How the pandemic is affecting autism diagnoses, early intervention

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ROCHESTER, N.Y. (WROC) — During Autism Acceptance Month, there is light being shed on just how much of an impact the pandemic has had on children with autism and their families. 

According to the CDC, 1 in 54 people identify as having autism. Diagnoses happen at an early age and are incredibly important not only for the child, but also for their families. 

The pandemic has made it more difficult for experts to provide families with early intervention. Instead of providing face-to-face care, something incredibly important for individuals with autism, resources have been shifted online. 

“It becomes very much more difficult if you aren’t able to do those assessments in person. Now you have to do them using telehealth and there isn’t that in-person ability to actually look at the child’s behavior and diagnosis them accurately,” said Lawana Jones, the Executive Director of the Autism Council of Rochester. 

COVID-19 has specifically had an impact on how services are delivered to preschool and early intervention children. 

“It’s a critical time. We know that there is a window of brain development, where synapses, connections, are actively being made, and it’s in that window that you want to have your therapies take place and you want families to learn how they can best stimulate language, how they can best stimulate play, and they can really get that jump start on the future learning,” said Dr. Susan Hyman from the University of Rochester Medical Hospital. 

The pandemic has also resulted in less families visiting their primary care doctors, which also plays a role in diagnoses because primary care is usually where screenings happen. 

“People weren’t taking their children in for vaccinations and for routine visits, so the suspicion of autism and the referral for diagnosis was not efficient,” said Dr. Hyman. 

During the pandemic, assessments for autism started happening virtually. While this works for some families, it created a barrier for many families who don’t have access to online.  

“A lot of our families don’t have access to that technology. Now they have smart phones, right? But if you aren’t a clinician and you’re not a teacher, parents are going to need support to be able to use these tools,” Jones said. “We found this at the beginning of the pandemic, a lot of our EI patients were left way behind.” 

Jones said last summer she saw parents with kids who needed help, but never got online because they didn’t know how to use the technology. She also says the pandemic has brought more attention to the structural inequities and lack of access to technology for certain communities. 

“This kind of just brings a concentrated light now on structural inequities and lack of access for African Americans and Latino families. It always existed, but it was something people just glossed over,” Jones said.

Dr. Hyman says autism diagnoses have been down nationally, but she believes that things look a little different in Rochester. 

“We took advantage of the work our colleagues have done and turned it into an opportunity. We did not think we could use telehealth to diagnose children who live 4 hours from Rochester.”  

For now, many health experts are working to figure out how they can make up time they may have lost with families during the past year of the pandemic. 

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