At nearly 2 years old, Maximo Daniel wasn’t like his peers.
“We noticed Maximo was more sensitive to some things than other kids,” says his mother, Jennifer. His speech was also delayed, but because he’d had hearing challenges that had affected his speech, Jennifer didn’t want to jump to conclusions too quickly.
She waited until after he had surgery on his ears. When she didn’t notice any changes after that, she consulted with Maximo’s pediatrician andspeech therapist.
“I started seeking resources for an autism diagnosis,” she says. “I believe early diagnosis and early intervention are important.”
Finding SARRC
Jennifer and her husband, parents in a blended family of six children, understand how long the road to an autism diagnosis can be. When they sought help for their now 4-year-old son, Alejandro, it took about six months before they had a diagnosis.
“We didn’t know the process then, and we didn’t work with SARRC,” she says. “But with Maximo, we knew the steps.”
This time, the family reached out to SARRC and learned how to use NODA as part of the evaluation and diagnosis process. The Naturalistic Observation Diagnostic Assessment (NODA) lets parents record videos on their phone and send them to SARRC for analysis.
A diagnostic evaluation for autism includes three required components: a developmental history, direct behavioral observation and a quantitative measure of delays. A standard part of SARRC’s evaluation process for all children age 7 and younger, NODA is the direct behavioral evaluation, letting parents record their children’s behaviors in certain situations in their natural setting, at home.
Then, families provide information over the phone for the developmental history, and a questionnaire is used to better understand the child’s milestones for the “quantitative measure of delay” component.
“When we developed NODA in 2015, it was controversial,” says Christopher J. Smith, Ph.D., SARRC’s chief science officer. “But we focused on the fact that NODA doesn’t replace the diagnostician. In fact, NODA relies on the clinical expertise of the diagnostician.”
Through his recent research, Dr. Smith has found that families who use NODA vs. in-person evaluations can complete the diagnostic evaluation in about a third of the time.
For the Daniel family, the process was straightforward and simple.
“They talked to us about NODA,” Jennifer says. “We started at the end of November and had the diagnosis by January 9th.”
NODA was especially helpful for Jennifer. “You can take the videos at any time, and I think it was better for me,” she says. “I didn’t have to find a babysitter. And I didn’t have to worry about whether Maximo would behave a certain way at an evaluation appointment. NODA lets you check in with the kid at home or at school — wherever the behaviors are happening.”
Finding support
With a diagnosis in hand, Jennifer has felt empowered.
“A diagnosis means answers. When you don’t have it, what can you do? You don’t know which way to go,” she says. “We as parents need resources too. We need to talk to someone too. We need to find solutions and help our kids.”
She’s been exploring various intervention options for Maximo, who turned 2 in December 2023.
“We go to family centers right now to seek out activities. We want to try as much as we can to see what works,” she says.
For Jennifer, familial support has been an uphill battle over the years.
“My husband and I come from Mexican families,” she says. “When Alejandro was diagnosed, it was pretty tough. I could see that my kid was different, not playing with other kids, not talking. The first thing I thought was he was sick — that he wouldn’t be able to do anything. I had a lot of feelings.”
She set to work trying to find resources and to learn more. Meanwhile, family members suggested he was just “lazy” and to “give it time.” Other family members started praying for the child.
“It was tough because I didn’t have anyone to talk to about it,” Jennifer says. “We spent about a year fighting with our families — fighting for them to understand he’s not sick. He’s different.”
But with Maximo, Jennifer and her husband’s families are more understanding.
“We already have family support,” she says. “They buy sensory toys for the boys. All of my kids are doing sign language. My parents also started taking sign language. They are trying.”
Some older studies found that Latino parents may have had less access to information about autism and that there is a stigma around the diagnosis that was leading to delays in seeking help. Some of that appears to be changing over time, and Jennifer hopes to educate her own family members and others around her.
“I know it’s hard for them to understand. It takes time,” she says. “I was lucky to grow up in a more open-minded world. And we’re taking it step by step.”
Looking ahead
Jennifer wants to see Maximo and Alejandro — and her other children, too — become independent adults. And she is confident that will happen.
“When I talk to other parents in my culture, I want them to feel that it’s OK. Our kids with autism are healthy. They don’t need to play with other kids right now. They will hug you — but later — and that’s OK,” she says. “I try to explain it like this: One of my sons has really curly hair, and one has really straight hair. The curly hair takes me more time and is more expensive to manage and takes more patience. But they all get their hair done.”
She wants parents to understand that autism is not a sickness.
“They’re different. They have different characteristics. I see autism as nothing bad. It’s just like having curly hair,” she says.
In her very limited free time, Jennifer is working on a book to help other parents. She hopes other families will fight past the stigma of autism and work to get a diagnosis and early interventions — because she knows that kids with autism are capable of living wonderful lives.
“We need to know that we can do this,” she says. “Our kids will become functional adults with careers and families. It’s just going to take a little more time.”
Story by Stephanie Conner