“The store personnel don’t want to get involved or they’ll call the police on you. I mean, that’s the first thing they’ll do,” says Julia Duin. Her daughter wanted something to eat as they were grocery shopping. “I could tell she was losing it. I had to get her out of the supermarket fast.”

Julia, a journalist, knew she had to get her out of the store. “She’s losing it and she started to scream. I said, ‘Honey, we’re going home.’ I was hauling her past the door, just trying to get out of the damn store. And she sat down and started to scream right in the entrance. I’m like, ‘Oh my God.’”

Hidden Disabilities

Julia had to rely on passersby just to get her daughter into the car. They also accompanied her home to make sure her daughter did not get violent in the car, which has happened before.

Julia’s daughter has what’s called “hidden disabilities.” Other people can’t see them. They judge parents because they don’t know their kids are really struggling. They think the kids are just misbehaving. Julia’s daughter’s hidden disabilities come from sensory processing disorders. “It’s a whole battery of disabilities that aren’t apparent like Down syndrome is apparent,” Julia says.

Getting help from others during a stressful time is unusual. Not only do most not help, they’ve called the police on Julia at times. “It’s not much fun because the kid looks normal, but then they get angry and they start acting out and people think you’re the abusive parent.”

People have taken pictures of her license plate, called the police or called Child Protective Services. “That’s what it’s like. I didn’t ask for this.”

What are Hidden Disabilities?

There are a lot of hidden disabilities, Stacy Hurt recently told The Stream. Stacy Hurt is a patient consultant and disabilities advocate. Autism, ADHD, depression, generalized anxiety disorder, separation anxiety, schizophrenia, fetal alcohol syndrome and even some cancers are examples of hidden disabilities. “Just because you don’t see them doesn’t mean they’re not there,” she explained.

Stacy Hurt has a visibly disabled son. He’s nonverbal and non-ambulatory. Even though she’s worked in healthcare for years, she admits she’s judged people who parked in handicapped spaces when they didn’t have a visible disability. Then she herself suffered from cancer.

“I found myself really looking in the mirror and saying, ‘Huh, how about that? There are people that can appear perfectly fine but are very, very sick and in need of a space close to wherever they’re going.'” It was a life lesson that things aren’t always what they appear to be. Her own personal journey led her to champion for those with hidden disabilities.

‘It’s Like Living on an Island’

Autumn Wilk knew her son was different when he was two-and-a-half years old. He didn’t speak right away. He had meltdowns. “I think at that moment, we didn’t realize that he was going to be a special needs kid. … It was just one of those things like, ‘Okay, he’s going to be different.'”

Autumn’s second child also has special needs. Having two children with hidden disabilities has been difficult. “It’s like living on an island.” She feels isolated in part because people don’t understand, especially when disabilities are not apparent. When her child is struggling, some people stop and stare. She’s embarrassed, even though she knows it’s something she can’t control.

“It’s very difficult,” said Julia Duin, mother of an adopted teenager with hidden disabilities. “It’s very lonely.” When her daughter melts down, crowds sometimes gather.

“You just feel like an utter failure,” she says. “And everybody just thinks you’re just the lousiest jerk of a parent. That’s what hidden disabilities is all about. And you get to a point where you’re sick and tired of explaining yourself to people.”

The Limitations From Hidden Disabilities

“We are extremely isolated in a lot of cases,” said Autumn. They can’t do things other families can do so easily, like run an errand after school. “Those are things that we can’t do. Everything has to be very routine and very scheduled and definitely we cannot do things that are just spontaneous.”

In addition, she says, “just depending on what happens in his world that day will determine what happens in our world, if that makes sense. … That’s just difficult. So, a lot of what you do you feel isolated.”

One of the biggest challenges is trying to communicate with others. “Every kid is different,” said Autumn. “[I’m] just trying to teach people that it’s okay to be different. It’s okay to not get in a box.”

Stacy Metz, mom of a 25 year old with hidden disabilities says the biggest challenge is when they are in public and her daughter has a “meltdown.” “Nobody thinks twice about a toddler lashing out and crying uncontrollably, but when a young adult does that some people react harshly or indignantly.”

What Parents Want You to Know

“I think the biggest thing I would love for people to know is most kids with disabilities just want you to listen,” said Autumn. “And they just want to know that you’re interested. They can make no sense whatsoever, but just being with them makes a huge difference.”

One of the biggest challenges for her is communicating with others about her son. “He is not quote normal unquote, but there’s nothing wrong with him. At the same time, he’s still a kid. He still has feelings, he still has emotions, he still has dreams, he still has, you know, all of these things. And he’s not stupid. He’s smarter than the average child definitely. … [J]ust trying to get society to adapt to the special needs is a little bit difficult.”

Autumn suggests asking if you can help the parent if they’re struggling with their child. And she asks for patience. “Don’t gawk and stare. Maybe say, ‘Can I help you?'” Although some parents will say no, don’t assume everything is okay. Something as simple as asking if you can help put their groceries in a cart so mom or dad can control their child who’s having a meltdown would help tremendously.

“Asking instead of looking, instead of staring, offer that help, offer that support, or if you witness something like that, just tell that parent ‘You’re doing good.’”

Julia said parents get no relief. “You’re 24-7. People are not lining up to offer to babysit for your kid. Offer to help relieve that family. [J]ust know that these people, they’re isolated.”

Ask if You Can Help

It’s also important to ask if they need help. Once Julia was on a jogging trail with her daughter at a huge city park when the girl became angry. She wanted to walk on another trail. She started screaming and hitting Julia. Some joggers asked if she was okay. She told them no. She then asked them to call the police. “So, I would say if you see something going on, with a truly overwhelmed adult, ask if [you] can help.”

“Ask the parent if they need help,” said Stacy Metz. “Depending on the child, another person intervening could be a help, as in [my daughter’s] case. But with some children a stranger in their space could heighten the meltdown. A kind person helping getting the grocery cart to the car or entertaining siblings while you deal with your child could be a welcomed blessing.”

Don’t Give Up

Speaking on behalf of those with hidden disabilities, Stacy Hurt said “‘don’t give up on me and don’t judge because I need you to just bear with me, be patient, be kind with me.’” These are life lessons. “The overarching theme is that you need to treat people with hidden disabilities the same that you treat people with visible disabilities.”

Stacy Hurt thinks about Jesus would do. “It’s really all about faith in action, inclusion, and applying the principles that Jesus has taught us.”

Autumn notes how hard it is for parents when children with hidden disabilities make a scene. They can feel the judgement. “It’s embarrassing to have to walk out of the middle of something,” she said. The parent wants to hear someone say “You’re okay, mom, you’re doing good,” or “Don’t worry about it. It’s okay. Just leave it, you’re fine,” she says.

“Don’t just sit there and stare, but either offer support, offer help, or just keep going.”

 

Nancy Flory is an associate editor at The Stream. You can follow her @NancyFlory3, and follow The Stream @Streamdotorg.