off your child and have a conversation," he said. "You have to make sure they don't hurt themselves."
What you can do
When her son was younger, Brasch handed out cards in stores and to the barber, "who then had an immediate understanding of the situation. It kind of changed the whole interaction to know that he wasn't being rude." She gave them to her son's siblings, too, "to help them explain the behaviors."
Still, the dirty looks, the stares, the advice from someone who has never been in this situation, cut deep.
So what can we do to really help?
First, we can learn more about autism. Visit AuSM's website, or Autism Society (www.autism-society.org), the national organization.
"Well-meaning people who offer support, the smile, the 'Been there,' the 'Can I help?' are always appreciated," said Brasch, who has been teaching families for 20 years. "Those who offer 'advice,' suggestions of punishment, the tsk-tsk, the 'If that were my child … ' are not.
"We are often going on very little sleep and trying to help our children as best we can. We may produce our card while trying to soothe our child without melting down ourselves."
The cards really do help, she said. Recently, at a grocery store where she shops, a cashier marveled about her son, "Oh, my gosh, he's grown so much. Look at him!"
The cashier had received an autism card years ago. Coupled with conversation, it changed everything.
"They've become invested in him," Brasch said. "The card encourages people to ask questions."