Friday, January 8, 2010

When you can't talk . . .

Throughout my life, I have had frequents bouts of laryngitis. My throat was definitely my weak spot as a child, and this continued well into adulthood. I often visited a doctor because the pain was so great, but it was never diagnosed as either tonsillitis or strep throat. What most typically happened was that after a few days of intense pain (mostly when attempting to swallow), I would just lose my voice. The pain was gone by then, but naturally the inability to speak drew attention to my discomfort. I always found that interesting - people hadn't been aware of the pain I was in just a day or two earlier, but once the voice was gone, I received lots of sympathy for my condition.

Interesting, too, that my chosen profession - teaching - usually requires one to be able to speak in a voice loud enough to be heard. But my specialty had become working with kids who themselves were mostly unable to speak, and so I could usually continue to work even if I was left with no voice at all. This presented yet another opportunity for me to personally learn some very valuable lessons.

First I learned that if I spoke in a quiet voice (by necessity in this case), those around me became much quieter as well. In my classroom, if I was quiet, there was a noticeable change - for the better - in the entire environment. The kids seemed to prefer quiet surroundings, even those who had a tendency to scream or make loud noises when things weren't going their way. In our quiet classroom with a whispering teacher, everyone became quieter and calmer. I tried to remember to keep my voice low and calm even when it was working just fine.

I also learned the power of the written word. So many of my kids who were on the autism spectrum were fascinated with letters and words. They loved it when I wrote what I wanted to say rather than speaking out loud. I learned to use this in one particularly challenging teaching situation where I was working with a group of very young students who needed my constant attention and direction to do even the most basic of academic tasks, while at the same time trying to keep an older, more advanced student engaged in work that was at his level. "R" could speak, and do some quite challenging school work, but was just as needy as the younger ones when it came to adult attention. I found it worked quite well for all of us to be sitting around a small table if I wrote messages back and forth to "R" while talking and interacting with the younger ones. If I hadn't been able to interact with "R" in this way, he would not only be unable to stay at his work, but he would have been constantly interrupting my work with the younger kids - and of course providing way too much in the way of distraction for them. It wasn't easy for me, since I had to be ready to read anything that "R" wrote for me to read, then write back to him almost immediately to get him started on his next task, without losing the attention of the younger kids or the focus of what that particular lesson was about. But it worked - multi-tasking at its finest!

By far the most important lesson I learned, one that still serves me well in my present day interactions with people who are unable to speak, was the utter frustration that comes with being unable to interact with other people. By definition, people with autism have problems with both communication and social interaction. Based on what I have experienced during bouts of laryngitis, I think I have some insights that might be worth sharing.

When I first started learning about autism, I defnitely made two very serious incorrect assumptions. I "swallowed" the idea that most of these individuals were also cognitively disabled to some degree, and I thought most of them spent much of their time in a world of their own - by their own choice. I certainly wasn't alone in my thinking, but I am now so firmly convinced that I was wrong, that I feel obligated to beg forgiveness from my early students and to beg the rest of you to give up both notions immediately (if they are still present in your thinking) and never, ever make that mistake again. I know it's hard for us humans to learn from the experience of others, but I implore you to believe me on this. These people are both intelligent AND social.

Consider this: I attended one of the early conferences devoted entirely to the relatively new phenomenon we have been calling Facilitated Communication. Most of those in attendance who were using the method were already adults. They had gone through their childhood years with essentially no means of communication, so the whole idea of conversing with others was new to them. Most people with autism are also dealing with a variety of sensory and/or motor issues that make "normal" living additionally challenging. Being in large crowds is just one example of a situation where problems often occur, and many families avoid travel, stores, sporting events and such largely because they have learned that these situations are extremely stressful for the person with autism - whether it be the sights, sounds, smells, or whatever that might be making things just a little too much to endure. At this conference --- in a modern, busy hotel --- in a very large room filled with round tables, I was blown away to watch as some 20 to 30 individuals sat quietly, each with their own facilitator, spelling out questions and answers in the most amazing roundtable discussion I have ever witnessed. And what did they want to talk about, now that they finally had a voice? Overwhelmingly they wanted to express their ideas, concerns, questions and dreams about friendships, dating, marriage and their future in the speaking world.

You see, not being able to talk has a way of making one appear to be uninterested in social interactions. I found that out firsthand. When I had laryngitis and could only speak in a whisper, it was definitely NOT fun to be out in a crowd. Even if my throat was not hurting, it was an effort to "speak" loud enough to be heard. If I were at a party, with many people talking at the same time, it was just about impossible to add anything to a conversation. When I did try to speak, I immediately became uncomfortable when the people around me became so unusually quiet - just to let me get my thoughts out. It simply wasn't worth it, and I preferred to be alone, at home, doing solitary things.

On one particularly memorable occasion, we were at a restaurant with friends. This time my voice was completely gone, and even whispering wasn't working. The idea of going out for breakfast had not been part of a plan; it just happened sponaneously after church, and I didn't really give much thought to the problems my temporary "disability" might cause.

We were with people we knew well - members of our church, all with kids around the same ages as ours, and all of us had been members of the same bridge group for many years. A very comfortable social situation, UNLESS you can't speak. Everyone had lots to say, and I was OK with just listening - except that every now and then I had something I thought was worth adding to the conversation. At one point, I reached into my purse for paper and a pen. Immediately there was silence as everyone at the table looked in my direction to see what I was doing, and then waited to hear what I had written. Midway through my efforts, I felt totally foolish - nothing I might have to say was worth all that! I laughed it off and gave up. That particular incident happened at least eight years ago and was memorable enough that I have never forgotten. When you can't talk, socializing isn't much fun. And even if you have an alternative means of communication, the effort it takes often doesn't seem worth it. Being "different" isn't fun and can certainly lead one to prefer being alone.

My experience at the FC roundtable discussion helped me understand why those in the deaf community often prefer to be among others who sign. It also showed me how important it is for the rest of us to respect the needs and wishes of those who use alternative means of communication. Whatever those means might be, they should be available at all times, in all settings. And what these people have to say should be treated with the untmost respect - a great deal of effort goes into putting their thoughts "out there" - what an insult it would be if what they are saying is dismissed as unworthy or invalid.

If you have followed the history of FC since its introduction some 20 years ago, you know that much of what has been said about the method is negative. Think about it, if you were the one spelling out your thoughts on a letter board or keyboard, only to have people roll their eyes or quickly dismiss what they are witnessing as a "hoax" - how long would you stay at it? Would you even try if you knew this was likely to be the outcome? What if you were dependent on a certain facilitator and that person was transferred to another position and no longer available to you - what would happen to your interest in being sociable? Think about it. I have been doing just that for many years now. Let's just move on and do what is right for these amazing people.


  1. I always enjoy your insight. Thanks for continuing to share from your experience.

  2. This is a beautifully written and important post. Sam has struggled to communicate because of his speech and hearing issues. I have so longed to have a wonderful conversation with him but I see how he struggles and at time shuts down because of the amount of effort it requires. I spend a great deal of my day encouraging any and all communication. We are now at a point that I have actually found myself wishing for a little quiet...but we'll continue to pull that communication out because he definately has so very much to say and share. Thank you for sharing this post.