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.
All of this is made even more complicated by the fact that Mu does not understand the reason for these changes.
For a time, we were able to stay active and get fresh air by taking walks. That ended when Californians were required to wear masks when they were out in public: Mu refuses to wear a mask. It’s also almost impossible to get him to wash his hands for 20 seconds.
The most heartbreaking part of this is that Mu’s limited ability to communicate means it is difficult to address his needs. His augmentative and alternative communication device, basically an iPad with an app that lets him press audio-linked picture icons, makes a huge difference, but it only goes so far. I’ve begun noticing that Mu seems to be having problems with his vision, but he can’t put into words what is wrong and we aren’t able to see a doctor. I am terrified of what might be happening, but there’s nothing we can do about it for the time being.
Autism comes in many different forms, so my family’s experience by no means applies to all families, but it does illustrate how aspects of life that are already a struggle are magnified at this time.
Years ago, a University of Wisconsin-Madison study showed that autism mothers experience levels of stress comparable to those of combat soldiers — and that’s without a global pandemic.
I fully recognize that this pandemic is unprecedented in our lifetime, affecting all areas of life. Multitudes are working diligently to minimize its spread, heal those who are infected, find treatments and vaccines, and provide for our basic needs. At the same time, people like my son need accommodations that go further than what we’ve seen.
In the United Kingdom, the National Health Service says it’s OK to leave your home once a day to exercise, while those with autism can leave up to three times. That gives families valuable flexibility in addressing a disorder that can take so many different forms. In the U.S., grocery stores, pharmacies, and other stores have implemented “senior hours” to accommodate some of the most vulnerable members of society. It would be most helpful if similar exceptions could be made in public spaces for those with an autism spectrum disorder or other intellectual disabilities.
In the same way, caretakers and therapists who work with autistic individuals need to be seen as essential workers. Their interventions have been life-changing for Mu and so many others; going without them for a prolonged period will harm their chances in life.
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.
Feda Almaliti is the vice president of the National Council on Severe Autism, vice president of Autism Society San Francisco Bay Area, and the mother of three sons, one of whom has severe autism.
Ongoing support seems critical for families like yours. It’s probably hard when people respond with easy answers when you are running such a marathon. I can only say that I learned from your story and I support the immediate return of support services.
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