Nebraska proposes universal autism testing

Cris Petersen credits a University of Nebraska-Lincoln (UNL) childhood study she joined with her infant seven years ago with identifying her son’s autism — although the diagnosis didn’t come right away.

Petersen’s son, Max, was born early, at 35.5 weeks of gestation. He was nonverbal and not potty trained at the age of 3, but when she took him to the Lincoln school district for testing, the staff told her he was simply delayed. The district worked out an individualized education plan for Max and he began receiving some therapy, but Petersen said they saw no improvement. Only later, when Max was 4, did UNL researchers conducting six-month checkups on the boy determine he had autism.

Nebraska lawmakers are considering a bill they hope would promote early diagnosis of children with autism. The bill would require incoming public school students to have an autism screening before starting school. Experts cheer the idea of further screening but also worry it could overburden the system of support for students with autism.

The U.S. Department of Education first classified autism diagnoses as eligible for government-funded special education services in 1991. People with autism face a wide-ranging variety and severity of symptoms, often including some form of language delay and difficulties with social interaction. They may have an intellectual disability. In 2000, about 1 in 150 8-year-olds had an autism diagnosis. The latest data from the Centers for Disease Control and Prevention indicate that, in 2018, 1 in 44 8-year-olds had the disorder.

Dr. Arun Karpur, the director of data science and evaluation research at Autism Speaks, an advocacy organization, said that children as young as 18 months can be diagnosed with autism. But the average age of diagnosis is just under 4.5 years old, according to the CDC. Karpur said difficulties with insurance coverage or finding a qualified testing provider can delay the diagnosis.

The American Academy of Pediatrics (AAP) recommends healthcare providers screen children for autism at their 18- and 24-month well-child checkups. These screeners are usually parent questionnaires. If the parent’s answers on the questionnaire point to signs of autism, the healthcare provider can then refer the child for diagnostic testing to confirm or refute the screening results.

Dr. Kristin Sohl, a practicing pediatrician in Missouri, is the chair of the AAP’s Council on Children with Disabilities Autism Subcommittee. She said the screener questionnaires filled out by parents can be subjective, and that it isn’t uncommon for students with autism not to be identified before starting school.

Susan Hepburn, a Colorado State University professor and clinical psychologist, has worked with autism identification clinics and worked with the Colorado Department of Education on screening and identifying children with autism earlier. She said that research has repeatedly shown that early intervention, especially in areas like social interaction and communication, can dramatically help children with autism.

“There are also a couple of papers in the field that suggest that the younger you are, the more plastic your brain is, the more it can change with new information,” she said, adding that some studies suggest that later intervention may still be helpful, though less so.

Hepburn noted the goal of screening is to catch any children who might have undetected autism. But inevitably, the screening will result in some false positives, where a child flagged for further testing turns out not to have autism after all.

According to Sohl, that problem means that universal screening will result in higher numbers of parents seeking diagnostic testing for their children after a positive screening result.

“You’re going to flood the medical system with questions for diagnosis that may or may not be necessary,” she said. “The idea is a great one, but you need to think of the upstream and downstream consequences of that great idea. How will that impact the families and the medical and educational system?”

Jeff Powell, interim deputy director for the Nebraska Department of Health and Human Services, said in an email that the agency has not taken a position on the autism bill.

As for Petersen, she credit’s God’s providence for helping her find resources for Max. She said she saw a difference in Max within 30 days of starting autism-specific therapy. Petersen homeschooled Max for kindergarten and then had him repeat kindergarten in a parochial school. “He just killed it in kindergarten in a fully inclusive classroom,” she said.

Max is now a first-grader, and Petersen said he reads at an accelerated first-grade level. He has speech therapy at school twice a week, and two sessions a week with a resource teacher to work on homework or social skills. Twice a week after school he sees an occupational therapist and a speech pathologist. Petersen said the early start on therapy made a world of difference for her son: “He’ll get promoted to second grade with his same classmates, meeting the same expectations that they had.”