Recently I was horrified to see on my Facebook feed a story about a mom, who was an extraordinary autism advocate, and her severely affected autistic son, dying tragically together in a fire in the wee hours of the morning.

Her name was Feda Almaliti. Her son’s name was Muhammed.

From everything I’ve read Feda was a warm, wonderful human being who was a force of nature, a devoted mom to her fifteen-year-old autistic son and a staunch autism advocate. I can’t pretend to know what went through her mind her last minutes on earth. I know that she made it outside, and chose to run back in to try to save her son. She must have known she might not be able to get him to leave. Muhammed was a teenager, not a small child she could easily lift and carry out. She had to have known this might be the end of everything when she ran back into that raging inferno.

But she went back anyway, and I get it. Because nothing would prevent me from barging into either of my son’s rooms and trying to save their lives.

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. The self-injurious behavior, the lack of sleeping, the sometimes aggressive episodes aren’t as pretty a story as the savant on the piano or kids like my other son, who has made incredible progress and is now mainstreamed and has friends and a happy life. These truths, for some, are uncomfortable.

Yet they must be heard.

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.

For more on my family visit my blog at autismmommytherapist.wordpress.com

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