FREMONT — Feda Almaliti, a mother of three and a tireless advocate for people with autism and their families, who helped shift the healthcare landscape in California, died early Saturday along with her son, Muhammed, after a fire tore through their Fremont home, a close friend said.
As of Saturday afternoon, authorities had not confirmed the deaths to this news organization, but people close to her said a family member informed them of the news.
Jill Escher, the president of the National Council on Severe Autism, said Saturday that Almaliti had a “huge personality” that she used to put everyone around her at ease, even while facing her own challenges of raising a son severely affected by autism.
“She’s just sassy, funny, brash, unfiltered,” Escher said.
Almaliti served with Escher as vice president on the council, as well as vice president of the Autism Society of the San Francisco Bay Area, and on the board of the Mental Health and Autism Insurance Project. She was also a Human Relations Commissioner in Fremont.
“She just was this very positive force to the world. She had this amazing personality, when she was in the room you felt it. You just felt the sun was shining a little brighter and the day was a little better, because you had been with Feda that day,” Escher said, while crying over the loss of her friend and colleague.
“Everyone felt like that about her. She’s irreplaceable.”
All day Saturday, an outpouring of love and grief was taking place online, as people shared memories of Almaliti, her indomitable spirit and her dedication to Muhammed, her 15-year-old son.
Shortly before 2 a.m. Saturday, a fire erupted at the family’s home on Serra Place in the city’s Sundale neighborhood. Fremont Fire Department Battalion Chief Will Krings said when crews arrived they found a “well-involved structure fire,” and the first firefighters began “an aggressive interior fire attack and search.”
The single-alarm fire was controlled within 20 minutes but destroyed the two-story home, Fremont fire Battalion Chief Kyle Adams said. The cause of the fire is under investigation.
— Joseph Geha (@josephgeha16) September 26, 2020
Almaliti was a trailblazer, friends said. She sued Kaiser Permanente for failing to provide behavior treatment for her son, becoming one of the first parents of an autistic child to successfully challenge medical providers and insurance companies, they said.
Her push for comprehensive care for children with autism, such as speech therapy and occupational therapy, helped change California law. She was part of a core group of parents and advocates behind SB 946, a bill authored by then-state Sen. Darrell Steinberg which went into law in 2012 and requires insurance companies to cover treatment for autism.
“We were in this together, we were fighting together, we were warriors. She was bold and fun,” said Karen Fessel, a mother of a child with autism who worked alongside Almaliti on SB 946.
“It was hard to have a child on the spectrum and lord knows her child was very impacted, but she helped me feel not so alone,” Fessel said.
Fessel shared memories of driving up to Sacramento with Almaliti to go to hearings, testify at meetings, and imploring legislators to listen, often by sharing experiences from their own lives.
“Feda has this magic that she could move people with her stories,” Fessel said.
“I smile and I laugh and I think of extremely spirited and larger than life. She would fill up the room. She was not a shrinking violet,” Fessel said.
Almaliti also gave a voice to the parents struggling during the coronavirus shutdown. In a heart-wrenching interview with NPR in May, she discussed the toll the coronavirus pandemic had on people with severe autism and their families, which she first detailed in an opinion article for STAT. She described her son as “an energetic, loving boy who doesn’t understand what’s going on right now.”
“Mu,” she told NPR, was incredibly confused because his school, the shopping mall and parks — his favorite places to go — were all closed because of the virus. Almaliti became emotional when talking about how the isolation was impacting students and young people with autism.
“They’re doing the best they can every day. … But I don’t know how to accurately convey, it’s really hard. … It’s really hard because I almost feel like nobody hears us. Because my son doesn’t really talk. He doesn’t talk. And I’m supposed to be his voice. And no one’s listening to what’s going on for our families,” she said. “You know, no one gets that we are just as vulnerable as coronavirus people. The coronavirus is going to come and go. Autism is here to stay.”
Escher said Almaliti would always throw herself fully into projects and ideas to help others on the local, state, and national scale, and when friends needed her for strength or help, she would “always find it within herself to go the extra mile” for others.
“There’s just not enough good things to say about her and not enough to say about what an immeasurable loss this is for our community,” Escher said.
Escher and Fessel both attended a virtual birthday celebration on Zoom for Almaliti’s 43rd birthday on Sept. 21, and said they’re still in shock over Almaliti’s death.
“It’s so tragic. She had so much more to give, not just to her family and not just to her friends, but to the autism community here in the Bay Area and nationally. She was a nationally known advocate. A superstar,” Escher said.
“She wanted to make the autism world a happier place. The autism world is a very, very difficult place,” Escher said. “But she did, she made it a happier place.”
