Autism Parenting Magazine was saddened to hear of the tragic deaths of autism advocate Feda Almaliti and her teenage son, Muhammed.
Feda served as Director of Outreach for the Mental Health & Autism Insurance Project and was a founding member and Vice President of the National Council on Severe Autism in the U.S.
Fifteen-year-old Muhammed was on the autism spectrum and used an augmentative and alternative communication device. He enjoyed Dora the Explorer and swimming.
Feda and Muhammed lost their lives in an accidental house fire in September 2020.
Honoring a mother and hero in the autism community
Feda worked hard to ensure Muhammed received support when he was diagnosed with autism as a toddler, after the family was denied speech, occupational, and behavioral therapies by their insurer.
Feda took her case to California’s Department of Managed Healthcare and pursued an independent medical review. This resulted in a movement for state-regulated health plans in California to cover evidence-based interventions for people with autism. California’s SB 946 passed in 2011, and it was followed by coverage for Medicaid-enrolled children.
Autism Parenting Magazine contributor and autism blogger, Kim McCafferty, has paid tribute to Feda and Muhammed.
“From everything I’ve read, Feda was a warm, wonderful human being who was a force of nature, a devoted mom to her 15-year-old autistic son and a staunch autism advocate,” says Kim.
“Feda and Muhammed’s deaths are an incomparable loss to our community. In reading interviews conducted with Feda, she repeatedly talked about how the perspective of the severely autistic community was not being recognized. In an interview with NPR, Feda stated: ‘I almost feel like nobody hears us. Nobody. 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.’”
“Like Feda, many parents are trying to voice their experiences for their children who can’t speak and are often being shamed and chastised for it. Severe autism is often not pretty or comfortable to talk about,” Kim continues. “In honor of Feda and Muhammed, our stories must continue to be heard. And my most profound hope is that we can continue this legacy of speaking our truths for both of them, and for us as well.”
