More Autism Awareness
For many folks on the autism spectrum, medical encounters are fraught with anxiety and fear. Sensory issues, limited ability to understand procedures and express themselves, the speed at which things are expected to proceed, traumatic memories of previous encounters—all can combine to create some serious daytime nightmares.
Bink and I have decades of experiences across settings from her familiar pediatrician’s office to hospital emergency rooms to outpatient surgeries to labs for blood draws. Even a TB test done at a local pharmacy, a procedure that some would call benign, has evoked what I can only describe as pure terror. There were many times when my precious daughter had to be held down by three or four adults to perform something as simple as a tick removal—this even after a sedative. I used to carry a bowl in a large plastic bag to every appointment, for her inevitable fear-induced vomiting. Recently, her new and excellent primary care doc was able to look in her ears–first time in almost 15 years.
My girl and I have worked creatively over the years to mitigate as many of the fear factors as possible. She’s also grown—a lot—and learned to cope with situations that would have sent her spiraling when she was younger. As the percentage of children diagnosed with autism has risen, the medical profession has changed as well. Most medical offices have gone through training to better serve their patients with autism. Awareness and understanding have increased exponentially. I’ve grown to expect that, perhaps too much.
Last week I took Bink to the dentist. I’ve poemed about this HERE. We still see her pediatric dentist. I’ll call him Dr. Wonderful as he has been just that—kind, patient, respectful and understanding—for many, many years. Bink has done so well, incrementally allowing longer and slightly more thorough exams. A trip to “The Tooth Doctor” is no longer a source of extreme anxiety and fear.
The night before the latest appointment I received a call from the office.
Receptionist: I know Bink always sees Dr. Wonderful, but he’s not seeing patients much anymore. We have Dr. Fabulous available instead. Is that OK?
STRIKE ONE!
Me: Ummm, please hold a moment, let me talk with her.
I conferred with her, told her about Dr. Fabulous, and she agreed to give it a go. Whew! I confirmed that we’d be there.
Me to Bink: That’s a very adult thing to do. Good being flexible.
The next day it was raining. That’s an understatement. Sleety, nasty rain pelted us all day long, continuing from the night before. Driving was miserable, and we were wet and bedraggled when we got into the dental office.
STRIKE TWO!
When we were escorted down the hall, we met a new, young dental hygienist. She wore a friendly expression but spoke so quickly we couldn’t catch her name. Bink sat in the chair, and before I had a chance to ask the hygienist to repeat her name for us, she looked at Bink’s records on a screen, turned to me, and said “Autism, Obsessive Compulsive Disorder, Anx——”
STRIKE TWO AND HALF!
I shut her down before she could continue on with a few more diagnoses spoken aloud as if Bink was not there. Told her to just show me the screen and I could let her know if anything had changed. I was stunned. This office has a small but constant percentage of patients with special needs. The young woman seemed taken aback, then mumbled an apology. As she began to adjust the chair and reach for the implements of her profession, she once again addressed me.
“We’re going to raise up the chair and put sunglasses on her, is that OK?” I turned to Bink, the consumer of these services, and asked her if this was OK with her. Hint taken at last! Or so it seemed.
We continued through the exam, Bink advocating for herself as best she could, me asking for clarification and filling in a bit more as necessary. OK to put the mirror in the mouth, but not at the same time as the “tooth counter”. No scaling. No suction—please use gauze to remove excess fluid instead.
After the exam, the hygienist mentioned that it was time for X-rays. Do we want that today? Bink and I communicated about this and the decision was made to give it a try. We had success once with these, perhaps today would make it twice.
We changed rooms. She tolerated two X-rays on each side! She was uncomfortable, unhappy, but she dealt with it. She was proud, as was I.
Back to the exam room to wait for Dr. Fabulous to come in and have a look in Bink’s mouth. When she arrived after just a few minutes, I was relieved. Maybe we could get out of there soon! I was also already formulating my polite but firm comments for the education of the young hygienist and the edification of the office manager.
Dr. F greeted and treated Bink as one would expect. She communicated clearly, respected boundaries. Did what she could. When the doc looked at the X-rays, though, she pointed out one that was incomplete. Said she’d really like to get a look at the root of that particular tooth, showing me and Bink which she was referring to, with the possible shadow that might indicate an area of concern. Could we redo one X-ray please?
Sigh. Inward groan. Me to Bink:
What do you think? Can we try just one more so Dr. Fabulous can make sure your teeth are healthy?
Bink, after a good minute or so:
OK.
Off we went, back to the X-ray room. Into the chair, X-ray inserted into mouth. The hygienist pushed it down deep into Bink’s gumline.
B: Aaagh!!!
H: Just more try.
Again, pushing it down., Again, Bink calling out and jerking her head away. This went on for several more times. Finally, Bink reverted to her emphatic “ALL DONE”! The hygienist looked at me. We almost got it, she said.
Bink, said I, can we try just one more time to see if we can get this X-ray?
Bink: No response, but she stayed in the chair and opened her mouth. So the hygienist tried again. No go.
Before either Bink or I could protest, she pushed it in again. And again. And again. Bink was beyond distressed.
“It’s time to stop” I said. “We’ll try another time.”
“Are you sure?” H said. As she pushed the thing into Bink’s mouth AGAIN!
STRIKE THREE!
“Stop”, I said more firmly. “We need to be all done now.”
The hygienist looked at me pleadingly. She seemed almost desperate to this X-ray done, to get it right.
“Please tell Dr. F that we will try again at some point. We are finished now”. Was it my imagination, or did the young woman look at me as if I was the one out of line?
We made our shaky way out to the desk, where I fished out my credit card while Bink beat it to the bathroom. I said my brief piece to the office manager, who thanked me.
“My mouth got boo-booed” Bink said later. “Yeah, that happens to me, too, sometimes. The hygienist should not have kept going, but it’s over now.” I tried to make light of it so she wouldn’t continue to obsess about this for months and years.
Later that day I noticed a bloody spot on Bink’s lower lip. She said the inside “got boo-booed” too, but she wouldn’t let me look. Her much-anticipated Indian food lunch went down easily, so I figured it couldn’t be bad.
I’m writing this four days later. She still has a sore spot on her lower lip. It’s healing. May her latest medical trauma heal, too.
–Melinda Coppola