The Centers for Disease Control and Prevention estimate that 1 in 68 children in the United States has been diagnosed with an autism spectrum disorder.
Research being done at Purdue aims to improve the tools for diagnosis and reduce the average age of diagnosis.
Kids on the autism spectrum have difficulty with social interactions and communication, and parents can start looking for evidence of struggles in those areas from the time kids are 7 months old. IU Health Arnett pediatrician James Bien says a red flag is the progression of social interaction and speech development skills, which then seem to fade.
“So, you know, an 18-month-old who’s been really playing with their voice a lot and using short phrases who then relatively quickly stops doing that and regresses would be something that would be worth further investigation,” says Bien.
He says the earlier a child is diagnosed the better because there are therapies and interventions that can help them reach their full potential.
The Infant Sibling Study at Purdue is contributing to research intended to lead to those earlier diagnoses. The project is led by assistant professor of human development and family studies A.J. Schwichtenberg.
She’s studying babies who have at least one older sibling diagnosed with an autism spectrum disorder—because previous research has shown these children are at increased risk of being on the spectrum themselves. From approximately 15 months old until they turn 3, child development experts regularly assess development and give feedback to parents.
Schwichtenberg says the study recently joined the Autism Speaks: Baby Sibling Research Consortium, which is one of more than two dozen groups in the nation collecting data on some 4,000 families with an autistic member.
She says in addition to measuring the traditional markers of development, each study has a specialty area they focus on. At Purdue, that’s sleep patterns.
“You see patterns in children’s sleep. And a lot of infants follow this very consistent pattern," says Schwichtenberg. "But sometimes what happens is you’ll get an infant who follows a distinctly different pattern. You don’t even have to be an expert. You can look at it and go ‘That sleep doesn’t look like the other baby’s.’”
Schwichtenberg says they gather the sleep data by having each baby wear a small sensor on their ankle and by videotaping their sleep.
The goal is to identify children who may be developing an autism spectrum disorder and give their families important information about how they can help those children.
“Ultimately the families that we have here, their information will join a registry that has over 4,000 families. So with those kinds of number we can ask really big questions.”
Molly Datzman’s 2-year-old son, Max, has been participating in the Infant Sibling Study for more than a year. His 12-year-old half-brother, John Henry, has what’s called Pervasive Developmental Disorder-Not Otherwise Specified, which is the diagnosis for children who don’t fully meet the criteria for autism or Asperger’s Syndrome.
Datzman says every three months Max goes to Purdue, where researchers use play activities to evaluate the toddler’s fine and gross motor skills, language, and social and emotional development.
“They’ll do things like stacking blocks, or putting things in a line, or asking him what this object is, or if he can hand them an object. Stuff like that," says Datzman. "Or they’ll say his name and point to something to see if he responds to his name.”
Datzman says Max hasn’t shown any signs of autism, but she understands how observing him will help improve autism diagnosis and treatment.
“This is what a normal 2-year-old looks like, and then they go back and take that data and they compare it to somebody who might be showing signs of autism," she says. "Just for me it’s the fact that we might be helping somebody down the road someday.”
John Henry has two other siblings besides Max, neither of whom has any developmental delays. Datzman says the kids understand John Henry has challenges and they help him with things he can’t do. Aside from that, though, they’re typical brothers and sisters.
“Stop touching me, stop hitting me, you know," says Datzman. "He touched me, the sky is blue, no it’s red. They function like normal siblings do.”
Dr. Bien says Hoosier children, on average, aren’t diagnosed with an autism spectrum disorder until after their fifth birthday. That’s a year later than the national average. The Centers for Disease Control says research shows a reliable diagnosis can be made as early as two-years-old.
Bien says the states where diagnoses occur the earliest are usually those with a statewide system in place to train medical professionals what signs to look for and tests to use.
He says a team at Indianapolis’ Riley Hospital for Children is in the process of establishing this type of network in Indiana.
“We should have surveillance of development at every well-child check," says Bien. "So, ask general questions about speech development and social development and fine motor skill development. And then formal screening for autism spectrum concerns at 18 months and at 24 months of age.”
Bien says any child who exhibits cause for concern during the testing would be referred for additional evaluation.
“And from that we should start to identify children at a more beneficial age and bring that age down," says Bien. "Five-point-three is the average age in Indiana and, gosh, you’d love it to be below 3.”
Molly Datzman understands the struggles families face due to late diagnosis. She’s hopeful studying two-year-old Max can help researchers bring that number down.