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.

Sunday, July 10, 2011

Exposure Anxiety

I see it all the time - in so many different ways with so many different individuals. It can be totally paralyzing, at worst, and a major obstacle to overcome, at best. Donna Williams has devoted an entire book to "exposure anxiety" as described here:

Exposure Anxiety: The Invisible Cage

Drawing on an 'Indirectly-Confrontational' approach, this book explores the social-emotional self protection response of Exposure Anxiety and the strategies to work with these. Exposure Anxiety is the Invisible Cage, an involuntary response that challenges the person to either side with it and identify self with their own avoidance, diversion and retaliation responses or live with the frustration and despair of being aware of self but buried alive.

In my attempts to help young people who are nonverbal find their voices and learn an effective way to communicate what is on their minds, exposure anxiety is often what stands in the way of our mutual success. It happens for a variety of reasons: maybe the individual is simply living with a huge amount of anxiety over anything that is new or different; often there is a reluctance to upset the family dynamic; or maybe there is an underlying fear that if too much is revealed of their intelligence and capabilities more will be expected of them.

It makes so much sense to me as a relative outsider in these situations. I usually come into a child's life well after the preschool years. By that time, they and their families have found a way of coping with daily life that may be far from what would be considered "typical" or "normal" (if there is such a thing when it comes to family life!) but it works for them. All kids - whether they can speak or not - find ways to make sure their basic needs and wants get met. They also find ways to make their lives generally bearable and maybe even enjoyable. For those who don't talk, it's usually their behavior that leads to desired outcomes for them - and every single family learns to accommodate, adapt and modify to keep the peace, at least to some mild/moderate level. (Educators might appreciate my use of common school terminology here to describe the home situation - it's done with tongue firmly placed in cheek. I may be retired, but the lingo is still alive and well).

Enter someone like me, bearing a letter board and all sorts of positive words about the exciting possibilities that lie ahead if one just gives communication a try. Only on a few very rare occasions have I had the sheer joy of being met with enthusiasm by a person eager to let me hold their hand and start them typing. Much more typical is a child who runs and cannot be coaxed back for at least a dozen visits, or a child who resorts to pinching, hitting, biting, hair-pulling, or screaming to let all of us know just what they think about my ideas. I think I have been through it all - and have the scars to prove it.

But the blessing is that I have also experienced the success that comes with persistence and working through even the toughest of situations. When I have found myself in a physical struggle with a small child - most likely positioned in my lap on the floor with my legs over theirs, one arm pinning down one side of their body, my chin tucked and on guard for head-butting, and my facilitator's arm placed on their preferred hand, and I ask if what we are seeing in their body language means they need a break or want to quit --- and they extend a finger to spell out, "NO I WANT TO KEEP TYPING" I know my efforts are all worthwhile.

I am convinced that revealing our inner selves is not easy for even the most outgoing and confident among us. Those who are naturally shy or more introverted may find it excruciatingly difficult to share their innermost thoughts and feelings. And sorry guys, but I do see most males of the species tending to avoid discussions that get really personal. For anyone on the autism spectrum, for anyone who struggles to communicate for whatever reason, we can reasonably expect that identifying and then sharing inner thoughts is going to present quite a challenge!

Most kids who develop along some sort of normal pathway do find it rewarding to show others what they know or what they can do. "Watch this, Mom" can be heard at every public playground or pool all day long. "Watch me, Grandma" can wear me out some days, as much as I love every single one of my grandkids. But something changes when a child is not able to keep up with their siblings or peers. Slowly, or not so slowly, they sense they are not only different but somehow inadequate and they withdraw from the competition. They shut down. They find other ways to entertain themselves, often the solitary, repetitive, even obsessive interests and activities we commonly associate with autism. (I have seen this happen to children with Down syndrome, cerebral palsy, and a wide variety of other developmental disabilities - and many are now receiving the dual diagnosis of autism, often because they exhibit similar behaviors).

Once firmly entrenched in this way of coping, it's understandable that most kids would need a whole lot of encouragement (along with patient persistence) to help them see any value in opening themselves up to possible failure, ridicule, or additional pressure to perform if they reveal in any way that they might actually be "smart!"

My best advice in these situations is to create ways that communication and interaction will lead to better things in life - small, immediate things like meals, snacks, outings, or toys they like and bigger things like changes in the home, school or community environment that will make life more agreeable to them. Over and over again, they need to hear that they are loved just as they are and that the people who care about them want what is best for them. No one is trying to "fix" them (or cure!) because they are fine just the way they are. But everyone wants them to be happy, and if we can get meaningful communication going, we can stop all the guessing and get down to the real business at hand - creating a life that makes them feel good about themselves and makes them happy.

And they need to hear that the people who mean the most to them KNOW they have a lot to say and would LOVE to know what that might be, even if it means we have to change the way we do things around here. Tell us what you want/need so we can do just that, because we really, truly want what is best for YOU!