#AuthenticAwareness includes attention to this life-threatening condition, which is common in cases of severe autism
By Kelly Olson
My daughter Kayla is about the same age as Greta Thunberg, but the poised and articulate climate activist’s “autism” bears no resemblance to my daughter’s.
In a split second, Kayla will swallow whole objects intact, like you might see someone do in the circus. A big rock, batteries, chunks of soap, nails, an Allen wrench, baby lizards or bugs, she’ll pick them up and eat them. She used to break glass on purpose so she could eat and swallow the shards. To this day most of our dishes we use daily are made of unbreakable plastic or melamine.
From an X-ray finding batteries inside Kayla’s abdomen.
Pica, as this behavior is called, is a common feature in autism. It refers to the ingesting of non-edible objects like dirt, rocks, glass, paper clips, paper, plastic, and/or basically anything else you can imagine. Items may be relatively benign such as grass, leaves, paper, or more harmful such as rocks, household cleaners, etc.
For many, pica can be a horrifically serious compulsion, leading to choking, poisoning, or blockage or perforation along the gastrointestinal tract. Emergency Room visits, X-rays, CT scans, blood draws, frantic calls to Poison Control, and surgeries for repair or object removal are all part of life for families like mine.
In one particularly tough year, My daughter had so many X-rays and CT scans done in search of swallowed foreign objects, I was surprised she didn’t glow in the dark and seriously worried about the long-term effects of her being exposed to so much radiation at a young age. In addition, I have learned so much from calling poison control, like exactly how many tubes of toothpaste, deodorant, etc. one can eat before it becomes truly dangerous.
For years, I have lived in a state of intense hyper-vigilance while we’re out and at home. Except for sleeping — which is something she very often doesn’t do — there is no downtime, no respite from pica. Several times a night I am awoken by the door sensor alarm that lets me know she has left her bedroom. It only takes a moment for her to grab something and swallow it. At school she has a 1:1 aide who is always an arm-length away. But the vigilance continues to the other end, too. You don’t want to know how much time I have spent fishing items out of her poop to make sure they’ve passed.
To add an extra scary twist to Kayla’s pica behavior, Kayla has a compulsion to swallow large items whole. She will even pretend to chew her food just to swallow it in large chunks on purpose, as if she seeks some unmet sensory need. Even when eating appropriate food items we have to watch her very closely and make sure her food is cut up in small bite-size pieces and prompt her repeatedly to chew her food during each and every bite with each and every single meal. It is tedious, but necessary.
Unfortunately Kayla seeks out this sensation when engaging in pica. I have witnessed her pick up a large rock that you would think impossible for any human to swallow get tossed in her mouth and disappear as easily as an m&m in an instant. This behavior has always been an issue since she was a toddler. It’s as if she never moved from the toddler stage where they put everything in their mouths, and it just got worse and worse each year.
Images from the endoscopic removal of the pens.
Kayla’s pica was at its worst when she was about eight and nine. Because Kayla likes drawing and I could not let her use crayons or markers (she eats crayons and marker tips) I thought I would get her some colorful gel ink pens. I found a pack of five at a dollar store. There were smaller pens, maybe about four or five inches each, but pens nonetheless. I sat on the chair adjacent to the sofa and placed some paper and the pens on the coffee table in front of her while I checked some emails on my laptop. I must have looked down at my computer for 20 seconds and by the time I looked back up, the pens, all five of them, were gone.
I asked Kayla, “Where are the pens?” and she indicated to me that she had swallowed them. “There’s no way, that’s not possible,” I thought to myself as I frantically searched under the sofa and flipped over all the cushions. No pens. So I just calmly got her dressed and took her to the emergency room where an X-ray revealed the metallic tips of five ball point pens. We were then transported to Methodist Children's Hospital by ambulance where she had endoscopic surgery to remove them from her stomach.
Fortunately the surgeon was able to retrieve the tips of the pens with the tool and did not actually have to cut into her abdomen. After the surgery the doctor showed me the image of the pens in her stomach, my jaw dropped. I guess I was still somewhat in disbelief. But seeing is believing. That's why I make a point to show new teachers, camp counselors and other care providers of hers, images of these pens. Because I think when I say “pica” people think maybe she chews on a piece of paper now and then or eats dirt or grass or leave — not things that require emergency room visits. I need them to wrap their heads around the danger my daughter faces each day. This is life-threatening behavior.
“Kayla is like Houdini, able to get her way into anything, so as you can imagine, everything is locked up at our house. We have locks and or alarms on doors, cabinets and the refrigerator.”
I sought help everywhere, but no one in Texas was willing or able treat her. So about six years ago I admitted her to the Neurobehavioral Unit at Kennedy Krieger in Baltimore for several months. As a single mom, I was desperate and exhausted and totally out of options. A combination of behavioral treatments and medications has helped reduce the pica, but I remain in a state of constant vigilance, and a weariness compounded by Kayla’s hyper-energetic inability to sleep. Kayla made excellent progress during and after her inpatient stay in Baltimore. Her pica behavior decreased dramatically. However we are not 100% out of the woods. It is an ongoing work in progress but I hope as she matures and we continue our best efforts to provide the appropriate behavioral support we can eventually eliminate this behavior.
Despite her progress, we still have to take precautions to keep her safe. Kayla is like Houdini, able to get her way into anything, so as you can imagine, everything is locked up at our house. We have locks and or alarms on doors, cabinets and the refrigerator. I’ve had alarms, home camera systems. In the bathroom I couldn’t leave anything out, even toilet paper, shampoo, soap, or deodorant, because she would ingest them.
The situation has since improved somewhat, I can now leave certain things out I know she has no taste for, but basically the bathroom is literally empty except for towels and toilet paper. I even have to cut out the magnets from the shower curtains liners as she will remove them and swallow them. She even figured out how to pick locks on my bedroom door in order to seek out all the aforementioned toiletries I have stored.
You cannot sweep from your mind the thought that this is how my kid is going to die — she’ll choke or get poisoned. There is no replacement behavior, she seeks the sensation of a whole object going down her esophagus.
“While the world celebrates the Gretas of the world, it turns its eyes away from the Kaylas. But there is a generation of young people like my daughter who desperately need help and need the world to know their stories, too.”
After I remarried last June, we moved into our new house and the enormous added costs of living with severe autism once again hit me. To cite just one of many examples, we had to pay $1,000 to have an highly toxic oleander tree removed from the backyard for fear Kayla would ingest its potentially deadly flowers. Also, the renewed sense of missing ordinary, normal things, like wondering if I’d ever be able to buy a regular wine glass.
But mostly I know this autism behavior, like her eloping, could kill her. While the world celebrates the Gretas of the world, it turns its eyes away from the Kaylas. But there is a generation of young people like my daughter who desperately need help and need the world to know their stories, too.
I will never give up on my daughter, and will try every tool I can to keep her from swallowing things that aren’t food, but I am also consumed by fear. I’m not going to be around forever, and no one else will be her helicopter mom. Our vulnerable, disabled autistic kids, they deserve the cover of Time magazine, too.
Kelly Olson is the pseudonym of an autism mom who lives in Texas. Kayla is a pseudonym for her daughter.