Journeys with Autism

Hey there, cyber pals:

I appreciate all of your comments about my recent visit to the doctor. Your observations have given me so much to mull over.

Ben, you make a great point about meltdowns being partially fuelled by the anxiety of having to face the same situation again. In fact, when I was talking with my husband about the doctor’s visit, I said, “I don’t ever want to go back there again.” It’s generally my first response to getting overwhelmed. The part that really gets me moving in the direction of a meltdown is the idea of having to face the situation again alone. I have a very difficult time asking for help from another person or saying that I can’t do something on my own. The Aspie aloneness, the sense of being apart, has accustomed me to thinking in terms of going everything alone.

John, I’m also the person who shows up at the party right on time and stands by the dip, eating things I shouldn’t. Perhaps you’ve seen me there? I also relate to your resistance to asking for help around the disabling aspects of Asperger’s. Many of us older Aspies have lived in sink-or-swim mode for so long, trying so hard to do everything right, that it goes against years of conditioning to let go and say, “I have a disability and need some reasonable assistance.” I’ve spent so much of my life trying to hide it all and act “normal” that simply coming out and asking for what I need feels distinctly like turning a barge.

Stat Mama, you’re right: if the situation becomes so overwhelming that everything in me says, “Okay, I’m out of here,” I should respect my instinct to flee. I often get stymied because I look at everyone else in a situation and wonder why I can’t handle things as well as they do. On Wednesday, I looked around the waiting room and here’s what I saw: an older woman making cute conversation with the children playing on the floor; the children’s mother reading a magazine; the person next to me sitting with his eyes closed; another older woman reading a magazine; and an elderly lady smiling at the children as they sent their germs in her direction. I’m looking at all of these people, who seem to be handling the situation like adults, and I want to jump to my feet and say, “Hello? Does anyone else value their time on this planet sufficiently to be really upset at waiting for an hour, or am I the only one—as usual?!?!” It would be good to remember that the impulse to do so is my nervous system defending itself and does not reflect upon my level of maturity or otherwise excellent manners.

LizzieK8, thanks for telling me about your experience bringing an advocate to the doctor’s office. It strengthens me in my resolve to bring an ally to potentially overwhelming situations.

Erin, I really appreciate knowing that you feel as I do about the kind of rudeness and disrespect I encountered, and that it’s not just an Aspie thing. And you’re right: these things happen because people don’t say anything about them. I definitely need to put my foot down. The question I’ve been wrestling with is “How to do it?”

Being a writer, I’m very partial to putting my feelings on paper. My husband is less than enthusiastic about this idea. He is afraid that a letter might get read days, weeks, or even months before the actual appointment and then get forgotten. He makes a good point.

My husband’s idea is that he should talk with someone in the office, either in person or on the phone, about what I need. Then, on the day of the appointment, he’ll call again, remind them of what I need, and ask whether they’re running behind. If they are, he’ll let them know what time we’ll be there for the appointment.

This morning, I realized that each of us can handle the situation in our own way. We can also simplify the entire process by asserting one basic fact: I am an autistic person. People might not understand what Asperger’s Syndrome is, or what Sensory Processing Disorder is, or why sitting in a crowded waiting room is beyond the pale for me, but everyone has heard the word “autistic.” They may not correctly understand what it means to be autistic, but the word will get their attention. Once we have their attention, the rest will follow. So, I’m going to write a (hopefully) short letter to be attached to the front of my file, and my husband will begin his conversations with the office staff using the words, “My wife is autistic and needs…”

After 50 years of overload and 20 years of migraines, it’s time to assert who I am and ask for the help I need.

© 2009 by Rachel Cohen-Rottenberg