Remembering Autism Advocate Feda Almaliti
It is with incredible sadness that we learned of the passing of beloved autism advocate Feda Almaliti and her 15-year-old son, Muhammed, who was called Mu by the many who knew and loved him. The Bay Area house in which Feda and Mu lived caught fire in the early morning of September 26; Feda was able to escape along with her sister and niece, but when Feda realized Mu was not with her, she ran back into the flames. Mu, whose affection for his mother was legendary, was big and strong and surely very scared, and Feda was unable to carry him or to persuade him to go downstairs. So she stayed with him, her arms wrapped around him, but by the time the fire department reached them it was too late.
Because of Feda’s advocacy, California Senate Bill 946 became law in 2012, mandating that insurance companies cover treatment for autism, including ABA therapy. You can read about the origins of Feda’s fight for coverage, which began with Kaiser, here, and read some of her blog posts and stories here. In May of this year, Feda spoke movingly with NPR about the difficulties of parenting a child with severe autism during the pandemic. She also wrote an essay on the subject that said, in part: “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.”
Of course, Feda did far more than focus on getting her family through each day — her work also buoyed countless other families raising children with autism. The National Council on Severe Autism (NCSA), of which Feda was vice president as well as a founder, wrote a beautiful tribute to their friend and colleague, which we urge you to read. Her friend Jill Escher, president of NCSA, spoke about Feda with NPR on September 28. Feda had just turned 43, and according to NCSA, had many more plans to help create new autism programs and conferences. Along with her work on the boards of NCSA and the Autism Society of the San Francisco Bay Area, Feda had recently started a podcast, and was also writing a book called #AutisticAF, the title of which reflects her characteristic sense of humor. Some of us at Special X had the great fortune to hear Feda speak at a SELPA conference a few years ago and remember how quickly and deeply she touched everyone who met her, bringing laughter as easily as she could bring tears.
Feda was the kind of person whose life and work affected more people than is possible to quantify, and she was surely that kind of mother. She and her son will be hugely missed.