Forefront Communications

STAT News: Life with an Autistic Child Can Be Difficult. During a Pandemic it can be Grueling

Alexandra Hamer

Alexandra Hamer

The coronavirus pandemic has disrupted daily life for most people around the world. It has completely upended it for people with autism and their families.

My son Muhammed — we call him Mu — is 15 years old and severely autistic. He has few words beyond “wanee” (for “I want to eat”), hums and paces incessantly, has the academic skill of a toddler, and is prone to breaking things (we eat off paper plates and have gone through more iPads than I can count).

Like everyone else, Mu has good days and bad ones. But even on his good days, daily life can be a challenge.

The emergence and spread of Covid-19 have further complicated life for Mu. We’ve been cooped up at home since Gov. Gavin Newsom issued a shelter in place order for all Californians six weeks ago.

That means Mu went from going to school every day to being stuck at home. While many of his classmates continue their schooling via Zoom calls, there’s no way to meet Mu’s educational needs that way: Kids with autism often need highly trained special education teachers and one-on-one attention.

Autistic children thrive on routines and strongly dislike uncertainty and restrictions. The changes wrought by the coronavirus pandemic are clearly affecting Mu’s behavior, and I can see him grow increasingly aggressive and stubborn.

His applied behavioral analysis, a form of therapy that works on skill-building and managing behaviors, has also been scuttled. Here’s an example of how this therapy helps: Although toothbrushing seems like a simple, intuitive process to most, there are actually more than 40 individual steps to get from start to finish. Many children with severe autism, including Mu, must learn and master each step before they acquire the skill.

Before the pandemic, we received in-home weekly help from a trained professional to monitor Mu’s progress. This has been halted indefinitely, and trying to do it via telehealth is a grossly inadequate substitute for Mu. I am certain that my son, and thousands of other autistic children across the country, will regress because of the changes wrought by Covid-19.

As it has in the past, the autism community is rallying to support families like mine. Organizations like the Autism Science Foundation are working to compile resources and redirect funding to those who need it most.

I hear talk of a “new normal” but can’t think that far ahead. Like so many other autism mothers, fathers, and siblings — new data from the Centers for Disease Control and Prevention show that autism now affects 1 in 54 U.S. children — I’m focused on finding ways to get Mu and our family through each day.

What would help us now is an understanding that “essential” also means addressing the health, safety, behavioral, and educational needs of autistic children and others with disabilities.

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