By Eve Reiland
On the first day of Autism Awareness month this year, I got eight hours of emergency room sensory hell.
It astounds me every April the amount of blue being shined in the name of ’autism awareness,’ and the kudos given to ‘sensory friendly’ spaces being promoted by autism organizations in partnership with department stores, stadiums, zoos and other venues.
These ’autism-friendly’ spaces are typically marketed to the parents of Autistic children. For non-Autistics distracted by this lip-service inclusion for Autistics, it might seem like something to celebrate. While the accommodations implemented for shopping during a store’s ’quiet hour’ — or having a ’quiet room’ for parents and their Autistic child available while attending a sensory-exploding stadium event — might be good, it doesn’t address any of the actual needs of the Autistic community.
These promoted ‘cause marketing’ campaigns haven’t created real access to the places and spaces Autistics need the most like doctor’s offices, in-patient hospital stays, and the worst-of-the-worst of all sensory experiences, emergency rooms. While parent-founded autism organizations applaud their partners, sponsors and donors for their kindness, Autistics are going without appropriate and even life-saving medical care.
Outside of some children’s hospitals, there’s never been protocols established for Autistics and our sensory needs in these environments. None. The money raised by these awareness campaigns and partnerships went to parent-founded autism organizations. These orgs put all that community cash into research, plus marketing and lobbying for legislation to implement Applied Behavioral Analysis (ABA) on the federal and state levels.
For all the years and with their massive budgets of millions, these organizations have influenced legislation, medical care and support services, and yet they’ve never established protocols for Autistics to have access to healthcare. This is a basic need, and one many of us in the Autistic community have been loudly communicating about for years. The sensory experience is so horrific, many Autistics will avoid emergency health care. Even Autistic doctors will push off needed care due to the overwhelming environment.
Typically, I avoid the emergency room at all costs. On April 1, though, I was out of options. My anemia needed to be addressed before my levels got so low my internal organs went wonky. Under the instructions of my doctor, I was to seek immediate emergency care and might be in need of a blood transfusion.
Believe me, I did not want to go. I’ve suffered kidney stones and more on the floor of my bathroom just to avoid seeking care in that hell, but this health complication wasn’t something I could survive without medical help. So my spouse, Bill, and I sat at the hospital trying to cope with extreme sensory explosions: the questions, the beeps, the flickering lights, the vibrations of the building, ongoing construction work next to the waiting room, a malfunctioning phone system (it played music on speakers very loudly whenever a hospital employee placed someone on hold), the constant moving of people and personalities, personal devices blaring, and crosstalk.
To make matters worse, I was incredibly exposed while sitting on a bed in the hospital’s hallway for all of it. Even with my noise-cancelling headphones, sunglasses and blanket (used as comfort and fidget) the exposure was too much. After a few hours, and with no escape available, I had a meltdown. I’m a 49-year-old Autistic having a meltdown in a very public space. It’s awful and I know it looks like bad drama on a reality TV show when it happens. I hate it, but wasn’t left with a choice. I had to stay and there was no quiet room available, and every beep and light flicker felt like an ice pick in my brain. There’s no amount of ’sensory exposure therapy’ or ABA that will ever address this issue appropriately or negate the very real pain of it.
The response received about the sensory overload from my nurse who said, “Oh yeah, noises hurt me too. Go ahead and keep that blanket over your head if it helps,” before walking off into a room of beeping equipment without a flinch, tic or tremor.
One day I dream of real accomadations for Autistics in healthcare. I dream of accommodations that actually help Autistics when and where we need it the most. Until all of this autism ’cause marketing’ actually helps Autistics for more than the month of April, I’ll hold my applause.