When it comes to autism, intervening well before the start of school can make a big difference in a child’s academic progress and quality of life. That’s why legislators in Nebraska are considering making autism screening as much a requirement for the start of school as a physical exam or a vision test.
If the bill is approved, Nebraska would become the first state to require autism assessment as part of pre-school health screening, though special education advocates have long fought for better and earlier screening. While federal law requires districts to identify and evaluate all children with disabilities, it does not specify `how early or often states must screen for disabilities.
That means Nebraska’s bill could become an experiment for states and districts facing an all-time high in autism.
“Autism used to be a low-incidence disability ... but it is no longer considered low incidence; schools are seeing it [regularly]. In any typical 3rd grade class, we can expect to see at least one kid with autism,” said Jennifer Hall-Lande, a psychologist and research associate at the Institute on Community Integration and Masonic Institute on the Developing Brain, both at the University of Minnesota.
One in 44 8-year-olds nationwide have been identified with an autism spectrum disorder, according to the most recent data, taken from a Dec. 21 report by the federal Autism and Developmental Disabilities Monitoring Network. That is an all-time high, and autism experts attribute part of the steady increase to better and more widespread screening, as well as environmental, genetic, and other factors. However, identification ranges widely, from as few as 1 in 60 children in Missouri to 1 in 26 children in California. Only 4,739 children were identified with autism spectrum disorders in Nebraska as of 2021, significantly below the national average, according to Nebraska’s Autism Spectrum Disorders Network.
While there is no overall identification difference by race or ethnicity, 8-year-old boys are more than four times as likely to be diagnosed as girls. About 35 percent of children with autism also have intellectual delays.
If passed, Omaha Sen. Jen Day’s bill, known as LB997, would add autism screening to the standard physical and vision screenings required for all children before kindergarten or when transferring from another state. The proposal would require a trained screener—including a doctor, school nurse orpsychiatrist, among others—to use an evidence-based and developmentally appropriate screener.
The screening proposal is based on a program developed in the 24,000-student Millard public schools in Omaha. Jean Ubbelohde, early education coordinator at Millard, said the district began autism screening before the start of school and at 18, 24, and 30 months, after surveys found a significant portion of pediatricians and family physicians in the area were not following guidelines from the American Academy of Pediatrics, which call for autism screening at 18 and 24 months.
“Even more disappointing was [doctors] who were using it and were getting a high score [indicating the potential for autism] on that screener didn’t know what to do with the information with families,” Ubbelohde said.
That’s not uncommon. Hall-Landis said research shows about half of pediatricians use a validated screening tool and schedule. “There’s challenges of time, there’s challenges of billing,” she said. “And so, even with strongly worded recommendations from organizations, such as the AAP guidelines, kids are still falling through the cracks.”
Nationwide, children with autism are identified around age 4 on average, but there is an average wait of a year between an autism screening flag and a full medical diagnosis, according to Dr. Jeffrey Okamoto, a developmental-behavioral pediatrician at the University of Hawaii at Manoa medical school and the Hawaii Centers for Disease Control and Prevention’s “Act Early Ambassador” for autism outreach to families. Pandemic-related school and medical disruptions have led to even longer delays for both identification and planning for individualized education plans in many cases, he said.
And screening capacity, both financial and professional, has been limited. Earlier this month, Texas became the last of the 50 states and the District of Columbia to include autism therapies in Medicare coverage, more than seven years after federal health-care requirements called for it. Forty-seven states and the District of Columbia require health insurers to cover at least some autism-related expenses.
Months or years make a difference in long-term success
Heidi Sommer called her local school district when she noticed her 16-month-old son Hayden had only learned a few words.
“We knew something’s off here, because he has a cousin that is four months younger and he just took off talking,” Sommer said. Hayden was identified as developmentally delayed and provided with speech therapy, but, she said, “we were told multiple times, ‘He’s a boy; he’ll catch up.’”
He did not catch up. It took another two years for her son to be identified for autism, rather than general developmental delays, and longer to begin holistic services, including occupational and behavioral therapy and additional screenings. Now 18, her son has been diagnosed with Phelan–McDermid syndrome, a rare and progressive genetic disorder associated with autism as well as other medical issues. The severity of his condition has meant ongoing struggles with communication and relearning skills lost to the disorder. Sommer regrets that her son lost months and years of early interventions to improve his progress.
“Early years are a critical period for brain development. Birth through 5 there’s significant changes in the structure and functioning of the brain,” Hall-Lande said. While more general interventions for developmental delays are “good,” Hall-Lande said, they are often both less frequent and less intensive than those provided for autism.
“Saying ‘let’s wait and see,’ means the kids are not receiving targeted interventions for some of their specific needs around autism,” she added.
Also, Hall-Lande said, families of children with autism show better mental health and parenting skills if they are connected early on to other families with autism.
Sommer, now an earlyeducation specialist for Parent Training and Information Nebraska, a statewide organization for families of students with special needs, said she sees many families whose children are not fully diagnosed with autism until middle school or beyond, even if educators and parents suspected for years.
"[Educators] are human and it’s really hard to have that conversation. It’s hard to look a parent in the eye and say, ‘I think your kiddo might have autism,’” Sommer said.
But school districts need to train staff to have these difficult conversations. Not doing so, she said, “keeps parents in denial. There’s a phase of grieving when there’s something different about your child, and the more that you get told, ‘he’s a boy he’ll catch up,’ the more you want to latch onto that because that means he might be OK.”
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