Autism can be a brutal thug of a disorder. It has already sent my healthy, happy nonverbal teen to life-saving emergency surgery twice this year. She has survived, but too often autism kills its innocent victims.
Plus a note on the September 26th Project.
Yesterday at the hospital, about to head down to the OR for removal of the mysterious foreign object from her stomach. She may be nonverbal but her eyes pleaded for help.
By Jill Escher
As pollyanna advocates urge that we consider autism a fairly benign difference to be “accepted,” the easily observable reality for families across this country is quite the tragic opposite. Autism is too often a brutal thug of a disorder that derails our children’s cognition and stalks them with death.
We see this every week, in the steady march of news stories about children with autism who wander off and drown, in a pool, a river, a pond, or a lake. Death by autism is everywhere, every day. No matter how many precautions we parents take — bolts on the doors, window locks, extra fences, security cameras, homes stripped of all objects that may be ingested — autism has the upper hand and can take our precious children in an instant.
FALLEN ANGELS. A snapshot of recent autism tragedies, clockwise from top left: Harmony Kizer Thompson, 11, was found drowned in a Denver lake. NeeGee Fiefe, 4, was found in an Indiana pond. Draven Graham, 11, was found in an Ontario river. Isaak Moon, 4, died after falling from a bedroom window in Boston. Onnex Thompson-Hall, 6, was located in a pond in New York state. Dahud Jolicoeur, 5, was found in a waterway near his home in Florida.
I have tasted this terror. I spent yesterday in the hospital panic-stricken about my daughter 16 year-old Sophie, our second visit to the ER and emergency surgery this year.
Sophie is not a runner, but she suffers from another heart-stopping “restricted and repetitive behavior” — she compulsively ingests inedible objects, something that also goes by the name of pica. Despite many years of working to reduce this behavior, it continues and only takes a single hand-to-mouth instant to put her life in peril.
She underwent surgery in January after she ate a ball-shaped part of a toy, and it lodged in her small intestine, causing a complete blockage that would have killed her but for the miracles of modern imaging and surgery, which was performed laparoscopically at Stanford Hospital. Yesterday we landed at the ER again after she stopped eating and drinking, vomited, and continually placed my hand on her tummy, the same alarming clues we saw in January.
The CT scan revealed a non-metallic round-ish object, about 3cm x 2.5cm x 2cm at the base of her stomach. The radiologist said it seemed harder on the outside and softer on the inside. We were puzzled — we could not think of any object that fit that description. We and the medical staff were also happily stunned that she didn’t choke.
Fortunately this mystery object was apparently a bit too large to travel to the small intestine. This meant the extraction could possibly be performed endoscopically, that is, through the mouth and esophagus, and without more invasive surgery.
A pediatriac gastroenterologist was assigned to the case, Sophie went under general anesthesia with intubation, and the little endoscopy camera revealed…. a small lemon.
My daughter had swallowed a lemon?! Ahhhhh, we have always had a lemon tree in the backyard, but this possibility had never even occurred to us.
It was too large to be removed through the esophagus whole, but after cutting it into two pieces the doctor was able to extract it. Sophie was wheeled back to her hospital room and gradually emerged from her groggy state, and was discharged. Today she woke up with energy and even some smiles, albeit with soreness caused by the procedure and breathing tube. She ate a full breakfast and went to school. Watching her recover, I think I must have been the most relieved and grateful autism mom on the planet.
Every time I see a story of autism’s ravages, another lost child or lifeless body, following some senseless tragedy wrought by an impulse-driven brain that can’t comprehend even basic dangers, my heart stops. I would do anything to end this epidemic of death and damage.
We at NCSA want to do something to help. This month we undertake our second annual September 26th Project — the annual emergency preparedness reminder for autism families, created in memory of our beloved founding VP Feda Almaliti and her son Muhammed who perished senselessly in a house fire after Feda attempted in vain to get Mu to exit the burning house. Please stay tuned — we’ll be on social media, have special podcasts, a featured video, a webinar, and more. We are not asking for herculean efforts, we all know autism families are already plenty overwhelmed, but for small steps that help prevent these daily heartbreaking calamities.
This morning, the smiles returning to the faces…..I wish every family such a happy ending.
Jill Escher is the president of the National Council on Severe Autism. She is the mother of two children, 16 and 23, with nonverbal autism, and lives in the San Francisco Bay Area.
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