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Tuesday, March 2, 2021

Diagnosing Autism During the Pandemic Is Hard

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. 

Dr. Heidi Feldman, a professor of developmental and behavioral pediatrics at Stanford University School of Medicine, said ... that first-time parents who have been operating in the increased isolation of the pandemic may have very limited context for appreciating where their child’s behavior falls. They’re missing the input they might usually get from teachers and child care providers.

 Dr. Eileen Costello, a clinical professor of pediatrics at Boston University School of Medicine and chief of ambulatory pediatrics at Boston Medical Center, said, “Especially for the really little ones, the only eyes that are on them are their parents’. They’re not seeing uncles and aunts and cousins, not in preschool.”


Catherine Lord, a professor of psychiatry and education at the University of California, Los Angeles, said, “I’m doing diagnoses right now in my back yard, which is insane.” But with the protective gear that would have to be worn at the hospital, she said, “we look like we’re from outer space,” and could be too intimidating to small children.

Dr. Lord said. “We do remote interviews with parents, we try to see videos of the kid, then have them come — we have a big back yard.” And they continue to use the Zoom technology, even across the yard.

The standardized assessment for autism spectrum disorder can’t be done masked, because it depends on interpreting the child’s expressions and observing reactions to the examiner’s facial expressions. Dr. Lord said there is a shorter version that children can do with their parents — everyone unmasked — while the clinicians watch without being in the room. This may not be as accurate — researchers are still analyzing the data — but they are hopeful that it will be helpful in many cases. 


Dr. Lord was the lead author on a review paper on autism spectrum disorder published in Nature Reviews in 2020. She emphasized the importance of early diagnosis so that children can get early help with communication: “Kids who are going to become fluent speakers, their language starts to change between 2 and 3, and 3 and 4, and 4 and 5,” Dr. Lord said. “We want to be sure we optimize what happens in those years and that’s very hard to do if people are stuck at home.”

Dr. Adiaha Spinks-Franklin, a developmental behavioral pediatrician at Texas Children’s Hospital and an associate professor at Baylor College of Medicine, notes that the pandemic worsens inequalities. Poor families may not have access to high-speed internet and -- as always -- have trouble accessing providers.

“Now, she said, the pandemic is placing those families even more at risk, because of the likelihood of economic hardship from jobs loss, underemployment or lost health care benefits. The disparities are exacerbated, and the chance of getting to the right clinic and the right health care professional go down.

Right now, because families are isolated or may not have good access to medical care, neurodevelopmental problems may be being missed in these critical early years, when getting diagnosed would help children get therapy. On the other hand, some children who don’t have these underlying problems and are just reacting to the strange and often anxiety-provoking circumstances of pandemic life may mistakenly be thought to be showing signs of autism.