Tuesday, August 11, 2009

Meeting & Greeting

Rosie is pretty stressed when meeting strangers, and I'm a bit at a loss as to how to help her with it. Today, we took her great-grandmother to the doctor. Rose is wonderfully patient and compassionate with someone who has confusion and memory problems, and was a terrific help. However, the trip entailed a lot of meeting strangers in the doctor's office. A direct greeting would make her startle and hide behind me, making a terrible face. We would explain that she was 'shy,' but it didn't lessen the difficulty. The most distressing thing is that nurses and other medical staff tend to be fairly social beings, who pursue contact with shy people rather than let them alone. I tried to encourage Rose to say something to deflect it, such as "I'm REALLY shy," or even "I'm autistic," but she explained that under the circumstances, she couldn't say anything at all - not a word.

Later in the day, Rose brought up the idea of humans as social animals, and we were talking over the differences between instinctual behavior and reactions to stimuli in this context. I explained to Rosie that it was part of normal human behavior to be worried about others in one's group, and that nurses in particular were very motivated to make sure that everyone was "OK," and often very socially oriented. We talked about how it was distressing for very social people not to make eye contact, that it was one of the ways that they checked to see if another person was "OK." If you hide behind your hair or me and make a face, I explained, you're sending signals that you're not feeling "OK" and their reaction is going to be to continue to try to make eye contact in order to comfort you. They don't know that eye contact makes you scared.

We talked about eventually creating an 'act' where she could use her fabulous fake eye-contact technique (look between someone's eyes instead of right in them) and say "Hello" in a light tone, but it's clearly beyond what she can do right now. So what to do? Her dad suggests autism awareness jewelry that she could point to, and maybe that could help, but it might also require more verbal explanation than is possible. I know other people have used "I Have Autism" business/info cards to explain things in times of stress or emergency. But she's not old enough to constantly carry something like this.

And then, I don't know in general whether this is the right way to go - constantly bringing autism-as-a-weakness to the forefront. I want her to own both sides of autism, the strengths as well as the weaknesses, but it's hard to imagine that taking this step of public labeling and self-advocacy won't overemphasize the weaknesses. Part of self-advocacy is owning up to the weaknesses, though, and I think it might be better to teach Rosie how to do that in a matter-of-fact way. I'm just not sure that literally carrying a label around is the best way to do it... but am also not sure what else to do.