“Autism was becoming a fatal condition for me.”
Karen said that a dozen years ago when Ben and we were the subjects of an episode of the radio show, This American Life. It was about Ben moving out of the house into a residential placement. And she wasn’t speaking figuratively.
Severe autism is a living hell for the afflicted and those who love them. Karen had suffered a dozen years of severe sleep deprivation. Dangerous incidents were becoming more frequent with her ability to control a hulking, six-foot 12 year old decreasing by the day.
Last week, it became a fatal condition for Feda Almaliti. She was a larger-than-life, 43 year old powerhouse in the autism world, with a son suffering from severe autism. A true “Warrior Mom,” her accomplishments included co-founding the National Council on Severe Autism, and helping to reform California’s insurance laws to cover autism. In the world of autism, her brains, her sense of humor, and her personality were making her a living legend. And autism ended her life, and that of her beloved son, Mu (Muhammed).
The news reports all blame the fire for their deaths. No. It was severe autism that killed them.
In the middle of the night, Feda’s sister Salah was awakened by her daughter screaming that she couldn’t breathe. Their house was ablaze.
After they had gotten out, Feda realized Mu was still inside and ran back in. As Salah screamed for them, she heard her sister trying to get Mu out.
In a devastating Facebook post, Salah describes hearing “…the popping of glass and the faint noises of Mu crying, ‘No,No,No’ in response to Feda pleading with him,” using his nickname, Hammoudeh. Too big for Feda to carry, she yelled that they needed to “get out now!”
When the fire officials found their bodies, Feda was holding Mu.
Autism had become a fatal condition for them.
So the world of severe autism has lost a pillar. But as anyone who knew her will tell you, the world at large has lost one of the best people inhabiting it.
And her beloved Mu.
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More: NATIONAL COUNCIL ON SEVERE AUTISM https://www.ncsautism.org/