By Kim Stagliano
Traditional and social media are abuzz with a story of a Pennsylvania man with autism who has been denied a heart transplant at The Hospital of the University of Pennsylvania over his "psychiatric condition" and "autism." His mother, Karen Corby, is rightfully outraged that her son's life has been judged and fallen short of the "criteria" for life.
In thinking about the story, it occured to me that while denial of a heart transplant is cut and dried no bones about it refusal to give medical care to a sick American - it's only the ugly publicized tip of a dirty and monstrous iceberg under the surface of healthcare for people with autism. I've seen denial of healthcare to my own three daughters because of their diagnosis many times. Here are the times I can rattle off the top of my head (it's the last week of summer and I'm running on six brain cells and an overdose of Starbucks Darker than Peat Moss brew.)
1) Pediatric hearing test. Nurse asked me if daughter would answer yes or no to the sound. I said "No, she will not." "Then we can't test her." And that was that - no hearing test, which is a standard well visit procedure.
2) Vision test. See above.
3) GI tract testing. Child stopped having regular bowel movements after age 12 months and the introduction of whole milk and Cheerios. Pediatric response? Miralax.
4) Grand mal seizures. LA neurologist friend strongly suggested a spinal tap to rule out causes. Children's hospital doctor appalled that I asked - "Why would you want to put your daughter through that?"
5) Clumsy gait, knocking knees, hips splaying while trying to walk up stairs. (And not walking until 23 months.) Requested eval for cerebral palsy and questioned birth process problems. "It's autism."
How about head banging? Headaches. Posturing the body over a sofa arm? Gut pain. Incessant infant crying? Brain swelling. The list goes on and on - denial of medical care because of the autism diagnosis.
How many readers can bring their children to the dentist for a cavity filling without the need for an insurance review for anesthesia? Thanks to a healthy diet and diligent brushing (with non-fluoride toothpaste I might add says the orthodontist's daughter) we've only faced one cavity. We had to spend the morning at a local surgery center and then deal with the recovery process afterward. For a filling.
How do you think gyn care will go for my daughters? How many men with autism will never have an EKG, let alone a heart transplant.
I'm sure your children or maybe even you if you're an adult on the spectrum have been denied proper medical care because of the autism diagnosis. I expect this to worsen in the coming years as teens become adults and then young adults become middle aged and elderly - without their parents near them to fight on their behalf.
As we keep track of death by wandering, drowning, at the hands of a parent or caregiver in autism, I say, "autism kills from the outside in." But it seems that in the future it may indeed kill from the inside out, as our loved ones are turned away from care.
Kim Stagliano is Managing Editor of Age of Autism. Her novel, House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.