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Feda Almaliti Wrote About the Grueling Challenges of Covid Restrictions on Autism Families

Autism RealityBelow is an article written just a few months ago by Feda Almaliti. Feda died in a house fire over the weekend, with her 15 year old son Muhammed. I read on Facebook that she went back into the house to get her son, but he would not go down the stairs to exit.  The article she wrote talked about the impossible challenges of parenting a child, a teen or for some of an an adult (or 2 or 3) with autism. Talking about the hardship doesn't mean we don't love, respect and cherish our children. Our family members with autism. The only way to effect change, to increase funding, to create new programs, is to talk about the needs of the community. God rest Feda and Muhammed's souls.

Life with an autistic child can be difficult. During a pandemic it can be grueling

By Feda Almaliti, May 2020

Life with an autistic child can be difficult. During a pandemic it can be grueling

he 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...  Read more at StatNews.


Carolyn MomAsd

Feda’s death struck me the way Trevor Martin’s death must have struck moms of African American teens who likes skittles and wore hoodies.

It could have happened to anyone with an ASD child. Even my child, who is high functioning “ bulks unexpectedly from high stress situations. And he is bigger than me and I love him and I would have stayed with him too.

For some reason this story encapsulated the sacrifices every family with autism makes. Evy day. We run back into the fire with them at any cost. And some days we can coax them out and some days we, too, get burned, watching the lives we planned for our family go up in smoke. Love wins and we adore our children. But our sacrifices are invisible and unimaginable and daily moment by moment and even our larger family doesn’t get it because we don’t want our ASD child to feel he or she or they are burdens or not loved. So we put on a brave face but hopefully curse a lot like Feda did , if that helps, and hopefully find other parents or siblings who get it. This has inspired me to try harder to find other parents to get and share strength and laughs with as Feda clearly managed to do. What a hero and an inspiration she still is.


Age of Autism really is hitting the punctuation point about what is important .
What a sad horrible tragic loss of life .
Do the Fire Brigade do any situational training for this? Don't know not sure?
A fifteen year old backed into a corner in a smoke filled room can display the strength of five adults through fear !
What techniques will the Fire Brigade use to get that person removed to safety ?


Carers bedtime checklist
Supporting Fire Safety in the Home

Beleaguered Autism Mom

All of us are the poorer for Feda's death. Especially those with severe autism. Thank you for posting links to her writing. Her son Muhammed's death is just one horror story among many that haunt people like me.

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