‘An early diagnosis is very important’: When it comes to autism, testing at the first signs can change a child’s life

When I told a simple, innocuous but hilarious joke to my nephew, he stared at me with an expression so blank that it reminded me of Keanu Reeves in, well, pick a film.

“I’m just a very serious guy, Uncle Ed,” Danny said.

After I was 3 feet from Danny, I heard strange, childlike noises emanating from his mouth, which sounded like an overstimulated Curly from the Three Stooges but an octave higher.

Serious guy, no. Serious problem, yes.

When I told my 18-year-old son Eddie the story, he cracked up, but it’s no laughing matter. Danny is autistic. However, my sister-in-law, Joanne, refused to deal with that reality.

Offering advice to someone about how to raise their child goes over about as well as spilling a drink on a person you would like to impress. It doesn’t matter if you’re related to the person you’re delivering parenting views to, and that can make it even worse.

There was always something not quite right about my nephew. Danny was always a nice kid, but he was often socially inappropriate, imperceptive and would make bizarre sounds.

When I mentioned to Joanne that her only child might be on the spectrum, she was deeply offended.

“You’re saying something is wrong with my Danny, but what about your kids?” Joanne said. “Look how wild they are. Your boys run around and beat each other up and break things. Look at them! They must have ADD, and you’re singling out my kid. There’s nothing wrong with my Danny!”

I’ve become expert at repairing shattered windows, and a friend once described my home as total mayhem. My kids are flawed. Up until recently, my 14-year-old son Milo welcomed showers about as much as homework.

Danny, who was obese throughout much of his childhood, managed to graduate from high school and found part-time employment at a supermarket handling the carts.

Three years ago, Danny’s mother drank herself to death. He didn’t want to live with his father, who divorced his mother when Danny was about to enter the first grade. Danny’s father didn’t bang down the door to help anyway after finding out his ex passed on. Danny could exist in an apartment, but considering his anxiety and other issues, I offered the opportunity to live with us.

It wasn’t Danny’s first choice. Living in a house filled with cacophony and chaos paled compared with residing with one of his other relatives. However, none of the empty nesters with spare bedrooms stepped up.

The silver lining was that I could have Danny tested. Doctors revealed that he is indeed autistic. Being vindicated didn’t inspire a celebration. I was disappointed to discover that there aren’t many social services for those older than 21.

That’s just one reasons to test a child who might be autistic early, according to Dr. Oksana Hagerty, who is an educational and developmental psychologist and assistant director of the Center for Student Success at Beacon College.

“An early diagnosis is very important,” Hagerty said while calling from her Leesburg, Florida, office. “That way services can be provided as soon as possible. A child’s life can be very different by meeting with health care professionals early on.”

A huge reason my sister-in-law refused to accept the possibility that her son was not neurotypical was due to her romantic vision of the ideal offspring.

“It’s not easy for a parent to accept that their child is not perfect,” Hagerty said. “We always dream about having perfect children, and it’s not easy when it doesn’t work out that way. However, it’s a parent’s responsibility to do what’s best for their child.”

Hagerty believes too many parents shield their children from reality and protect them in a bubble, which does more harm than good.

“Some parents with children on the spectrum completely helicopter them, and they don’t realize how much that doesn’t help them,” Hagerty said. “If a child doesn’t like to be in a crowd or be touched, they keep the children from experiencing that. The kids are overprotected. Instead of building a tolerance for the environment, the child just gets what he wants, and who does that help? It has to be about the children developing.”

Devices don’t help kids morph. “Screen time prevents children from engaging,” Hagerty said. “Screens don’t teach kids anything. It makes the evening more bearable for the parents. But any kids who are on the spectrum or are ADD should take a break from screens.”

The number of autistic diagnoses is up to some degree due to parents having their children tested. According to Dr. Karen Heffler, a researcher for Autism Spectrum Disorder at the Drexel University College of Medicine, 1 in 54 children are autistic and 1 in 34 are boys.

“There is more awareness of autism now,” Heffler said from her Philadelphia office. “Fortunately, parents aren’t ignoring signs of autism like they used to.”

As early as 18 months, parents can see signs that might indicate a child is on the spectrum. At that point, a child should respond to their name, smile when smiled to and be babbling.

Candice Greenlee, a fifth-grade teacher at Connections Academy in Tumwater, Washington, has a 10-year-old son with autism who was tested at 18 months. Her son, Ford, is making great strides, but her old-school pediatrician was reluctant to apply the autistic label.

“When I told our doctor that our son was autistic, he said it was a matter of opinion,” Greenlee recalled. “Doctors from an older generation think they’re doing a kindness, but they’re actually doing a disservice if the child is actually on the spectrum.”

Greenlee kept the pediatrician but sought out all of the benefits for her son, who is a well-adjusted fifth-grader. “Ford loves to swim and can tell you every little detail about sharks,” Greenlee said while calling from her Gig Harbor home. “My son has grown into his autism. He has to know he’s autistic to get the support he needs and have the ability to support himself.”

What parents of autistic children have in common with parents of neurotypical kids is the hope that each will one day be independent.

That brings us back to Danny, who has taken advantage of the few social services available to him after becoming an adult. The Beatlemaniac, who adores Ringo Starr, has been seeing a therapist and is improving.

His repetitive behavior, relentlessly signing autographs on magazines, cereal boxes and even his steering wheel, has abated. With each month, his anxiety level has dropped, and he has become stabler. Danny, who is no longer obese, just a bit overweight, was hired by FedEx a few months ago.

Unemployment is at a record high, but Danny works 50 hours a week, an even split with FedEx and the supermarket. It’s been quite a remarkable transformation for a kid who managed to keep it together despite a hardscrabble and unpredictable childhood.

It could have been a very different story for Danny if he had received the necessary services as a child.

“I can’t do anything about that, Uncle Ed,” Danny said. “All I can do is do the best I can do now. I’m working hard as I can, and I’m doing all that I can for myself.”

You’ve come a long way, kid.