The daily tumult of autism can discombobulate a home and drain a bank account—hidden costs that experts don't even factor in when discussing the economic impact of autism. This family admits it starts shedding cash before dawn.
By Jill Escher
Where did all my kitchen rugs go? It’s 3.20 in the morning and as usual, I’m awake. Not by choice but because, like clockwork, my sweet, nonverbal 18 year-old son with autism woke at 3 and started running, some might say rampaging, around the house. Boom, clomp clomp, tap tap tap, whoosh door opens, slam door closes, ugh.
I pat around my nightstand, reluctantly find my glasses, and head downstairs, not knowing what mischief may have transpired over the past 20 minutes. These wee-hour melees can be a bit like a suspense scene in a not-very-scary horror movie. Open the door… what will we see… probably not a severed head… but….
And there it is. My kitchen rugs are gone.
Jonny’s sitting at the kitchen table with a big grin and four iPhone 3GS’s splayed out before him. Shredded parmesan, once neatly bagged in the still-open fridge, is strewn over the table and floor, as if some yellow snow had fallen from the light fixture. With a well chewed pink toothbrush he taps at his iPhones, all synced to that 1979 tune, My Sharona.
Well, I'm happy he's so happy, but... my half-awake head buzzes, “Where are my rugs rugs, rugs rugs rugs, where did they go go, go go go? My Sharona.”
Over our north neighbor’s fence? Over the east one, aka the Corner of No Return? In the hot tub? It’s now 3.25 a.m. and I’m not exactly in the mood to treasure hunt floor coverings. And I can't help but wonder, Oh great god of missing rugs and whatnot, what reverse jackpots will the chaos of autism bring today?
"What reverse jackpots will the lottery of autism bring today?"
Behold our 19th new sheet set of the year. Depending on the mood, strength, and obsession du jour of the individual, the daily collateral damage of autism can be staggering. What amazes me is that these types of bills don't even show up when the experts talk about the costs of autism. (See, for example this 2015 study out of UC Davis, which did include lost productivity in addition to care and medical costs.) But we really need to talk about them because they can hugely impact families' quality of life and financial well being.
Just to illustrate how high this officially invisible toll of autism can be, a recent day at our home went like this. About $90 for a new sheet set to replace the otherwise perfect set he shredded (the 19th replacement of the year). A $120 iPad and iPhone repair bill. I do not exaggerate when I say that some weeks we’re a patient of Phone Doctor of San Jose every single day. Then add $240 for the housekeeper because I hardly have time for the Sisyphean task of cleaning up after my main man. In the late afternoon, add $225 for the handyman to replace the cracked casing of a door that had the misfortune to come between Jonny and his cherished iPhones. Finally, just as I looked forward to using them at the ice rink with my autistic daughter that evening, I found my new iPhone 7 earbuds torn into pieces, and poof! goes $29. In all, our daily autism bill can easily top $500.
Just to illustrate how high this officially invisible toll of autism can be, a recent day at our home went like this. About $90 for a new sheet set to replace the otherwise perfect set he shredded (the 19th replacement of the year). A $120 iPad and iPhone repair bill. I do not exaggerate when I say that some weeks we’re a patient of Phone Doctor of San Jose every single day. Then add $240 for the housekeeper because I hardly have time for the Sisyphean task of cleaning up after my main man. In the late afternoon, add $225 for the handyman to replace the cracked casing of a door that had the misfortune to come between Jonny and his cherished iPhones. Finally, just as I looked forward to using them at the ice rink with my autistic daughter that evening, I found my new iPhone 7 earbuds torn into pieces, and poof! goes $29. In all, our daily autism bill can easily top $500.
Nooooooo... Not. My. Piano.... Mattresses shredded. Upholstery ripped. Drywall bitten. Paint peeled. iPads shattered and iPhones dunked. Keys snapped off our piano and MacBooks. Window screens pushed out from their moorings. Down pillows punctured, with the nightmare of tiny feathers settling in all corners. Rugs denuded of their pile. Jackets ripped, shoes chewed, sweatpants with holes the size of grapefruit. Shutter slats chewed, askew and broken, giving our home a whiff of Haunted Mansion. The corner of my car’s front seat gouged into a mini crater of foam.
To be abundantly clear, I don't blame my beloved son one bit. Not a speck of this Tasmanian Devilishness is his fault. You will not find a kinder, gentler, sweeter, more pure and affectionate soul on this planet. He deserves the Nobel Peace Prize just for being him. But, as with many others with autism, he was born with such scrambled or short-circuited brain wiring that he lives in a world of constant cognitive and sensory chaos. Literally a million dollars spent on therapies, and tens of thousands of mom and dad hours working on his skills, have barely made a dent. Through no fault of his own he is simply not endowed with meaningful neural pathways through which to learn by the usual routes of association or experience, or to organize and control himself. Blaming him for chewing on my piano would be like blaming someone with epilepsy for his seizures.
But understandable though it may be, no one can ignore a bill for material casualties easily exceeding $25,000 a year. If we counted all the child care, social services, schooling, therapeutics, and specialized camps and recreation, we’re talking an annual Autism Bill of many multiples of that. And that doesn't even encompass our Double Bill, as we have another child with nonverbal autism as well.
To be abundantly clear, I don't blame my beloved son one bit. Not a speck of this Tasmanian Devilishness is his fault. You will not find a kinder, gentler, sweeter, more pure and affectionate soul on this planet. He deserves the Nobel Peace Prize just for being him. But, as with many others with autism, he was born with such scrambled or short-circuited brain wiring that he lives in a world of constant cognitive and sensory chaos. Literally a million dollars spent on therapies, and tens of thousands of mom and dad hours working on his skills, have barely made a dent. Through no fault of his own he is simply not endowed with meaningful neural pathways through which to learn by the usual routes of association or experience, or to organize and control himself. Blaming him for chewing on my piano would be like blaming someone with epilepsy for his seizures.
But understandable though it may be, no one can ignore a bill for material casualties easily exceeding $25,000 a year. If we counted all the child care, social services, schooling, therapeutics, and specialized camps and recreation, we’re talking an annual Autism Bill of many multiples of that. And that doesn't even encompass our Double Bill, as we have another child with nonverbal autism as well.
The Good Doctor makes good money. Real-life autism families, however, are often in financial crisis. For many families, massive expenses like these are just the start of their reverse lottery. Often parents must sacrifice a job, and the entire income stream that come with it, to care for children or adult children. They become unable to save for their own retirements as every excess penny from this dried up cash flow gets diverted to the never-ending Bill. And the new federal tax cuts? I worry that lower social services budgets could hammer these ultra-fragile families even more. The financial damage of autism can be devastating, even a one-way ticket to poverty. And now the situation seems poised to get worse.
"For many families, the financial damage of autism can be devastating, even a one-way ticket to poverty. And the situation seems poised to get worse."
"For many families, the financial damage of autism can be devastating, even a one-way ticket to poverty. And the situation seems poised to get worse."
Found! I know, groan, these are not fun topics. Wouldn't you rather just binge watch "The Good Doctor", which features a supposedly autistic genius protagonist? Perhaps instead of indulging in sugar-coated fantasies this holiday season turn your attention to the hundreds of thousands of families in our country living with harsh and often bank-draining realities of severe autism.
As I edit this blog I get a text from a friend. Her large autistic son just broke her bed, after recently breaking his own, which they had reinforced multiple times with heavy lumber and bolts, to no avail. Two beds dead. Two mattresses with mushed springs. Her Autism Bill of the day started with a whopper of about $2,000. Not to mention all the family's lost sleep and time she must devote to restoring habitability to her home.
Just before dawn, I spy my rugs over the north fence, alongside a pile of missing sheets and towels. Phew, no shopping today, just a retrieval mission. But then my gorgeous Jonny, skipping with his abundant energy and joy, darts into the front yard and yanks the rear windshield wiper off my car, breaking the arm. Ka-ching! And it’s only 6 a.m.
As I edit this blog I get a text from a friend. Her large autistic son just broke her bed, after recently breaking his own, which they had reinforced multiple times with heavy lumber and bolts, to no avail. Two beds dead. Two mattresses with mushed springs. Her Autism Bill of the day started with a whopper of about $2,000. Not to mention all the family's lost sleep and time she must devote to restoring habitability to her home.
Just before dawn, I spy my rugs over the north fence, alongside a pile of missing sheets and towels. Phew, no shopping today, just a retrieval mission. But then my gorgeous Jonny, skipping with his abundant energy and joy, darts into the front yard and yanks the rear windshield wiper off my car, breaking the arm. Ka-ching! And it’s only 6 a.m.
Jill Escher is president of Autism Society San Francisco Bay Area, founder of the Escher Fund for Autism, and a housing provider to adults with autism and developmental disabilities. She is also a former lawyer and the mother of two children with nonverbal forms of autism. She can often be found hiking with her son, ice skating with her daughter, and fixing things.
Disclaimer: The opinions and assertions stated in the SFASA blog are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.
Disclaimer: The opinions and assertions stated in the SFASA blog are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.
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