WASHINGTON — Years ago, Mark Newton’s child won the diving ribbon at an event held at the Naval Academy. The toddler was cute.
There was something else. Newton, now a father of four, said his daughter so buoyed his spirits, she put a “halo” around him. It was then he realized that nothing in his life before that day was putting the “sparkle” back in his life.
He didn’t want his kids experiencing that stage, “that shame.”
In response, Newton and his wife started a family practice. They decided to share their story to help other parents understand the stress of raising kids with autism.
“When people come in to get checked, they always put their hand out and tell me ‘no’ before they see a child with autism,” he said. He believes that’s misinformed.
On Thursday, they hosted a Children With Autism Innovation Day at the Navy Yard Community Center. Newton took questions about what it’s like to be on the child’s side. Parents of kids ages 6 months to 6 years, and other autism and mental health providers, weighed in. The discussion is part of a two-day conference, “Building the Nation’s Next Generation of Children with Autism,” that examines autism research and provides resources for advocacy and services for children.
“It’s about the children and what they need,” Newton said, “not about you as a parent or other caregivers.”
Bridget Willard, president of the National Association of Autism Intervention Providers, said parents of kids with autism experience a “huge weight lifted when they meet a child.”
“For an hour, your world shifts and you see the child,” she said. “All of the insecurities go away.”
Nextel Tandis said attending a public forum is a “booster” for her, as a parent of a boy with autism.
“Having a space where families who are dealing with this together can come together and share experiences helps us,” said Tandis, the director of integrative behavioral treatments for Children’s National Medical Center.
Brooke Peluso, a patient navigator for Autism Speaks, agreed.
“It’s a social experience,” Peluso said. “I’m able to ask a lot of questions as a parent and someone who does work with families.”
She said it can feel like there’s a disconnect.
“A lot of people think autism is always related to social issues,” Peluso said.
“That’s hard to grasp. Autism is not about getting better at interacting. It’s about being responsive to someone who is observing you. And that can be really awkward or challenging for some people.”
There are about 1.4 million children in the United States on the autism spectrum, according to Autism Speaks. Some children, like Winston, are like Mark Newton’s daughter. Some are less noticeable than that, like Trumpet’s Makai Wong.
Winston was diagnosed at age 4. He’s a 4-year-old who lives in Gaithersburg, Maryland. On Thursday, he was dunking balls at the hands of President Barack Obama.
Trumpet’s mom is hoping to enroll Winston in an after-school program that would teach him social skills and other things, like how to sit and stop crying when he’s angry. But it’s not easy.
“There are so many obstacles,” said Jessica Wong, Trumpet’s mom. “One moment you can see them smile, and the next moment you can’t.
For Winston’s dad, emotions come with it.
“I’m letting out a tear every time I see him,” Newton said. “It’s so hard to watch your child not want to be there, not want to be with you.”