Monday, July 25, 2011

Exposure Anxiety, Part Two

I have written earlier about the tendency of people with autism to make use of various repetitive behaviors in ways that at times may drive those around them to great frustration. (See the posting from Feb. 18, 2010).

Many of the young people I have known over the years have some limited use of oral language, and most of those who can speak exhibit what is known as echolalia when they do talk. This tends to be words or phrases they have heard in the home or school setting, and they may repeat them over and over again, seemingly in random, meaningless fashion. But more than once I have had a student repeat a phrase such as "Bad boy!" - a reminder to all of us that how we talk to children DOES make a lasting impression.

Beloved books, TV shows or movies may lead to what is often called "TV talk" and many of these youngsters develop quite a repertoire of familiar phrases that provide comfort in difficult times - or may, if we are really listening, serve a communicative purpose.

I recently traveled to Canada for a long weekend of working on typing with several families there. One young man was heard in the hallway before our first session repeating over and over again, "I don't want to come out of the egg!" We definitely struggled during our time together as his loving family asked questions, trying to learn more about his personal preferences and inner thoughts. In particular they wanted to know what might be causing him to bite his own hand repeatedly. We asked about a possible toothache, or jaw pain, or stomach distress - and were getting nowhere, until he held my hand and typed: PLEASE ASK ABOUT PAIN IN MY HEART. And with that major crack in his resistance, he came out of the egg long enough to tell his family he loves them, is frustrated by his inability to talk, and wishes everyone would see his true intelligence.

I also spent many hours at the home of a young gal who experiences so much anxiety that she rarely leaves her home. We typed in short sessions, when things were comfortable enough for her to allow me into her personal space. In fact, just about everything her family does is carefully choreographed according to her comfort level, 24 hours a day, day in and day out. It's a matter of survival - and many families of those on the autism spectrum share this style of doing whatever it takes to maintain some semblance of stability in their homes.

When it came time for me to leave, this young lady covered her head with a blanket and shooed me away with an extended hand. What I heard her say was, "Bye-bye, little bird. It's time for you to fly. There's no room for you in the nest. Bye-bye." I took the not-so-subtle hint and left with tears in my eyes. Yes, it was time for me to fly back home, and this was her way of letting me go. But, as I thought about it some more on my flight home, I think there was even more of a message in her spoken words. She knows I live far away and may not visit again for several years. She knows it's now up to her and her family to keep the communication going. It is time for her to leave the comfort of my support, time to fly on her own. And I think she might be ready!

I didn't recognize either of these phrases - coming out of the egg, or leaving the nest, and I didn't ask the families for an explanation - didn't want to break into the interactions I was having at the time with these amazing kids of theirs! But I am guessing the families have heard these words before, and could tell us just what book or movie or TV show they come from. Maybe these are common, repetitive phrases they've heard over and over again for many years. Maybe the words have never seemed to have much meaning in the way they were used.

I don't think I am overreaching to think they carried a lot of meaning in what these FC users wanted me to know.

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