Journeys with Autism

I had a very frustrating experience at the doctor’s office on Wednesday. It taught me a lot about my Asperger’s challenges, my limits, and the necessity of getting the right support.

But first, I need to vent.

Since moving up to Vermont, I’ve been seeing a new doctor. I went to her office on Wednesday because I had requested a referral to my OT, and the doctor wanted to check in each month about my OT visits. We also needed to do some “housekeeping” tasks, like figuring out when I had my last physical.

When I saw her last month, my chart did not have any information in it from my last doctor. I’d requested that the records be transferred about five months before, and it was surprising that they weren’t there. I later got a very apologetic message from the office manager, saying that the records had arrived long ago, but had not been placed into the folder with my new patient information.

Unfortunately, that mistake was a harbinger of things to come.

On Wednesday, I had a 3:00 PM appointment. I showed up about 10 minutes early to check in and give the receptionist my co-pay. I then sat in the waiting room, which was slowly filling with people, until 3:20, 3:30, 3:40…You see where this is going. At some point, a woman with two small children came in. The older boy was coughing constantly, and the younger one (who undoubtedly was carrying his older brother’s germs) was crawling around putting everything in his mouth that wasn’t tacked down, and touching every object he could find, including the walker of an elderly woman who was there to see the doctor. The mother of the two boys sat with a magazine held up to her face (literally) and paid very little attention to the children.

By about 3:45, I was long since overwhelmed and had begun to realize it. So, I went up to the receptionist and asked whether there was a quiet place in which I could wait. Luckily, a room had just opened up, so the nurse brought me in there and took my blood pressure, my pulse, and my temperature. When she was done, she said that the doctor would be there “in a few minutes.” I began to enjoy the solitude until I realized that it would be more than a few minutes, at which I point, I started to silently cry with frustration and anger. At 4:10, the doctor walked in, and without offering an apology or an explanation for the long wait, said: “So, you’re here for an osteopathy appointment?”

I just about spit. It was everything I could do to keep from rolling my eyes and snarling. Instead, I used my best humorless monotone voice to say, “No, I’m here because I’m seeing an OT and you said I needed to come in once a month.”

“Oh,” she said. “That’s right.” (Did I mention that she had the seven-page OT evaluation I’d brought in a month before?)

Then, we spent about ten minutes talking about health insurance, during which time she told me that I needed to call the insurance company and find out whether the referral had been approved. She suggested that I carve out about 45 minutes and put my phone on speaker while I got the run-around. Again, in my most humorless voice, I said, “No, I absolutely cannot do that.” She finally said she’d get someone from the office to call the insurance company.

Terrific. So, about scheduling that physical, I said. I couldn’t remember exactly when I’d had my physical last year, so I asked her to look it up on my chart. She said, “Well, I see you had a physical in 2007.”

“Okay,” I said slowly, “in what month did I have my physical in 2008?”

She said she’d have to figure that out. So then, and I am not kidding you, she began to remove the pages from my chart and spread them out onto the examination table. She still couldn’t find the pages from 2008, so she said, “I’ve got to go and get someone on the case about this.” She left the room. I know, I should have grabbed onto her ankles and kept her from leaving, but I figured she would be back in a minute or two. Why I made that assumption, given how swimmingly everything was going, I don’t know. Anyway, the minutes ticked by. First, I started crying again, and then I walked out into the corridor, just to make sure everyone hadn’t gone home. I couldn’t decide whether to just walk out of the office altogether. I probably should have.

Finally, after ten minutes, she came back and told me that I’d had my last physical in June of 2008. Halle-freakin’-luyah.

Then, she gave me some new prescriptions for my medications. Did she ask me anything about my visit to the OT? Anything at all? Nope. And that was the reason for the whole visit. I could have gotten my prescriptions called in and found out the date of my last physical over the phone.

I drove home crying in utter frustration.

So what have I learned about my Asperger’s from this little disaster?

1. As the saga in the doctor’s office wore on, I could see a meltdown on the horizon, and I steered myself away from it. Nothing would have been gained by it, and I wasn’t about to lose my dignity in front of everyone. However, steering clear of the meltdown was so exhausting that it left me without a clear sense of how to express my frustration and my needs in a constructive way. Instead, it took a huge effort just to ask the simplest questions, and by the time we were done, I could hardly put a sentence together.

2. I don’t do well when my expectations are thwarted. I generally expect some wait at a doctor’s office, but I had not imagined a 70-minute wait for what should have been a 15-minute appointment. That was more out-of-whackedness than I was prepared for.

3. I don’t do well when people are very late after I’ve done everything I can to show up on time. I’ve gotten more flexible about some lateness, but over an hour is really over the top.

4. I don’t do well when people don’t apologize. A simple, “So sorry about the long wait, but we’ve had a series of mishaps today” would have sufficed. But then again, I’m an Aspie and don’t understand social graces. I guess I’ll have to work a little harder on that.

5. I can’t sit in a crowded waiting room for very long.

After telling the story to my husband, he said, “Look, you’re dealing with a disability here, and they need to make accommodations for you. Otherwise, you can’t go to that doctor’s office again. If you had a mobility problem, they’d make allowances, so what’s the difference?” (A smart man, my husband.)

So we’re going to write a letter to the doctor’s office, making it clear that my AS and SPD make certain things very difficult. We want to be able to call before coming in, so that if they’re running late, we can wait at home, rather than in a crowded waiting room. If they can’t accommodate us, we’ll find someone who can.

I realize that what I need most in these situations is an advocate, rather in the same way that an Aspie kid in school needs an aide. So my husband will go with me to future appointments. He won’t be overwhelmed, and he’ll have enough clarity of thought to express what I can’t express while I’m just trying to process what’s going on.

My next appointment isn’t until June, so we have some time to continue thinking it over. I’m not going to accept that what happened is so common that I should let it go. I know it happens a lot, but that doesn’t mean I shouldn’t protest it and advocate for what I need. Nothing will change otherwise. Nothing ever changes without people making themselves heard.

© 2009 by Rachel Cohen-Rottenberg