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Feda Almaliti, Advocate For Families With Autistic Children, Dies In House Fire

Sep 28, 2020
Originally published on September 28, 2020 10:49 pm
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AILSA CHANG, HOST:

Five months ago, we spoke with autism support advocate Feda Almaliti about how the pandemic has affected children with autism like her 15-year-old son, Mu.

(SOUNDBITE OF ARCHIVED NPR BROADCAST)

FEDA ALMALITI: 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.

CHANG: Almaliti fearlessly fought to make sure families like hers had a voice. She spearheaded autism insurance reform in her home state of California and advocated for comprehensive care for children with autism. Almaliti and her son Mu are in our thoughts now because early Saturday morning, they died in a house fire. When the fire started around 2 a.m. in their Fremont home, Almaliti wasn't able to guide Mu down the stairs, so she stayed with him as flames tore through the house and trapped them. Jill Escher is president of the National Council on Severe Autism. She worked alongside Almaliti, who served as the council's vice president. Jill Escher joins us now. Thank you so much for being here.

JILL ESCHER: Thank you.

CHANG: I just would love it if you could start by telling us about your friendship with Feda.

ESCHER: Oh. Well, Feda was larger than life. She was absolutely magnetic. Everybody who knew her absolutely adored her. I think she died just she lived - I mean, totally devoted and brave and fearless. She went back in, you know, into the fire, so to speak, so many times in her life. And she was so completely original. I mean, here she was, a hijab-wearing Muslim, you know, with a whole circle of close friends of all religions and races and political backgrounds. She was like a mother, I think, to the whole autism community.

CHANG: Well, one of her most remarkable accomplishments was that she helped change California law to require insurance companies to cover treatment for autism. Just talk about how significant of an accomplishment that was.

ESCHER: Feda struggled in her own home to get the services that were needed for her own autistic son. And so she worked with other parents and other advocates in California to help pass the first autism insurance reform bill. And thousands upon thousands of families were able to access treatments for their children that they didn't have access to before.

CHANG: You know, when we spoke to Feda back in May, as she was talking about how she was managing through the pandemic, she said this.

(SOUNDBITE OF ARCHIVED NPR BROADCAST)

ALMALITI: We try to find humor in this thing that's going on every single day, you know, that we're just trying to lean on each other to get through.

CHANG: Tell us, what was her sense of humor like?

ESCHER: Well, it involved so many four-letter words I'm afraid I can't share at all on public radio.

(LAUGHTER)

ESCHER: But she had an infamous potty mouth. And she was always poking fun at people, right? I mean, she would see me one day and she would just say something like, Jill, you're not looking as androgynous as usual.

(LAUGHTER)

ESCHER: But, you know, she was always, always fun, and she was self-deprecating, too. She never thought of herself as better.

CHANG: What about Mu? When you think about Mu, what do you think you'll remember most about him?

ESCHER: Oh, just so innocent and full of love. The last time I saw them together was about two weeks ago, and he just could not stop hugging and kissing her, smothering her with love. He loved her so, so much. She took him everywhere, even when others disapproved maybe of seeing this very large and very physical young man who was sort of happy dancing all the time. She just wanted to give him his absolute best life.

CHANG: Jill Escher is the president of the National Council on Severe Autism. Thank you very much for sharing your memories with us today. And we're so sorry for your loss.

ESCHER: Thank you so much. Transcript provided by NPR, Copyright NPR.