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.
Ms. Feda, i have read your story and will pray for you and your family. I can only begin to imagine how much work you do and how tired you are at the end of the day. I am sure your son loves you as you love him.
Blessings.
m. jolly
Thank you for expressing this huge problem so well. My grandson is 4. He does not understand why no ABA among all his other losses. I hope every day this crisis will end for everyone, our special ones especially.
Thanks for writing this! My severely autistic son desperately needs programs to return. Perhaps not group activities that could engender spread, but there MUST be ways to do this safely in 1:1 or smaller groups focused on the outdoors. We need reasonable exceptions to Shelter in Place and action NOW to help families burdened 24/7 with the combat-level trauma of severe autism.
You can take a walk without a mask as long as you can remain socially distant.
TACA (The Autism Community in Action) is a parent-driven advocacy group with chapters in most states. TACA provides education, support and hope to families living with autism, so individuals diagnosed with autism can lead an independent life.
After some protests & publicity, special retail hours for “seniors & special conditions” now also covers the handicapped in any form & pregnant women…
Excellent article on the challenges you and many families are facing. There are many more. Accomodations need to be made NOW. At least the accommodation finally was made to allow a support person to accompany the disabled person into the hospital if they had covid. Our direct support people eg respite workers IHSS workers SLS staff should be given enough PPE equipment to enhance their safety. Our kids should be allowed outside without a mask but hopefully they can maintain social distancing otherwise some will get very upset resulting in verbal and sometimes physical confrontatons as seen on the news. Perhaps going for walks in unpopulated areas if possible? Caregivers should be considered essential workers and receive hazard duty pay, and overtime exceptions to reduce the number of caregivers coming into the home. Thank you for writing this article
Great ideas! Clear and concise explanation of Mu’s disabilities. Yes, special needs therapists and caregivers should be considered essential workers. Yes markets should have hours for special families. Concrete suggestions are always a good idea. Yes! And thank you.
Excellent article. I am the father of three boys, a 15 year old with autism (non-verbal), a 13 year old with Down syndrome (non-verbal), and a typical 17 year old graduating from high school. In all of the talk from our various governments, it truly feels like our special-needs children are forgotten.
– As you point out, masks are required in our state, which many will not wear.
– My children also go to school during the summer, but we have no idea if the summer programs are on or off.
– Playgrounds are closed, so we cannot even go for walks in parks where there is playground equipment because my boys don’t understand that they cannot use it.
– “School” is basically a joke. More recently, our school has started therapy via Zoom. Needless to say, physical therapy is not something that can be done by Zoom.
– Even some doctors have become less sympathetic. We recently could not get our son’s medication changed without a teledoc visit, and the first available appointment was six weeks out.
These examples only scratch the surface of life during quarantine. With as much progress as has been made with laws like the ADA, it is amazing how quickly people with disabilities are forgotten and/or (even worse) ignored during times of crises.
Frankly, I have taken my son out without a mask at times. If I were ever cited (ticketed? arrested?), I would relish the chance to challenge these quarantine laws under the ADA–i.e., is never leaving the house a reasonable accommodation?
Oh AC….I’m just waiting for someone to pick that fight with me 😉 Thank you for your comments & hope you and your boys stay safe.
Feda, My 21 year old boy is also severely autistic. He sounds a lot your boy and is mostly non-verbal, but he also has significant self injurious behaviors and can often hurt others (he fractured my wife’s vertebrae when he was about 17). He would put his head through walls, and break things like ipads on his head so that didn’t work for us either. But what did help a lot was sign language. He is not conversational with sign because that is not how his mind works, but he can express his wants and needs better and he was able to pick up around 500 words from a young age and retain them. He uses about 50 signs regularly and it doesn’t require peck books which can be restrictive and also used to hurt himself. So you may want to try signing and have your family learn it too. Best wishes to you and your family to this very difficult time. Neil
Thank you Neil. Best wishes to you and your family as well. #StaySafeStaySane
Feda Beautifully and Painfully written.
My daughter Madison Is 20 years old although severely disabled by autism has been having severe Obsessive Compulsive Disorder. She is obsessed with shopping for movies and stuffed animals. The state law with sheltering in place has left her frustrated and upset. Her frustration causes her to scream and yell and becomes impulsive and runs outside. At this point she outweighs me and both our anxiety is on high alert. It takes two people at least to keep an on on her safety. I’m exhausted and worn out. Thank you for validating the the amount of care it takes to keep our kids healthy and happy. My daughter misses her friends and teachers that keep her on track and calm. When her schedule is gone she is thrown into anxiety and panic.
Essential workers need to be put in place no parent should be put in this position!
The stress eventually breaks down families and this leaves the community in shambles.
Prayers to all families left to pick up the pieces of a broken system.
Sincerely,
Jan Kasahara