Take a child with autism out in public and you’d better have a thick skin. They can act out in public places – shouting and moaning, running, crying or acting in ways that look like a temper tantrum and then some.
What happens next?
Staring and pointing, at times. Whispering, too, and looks that can range from pitying to peeved.
“People stare. They point,” said Aimee Kauschinger, an Elma resident who has two children, including a 5-year-old autistic son.
That is why local parents of autistic children are excited about a new program that has debuted at an East Aurora children’s museum.
The program, called “Au-Some Evenings,” happens once a month at Explore & More Children’s Museum, in collaboration with an autism center at Women & Children’s Hospital in Buffalo and the Center for Autism Support and Education. Four of the evenings have been held so far.
One recent event attracted 100 people, including 30 young people with autism.
The program appears to be a first of its kind in the region and path-breaking on a larger level as autism moves into the spotlight as a national concern.
The local program provides a monthly opportunity where families with autistic kids can come together for social time and constructive play in a setting that is not only autism-friendly but also autism-focused.
“There’s just not a lot of options for us,” said Joe Borgisi, a Town of Tonawanda resident who with his wife, Julie, has two daughters, including a 6-year-old with autism. “Things tend to be overwhelming for my daughter. It’s hard to find the right fit for her.”
The evenings are not restricted only to autistic kids. Their siblings also are welcome, as are other family members and friends.
But the evenings are planned around and geared to the needs of the autistic kids.
And that makes all the difference to parents like the Borgisis and the Kauschingers.
Instead of worrying about their children running around a local mall or restaurant, they can bring them to the new program and know that they are among others who understand what autism looks, sounds and acts like.
“This is worry-free, from our end,” Borgisi said. “Everybody there understands.”
Kauschinger, a part-time nurse whose husband helps run a family auto business, said the program has helped her son and her family.
“Nathan is high-functioning,” she said. “But there are times he will have a little bit of an outburst. If people don’t know what’s going on, they will stare. People criticize what they do not understand.”
The concept of the program is simple: It’s designed to offer an evening activity open to all families in Western New York with autistic children, providing a safe and autism-friendly environment where children can play together in a setting where their behavior will not be judged or misunderstood.
The evenings, which have been sponsored by the Hodgson Russ law firm, are free to families, organizers said.
The goal is “to give children on the autism spectrum a nice safe environment, where they can go out and be kids and play,” said Dr. Michelle Hartley-McAndrew, a pediatric neurologist who is medical director of the Children’s Guild Foundation Autism Spectrum Disorder Center at Women & Children’s Hospital, one of the organizers of the new program.
“Parents really enjoy it,” the doctor said. “They feel relieved there is a safe place where their kids can go and play.”
Kauschinger put it this way: “Here, our kids can go and just be themselves. They are not judged.”
Borgisi said it is sometimes hard to get people to understand what parents of autistic children go through, in everyday situations – the grocery store, a restaurant and so on – that others take for granted.
“A lot of our friends who are parents ... just don’t understand we can’t do some of the things they can,” Borgisi said. “Daily life is just not typical in any way.”
“What Explore & More is doing is, as far as I know, the only thing like it,” he added. “I don’t know of any other activities that are THAT structured for our kids.”
The local program was pioneered by regional autism advocates, including Jana Mertz, program coordinator at the autism center at Children’s, who toured a Florida children’s facility and noted that it had autism-focused programs for kids, and Dr. Kathy Ralabate Doody, assistant professor of exceptional education at Buffalo State College, Hartley-McAndrew said.
“There was really a need,” she said. “There wasn’t an opportunity for children like this to go to a place like Explore & More and feel free.”
One primary element of the evenings is their tailoring toward autistic kids, with sensory-friendly activities designed to appeal to kids with autism, who often crave added stimulation or sensory-focused activity.
“They have sensory stations the kids can go through that are very tactile,” said Kauschinger, whose family has attended two of the evenings so far. “It’s very tactile and sensory-driven. [The kids] need stimuli – they are very sensory-driven, and stimuli are very important to them.”
The reason for the tactile, sensory-driven nature of the evenings is to provide an environment that will calm autistic children, not overexcite them, Hartley-McAndrew said.
“They may have sensory-soothing activities, sounds that are very soothing ... ways that they can play that are very soothing,” she said. “Children with an autism spectrum disorder like to engage in similar activities – it’s nice that they can go back and feel comfortable with the environment.”
“We want the children to be comfortable and the parents to be comfortable as well,” she added.
Another aspect of the evenings that makes them stress-relievers for parents is the number of staff members on hand, from both Explore & More and Children’s autism center, who are specially trained in working with children with the spectrum disorder.
“There’s a lot of staff there,” Kauschinger said. “The heavy staff [level] is really appreciated.
“The kids roam about – it’s a place you don’t have to be right on top of them.”
The reaction from parents so far has been very positive, Hartley-McAndrew said. “The first night, some parents were tearful, because their children had this opportunity,” she said.
And the program seems to work wonders with the autistic kids, according to Kauschinger.
“Kids are very rarely having meltdowns there,” the Elma mom said.
The organizers behind the East Aurora program said they would love to see the idea spread throughout the region, providing more and more opportunities for autistic kids to get out, socialize with one another and their friends and families, and have some stress-free fun.
“We want to use this as sort of a springboard,” said Hartley-McAndrew, “to create more opportunities for our children.”
The next “Au-Some Evening” will be from 5:30 to 8 next Friday. To reserve a spot, call 332-4170.
To learn more about the “Au-Some Evenings” program, visit the Explore & More website at www.exploreandmore.org.