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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Does it hurt?

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 Tate responds to pain differently than I do. 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 at 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 he does 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. I do not know why.

When Tate is upset, his face gets red and splotchy. He will stim a lot, and even hyperventilate but he cannot (or will not) communicate about what is bothering him very effectively. I have to “read between the lines” usually. He might make a comment like “I will play with this tomorrow” and I notice his face is turning red. Then I guess: he wants to finish this game tonight, before I make him go to bed. He won’t say “I am almost done. Can I finish this game before I go to bed?” Or, he might say: “Sydney is playing with that car” when he should say “Sydney just took that car out of my hands and I want it back.” I have tried and tried to make him understand that he has to TALK TO ME so I know what he wants and what he is upset about. He just doesn’t understand why I don’t already know. It is the whole “theory of mind” thing again. He doesn’t know that I don’t know what he is thinking and he doesn’t understand that I don’t have the same thoughts he is having at the same time. He does not understand: If I didn’t SEE Sydney stealing the car from him then I don’t know it happened and he has to tell me. He just doesn’t “get it.” If he 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 ten 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 and then I never get to know what he wanted to tell me. He will NOT repeat himself and he will NOT work at helping me to understand what he means. 

I got off topic…. Back to the pain threshold:

Sydney does not have autism but Sydney’s pain threshold is extreme. When she was a toddler and learning how to walk, she fell down and busted her lip almost daily. She never flinched. I would see blood and wonder how she could stand it but she did not seem to feel a thing. I taught her to say “ouch” when she fell and I had to teach her to come and get me if she saw blood. Even after she learned to say “ouch” when she fell she still didn’t seem to care that she took a hard fall. I have never known anyone as tough as Sydney. She can take quite a tumble off of playground equipment or bump her head really hard and not even stop to notice. She gets goose eggs and bruises and doesn’t even know where she got them in her rough play. However, she has become quite a drama queen about blood now. She has learned to love attention and she plays up the smallest blemish these days. If there is something more exciting going on around her then she still ignores blood though. Ironically enough, running a comb through a tangle in her hair will send her through the roof. I cannot figure that one out. Ha!

Tate and Sydney 

Tate and Sydney can both ignore cold to a certain degree too. When I am freezing and telling them to bundle up, they want to go outside without a jacket.  Sydney has no “meat on her bones” so she almost turns blue before she wants to come in out of the cold. If she plays in the snow she will stay out and ignore cold fingers. I have to monitor and keep dry mittens on her. I've even put hand warmers in her pockets or inside the mittens with her fingers so she can stay out longer. Twice I was almost sure her fingers were frost bitten when she was little. As we held her hands under room temperature water trying to slowly warm them she was screaming. So... She does feel pain, eventually. Now in the winter I plug in a heating pad when she goes out and call her in once in a while to warm her hands. She just cannot monitor the cold and know herself when she's had enough. She can either ignore the pain or she does not feel the pain until it is intense. I am not sure which. 

And speaking of temperatures, Sydney loves hot water. I will not, and cannot, make her bath as hot as she wants me to. We have the same conversation every time. Sydney says, “Make it really hot, Mom.”  I say, “Sydney I cannot run a bath any hotter or you will burn.” When I run water that would be just right for any of the other kids, she complains that it is cold. I suppose it is just like any of her other strange sensory needs and it all comes from her birth mother’s alcohol consumption. I hope she outgrows the love of hot water soon though because I may never be able to allow her to run her own bath. I can just see me following her into the bathroom when she is in high school to test the water (NOT). 

If you liked this post, here is one similar: Under Construction

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