Sunday, December 28, 2014

Pain, Communication, and Frustration

Tate, age four
I have often heard that people with autism feel things differently than we do. I do not know if this is true or how it could ever be measured and tested. However, I do know that my son Tate responds to pain differently than I do. Tate is my thirteen-year-old son, and Tate has autism. Tate cries occasionally out of fear or frustration, but I do not remember the last time he cried because he was hurt. I think he was still a toddler; but by age three he no longer cried when he was in pain. I know he feels pain but he seems to be able to manage his reaction to it. He has had many ear infections over the years and I just had to guess when to take him to the doctor. I have taken him when his ears were fine and I have taken him when his ears were horribly infected. I know when Tate has a sore throat because he drools and his voice sounds differently but until very recently he did not voice his discomfort. It is much like having an infant that cannot tell you when and where they hurt. Once, when Tate was in preschool, he stood on hot concrete with bare feet until the bottoms of his feet had blistered. The blisters were the size of quarters. He could not walk for two days after that but he never really complained about the pain. I know he felt the pain because he refused to walk but he did not cry or whine. Even when I know Tate is hurting, if I ask him he is almost always going to tell me he is fine. It is frustrating for me, and for him as well I would imagine.

One morning three years ago, when Tate was ten, Tate came to his Dad and said that his ear was hurting. I was still in bed when they came in to tell me. I was wide-awake instantly and so excited to hear about this ear pain. Of course I was not excited he was hurting but so excited that he was able and willing to tell us this time that his ear was hurting. What a difference this could make in our lives. The ability to communicate his needs would be life changing for us. And it has been; because since that day, he has  told us when he is in physical pain on several occasions. However, Tate still cannot talk to us about his feelings or emotional pain.

When Tate is upset, his face gets red and splotchy. He might stim a lot, or even hyperventilate, but he cannot communicate effectively about what is bothering him. I have to “read between the lines” usually. For example, if I announce that it will soon be bedtime, Tate might make a comment like, “I will play with this tomorrow.” and I notice his face is turning red. Then I have to guess: maybe he wants to finish this game tonight, before I make him go to bed. But, he won’t say, “I am almost done. Can I finish this game before I go to bed?” He won’t argue with me about bedtime as my other children would either. I would LOVE it if he would argue with me about bedtime. That would be a blessing in our world.

I have tried and tried to make Tate understand that he has to TALK TO ME so I know what he wants and what he is upset about. I believe he just doesn’t understand why I don’t already know. It is the whole “theory of mind” thing I suppose. Tate does not know that I cannot know what he is thinking and he doesn’t understand I am not having the same thoughts he is having. If Tate is going to tell me a story, he doesn’t set it up. He might begin in the middle, thinking that I already know the setting and the background that I need to know to understand what he is talking about. It is like reading a book and starting on chapter five when I am trying to understand something he wants to talk to me about. Often he gives up out of frustration. If I ask him questions he might become irritated. If I misunderstand and ask him to repeat himself, he will usually say, "never mind" so I do not get a second chance to decipher the message. It is similar to playing charades sometimes but I do not even get the motions. I get broken sentences and partial thoughts that I have to string together like a detective. A friend recently asked me some questions about Tate. I described how hard it was to communicate with Tate, especially when he is upset. She likened it to trying to communicate with someone while each of you are standing on opposite sides of a great canyon, both people able to see the other one but barely able to hear the other. I thought that was a pretty good illustration of how it feels to communicate with Tate sometimes.

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  2. My son Duncan didn't use to tell us when he was in pain either, and like Tate, he never cried. I remember one time we were in the backyard and Duncan grabbed a really tall sunflower and pulled it down to look at it, and unbeknownst to me there was a wasp in the sunflower and it stung him right between the eyes. Out of the corner of my eye I saw him let go of the sunflower and I heard him inhale really sharply. He never made another sound. He just stood there like he was frozen. He was about 4 at the time. I asked him if he was okay and he just looked at me. His eyes were really wide and he looked terrified. He just didn't move and I noticed a white welt on his forehead. He never made a sound. It was the scariest thing ever. That was when I realized that we really needed to watch him to gauge his reactions in order to tell when he was hurt. At that point he was verbal, but had such severe apraxia that most people couldn't understand him. Add what appeared to be an unusually high pain tolerance to that? Scary. Even now at 15, when he is really scared or under extreme stress he can't speak. He is quick to action, but speech is not always possible.