No one raised #AuthenticAwareness like Feda Almaliti
Here, we present a previously unpublished piece from 2017, lamenting the never-ending costs imposed by severe autism
Editor’s note: Feda Almaliti was the founding Vice President of National Council on Severe Autism. On September 26, 2020, she perished in a house fire while trying to save her severely autistic son Muhammed. Three years before this tragedy she drafted this blogpost for Autism Society San Francisco Bay Area (SFASA), about one of the many dramas brought on by Mu’s autism, written with her trademark combination of exasperation and wit.
We honor Feda’s memory this Autism Month by publishing this draft, which, though unfinished and unpublished, was entirely complete in telling her story. This piece had been edited by Jill Escher, who at the time served as president of SFASA.
By Feda Almaliti
My 13 year-old autistic son Muhammed’s favorite word is “eat,” and truly this guy deserves a gold medal. He’s such a champ that we need to keep the refrigerator locked up with a heavy duty bike lock, nearly all the time. Otherwise we’d have an explosion of food not only inside of him, but on the rug, on the backyard grass, and on any number of sofas, tables and chairs. Food is not only to be eaten, apparently, but also crumbled, mushed, and thrown.
And did I mention our plates, glasses and forks? All plates long ago broken or flung. The glasses, not one left intact. And please send me a detective to find the dozens of forks that have mysteriously disappeared. So now we are the House of the Paper and Plastic-ware. Even when exalted guests are invited to partake of my legendary lamb maqluba, a feast worthy of the finest polished silver, they are served on disposables.
Which brings me to why I just returned from Home Depot with bolt cutters. With a husband, three sons and a large extended family, (translation: try keeping a brood like this fed) our fridge is the center of the universe. In it you will find my fresh hummus, stews, soups, salads, and babaghanoush. You would give anything to have my fridge in your house.
But we’re locked out. We can’t eat. Yesterday I had to order $100+ worth of Chinese food to feed this ravenous family while we thought maybe the lock, which got jammed from over-use, would miraculously recover. We open and close our fridge 50 times a day, that’s a lot of locking and unlocking, wear and tear, on a combo lock, never designed to keep an autistic teen from his food. But no, it’s stuck. So add $16.99 for the bolt cutter and $15.99 for a new lock, not to mention the value of all my time dealing with this, and that’s an expensive day.
But this $150 outlay is cheap compared to other days. Let’s see, there’s the $200 worth of perfectly prepared salmon that Muhammed manipulated into pinkish blobs before it could be served. There’s the new iPad in the destruction-proof case he tossed out the window of a speeding car ($300 gone in an instant, ka-ching). There’s the hot water handles and towel bars snapped off their fittings. My iPhone has been busted so often I deserve a prize.
Autism can be shockingly expensive. Not just the therapies and schools and housing, but the everyday Tasmanian Devil-like damage for which there is no insurance or help. I’ve seen friends’ home littered with shredded mattresses, holes in the drywall you could throw a basketball though, shutters chewed, and once-lovely upholstery stained with ink, food, urine and feces. The tab for all this damage, which by the way never seems to end? Incalculable, yet it doesn’t even show up when the experts talk about the costs of autism.
Celebrate autism? What you talking ‘bout?
Which brings me to my point. It’s all the rage to call autism a “gift” or a “super-power” or an “advantage.” What the heck are these people talking about? As much as I love my affectionate and joyful son, I would do away with his autism in a second if I could. And if he could conceptualize this question, I’m sure he would too.
So I hereby officially invite all you autism-celebrators to my home for a day. Take care of Muhammed, cook for him, care for him, clean up after him, exhaust yourselves by running like a half dozen errands and missions every day to undo the damage and just maintain a veneer of normalcy, holding on by a thread. This invitation is open to every member of the Autistic Self Advocacy Network and others who insist autism is just a natural difference to be celebrated and that, with accommodations, is not really much of a disability after all.
The invitation is also open to you “experts” who write the DSM-V. Please put Temple Grandin and autism self-advocate John Robison in the same room with my son and you tell me they have the same diagnosis. How could our bible of psychiatry be so divorced from the real world?
[Note: At this point the draft ended, with Jill asking Feda to provide a final paragraph. The piece, however, was not completed.
Please learn more about Feda: On the passing of Feda Almaliti
Legendary blogposts by Feda:
• Inclusion Sucks. Or, Why My Son with Severe Autism Has Nowhere to Swim this Summer: An autism mom stuck at home with her son on a hot summer day meditates on the smallness of his world when inclusion is the only option
• Three Strikes... and He's Out? What happens when the regular world has had enough of my son's autism]
Feda Almaliti (1977-2020) was the founding Vice President of the National Council on Severe Autism. She was irreplaceable and is deeply missed throughout the autism community.