Now she was pleading with water park staff to allow the children to return. She remembered the time her autistic son, Zack, had pooped his pants the first time he rode Metro.
Sometimes, poop happens, and Ellenby wasn’t about to let it ruin the evening of fun she’d planned for more than 500 Washington-area families of children with autism.
Over the past decade, Ellenby, a former civil rights lawyer at the Justice Department, has organized dozens of events — at pools, gyms, movie theaters — where children with autism and their families can come and be themselves. On Saturday, families from around the region gathered at SplashDown WaterPark in Manassas, Va., for an evening of water sliding, tubing and pizza in a judgment-free space.
“The only rule at my events is no one apologizes for anything,” Ellenby said. “You can flap, bounce, gallop — be as autistic as you want to be.”
Autism is a developmental disorder characterized by delayed speech, avoidance of eye contact, repetitive behaviors, and sensitivity to stimuli like noise, light and temperature. According to the Centers for Disease Control and Prevention, 1 out of every 59 children is autistic, and the disorder is more prevalent among boys than girls. Specific symptoms vary by person, but common ones include meltdowns, yelping and self-stimulating behaviors like heel bouncing and arm flapping.
“The number of behaviors our kids exhibit in public, especially when frightened, can feel humiliating enough that parents would rather keep their kids locked away at home than endure the judgment and confusion,” Ellenby said.
Children with autism and their parents are often made to feel unwelcome in public places. If an autistic child has a public meltdown or, for example, walks around the movie theater during a film, others gawk and stare. The families are sometimes asked to leave for causing a disturbance.
No one worried about that Saturday.
One little boy held his hands to his ears as he waited in line to go down a waterslide. Another yelled, “Don’t touch me!” over and over again at the lifeguard who was trying to launch him down the slide. A 14-year-old girl with braces, who avoided eye contact with the other kids but was smiling, told everyone it was her birthday. On a lawn covered by beach chairs, a little boy threw a tantrum.
For parents, the events, organized through Ellenby’s charity, Autism Ambassadors, are an opportunity for families to let loose in a relaxed and compassionate setting.
“If we have a meltdown, we will be in good company. Everyone here understands,” said Julie Mishkin of Potomac, Md., as she climbed the stairs to the waterslide with her autistic son, Jack, 10, his twin, Aiden, who doesn’t have autism, and her husband, Mark. “It’s nice to have a family outing,” she said.
“This is what every kid should be doing on a hot summer night,” said Dan Goldman, of Bethesda, Md. His son Ben, 13, flapped his arms in excitement as he waited to go down the slide. Goldman has been bringing his family to Autism Ambassador events for the past 10 years.
Autism-friendly events are becoming more common across the country. AMC Theatres and Regal Cinemas now offer sensory-friendly showings of movies, where the lights are turned up, the sound is turned down, and people are free to move around the theater during the film. Broadway shows like “The Lion King” and “Aladdin” also offer sensory-friendly performances — as do the Kennedy Center and Ford’s Theatre in Washington. Ellenby is working to bring a sensory-friendly Broadway show and rock concert to the D.C. area. She also hopes to start offering sex ed classes and coordinating vocational training for people with autism through Autism Ambassadors.
Ellenby said when her son began displaying symptoms of autism at age 5, she avoided or retreated from public places. It was just too hard and embarrassing to manage his meltdowns when people would stare and, in some cases, actually yell at or criticize her.
“I would just go home,” she said. “But one time, I decided I had enough of that, that I would take them on and hold him down until he overcame his tantrum.”
Once, when Ellenby took him to see the movie “Happy Feet,” he thrashed, screamed and kicked while Ellenby, restraining him, comforted him until he calmed down. Another time, she physically dragged a shrieking Zack into a theater to see a “Sesame Street Live” Elmo show. Horrified onlookers accused her of being a bad mother. One spat on her; another threw soda at her.
Her methods might be disconcerting to some, but her goal was to help Zack overcome his crippling fear of enclosed spaces so he could lead a more normal life, she said. While Zack is still severely autistic, he can now be in public places by himself.
For many of the parents at SplashDown, autism-friendly events also are opportunities for their children to learn to overcome their fears and slowly acclimate to increasingly chaotic and noisy situations, as they’ll have to do if they want to live with any independence.
Becky Rosenberg, of Bethesda, Md. , has been bringing her son Eli, 7, to Ellenby’s events for the past three years.
“We’ve had a lot of misses,” she said. “Sometimes, Eli won’t make it out the door of the house. Sometimes, we’ll get in the car, but he won’t want to leave the car.”
On Saturday night, Eli made it out of the car but was scared of going down the tall, windy waterslide by himself. “We’ve been struggling with this for the last hour and a half,” Rosenberg said. Her partner, Stephanie Gaudreau, was nearby, comforting Eli, who was sitting on top of a post with a life jacket on.
“This is the journey. It’s all a win for us, pushing gently and trying to get beyond a former spot of challenge,” Rosenberg said.
The next day, Eli asked to go back to the water park to give the slide another try.
Nora Fitzpatrick said her 13-year-old daughter Rory can now go to a regular showing at the movie theater without being afraid of the dark because she’s been to enough sensory-friendly showings to feel comfortable.
Having a child with autism “can be isolating and stressful because you feel like you can’t do and enjoy the things that all of your friends do,” said Fitzpatrick, who was unable to attend Saturday but has participated in other Autism Ambassadors events. But the rise of sensory-friendly events is giving children like Rory a chance to experience a real childhood.
“We’d keep her home more without these kinds of events,” she said.
Emily Esfahani Smith, a freelance journalist in Washington, D.C., is the author of “The Power of Meaning” and a community reporter for the Aspen Institute’s Weave: The Social Fabric Project.