Sweet Signs of Empathy (Autism)

Facebook shares memories of our posts from the past. Today it reminded me of a post I made in 2013 when my autistic son was 4 years old. The post was made only a month after we moved 900 miles from our old home in Tennessee. My son was still adjusting to his new school, but most of his fears were carried over from the school he had just left. He was afraid of the sound of whistles at recess. He was afraid of an alphabet video his teacher played during snack. Every morning was a struggle to get him to go to school because these fears were all-encompassing. He couldn’t see past them to the fun he would have. His teachers knew of these fears and took measures to not blow the whistle or play the video, but my son was still afraid. So every morning I said the same reassuring words to calm him.

On the day of the Facebook post, I had had something bad happen. I don’t remember what it was, but it had to have been bad because I was crying. I seldom get pushed to that point these days. But there I was lying in bed, crying to the point of sobbing. My son climbed onto the bed with me and pulled the blankets up so he could get under. For a while, he just stayed very still and looked at me. I probably looked strange to him with my face and eyes all red and wet from crying.

He never was one to stare, so I let him for as long as he needed to. As it turns out, he was trying to think of a way to help me stop crying. He put his hands on my face and told me the exact words I told him every morning when he didn’t want to go to school. Then he asked me to tell it back to him. We took turns saying it until we both were giggling.

“They will NOT blow the whistle today. They will NOT play the video you don’t like. They just WILL NOT do it.”

It was an amazing moment in our journey. Never believe that autistic kids do not have empathy.

 

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The Meaning of Should

My first grade son is autistic. My fourth grader is in class with an autistic boy. When she tells me stories about the boy, (I’ll call him Drew), I listen to the words she says but I see in my mind the future for my son. I know every autistic child is different. I will give room for my son to be whatever he will be, better or worse, and love him just the same. But what lies ahead is such a mystery with so many possibilities.

The story my daughter told yesterday about Drew did not make me think of my son’s future as much as I thought of his past. There is a consistent trait among those on the autism spectrum which is to take things literally. Common misuse of words is accepted by most of us, but flies under the radar of ASD kids. As an added complication, when autistic kids speak literally with their learned use of words, they are often misunderstood because other kids learn the common misuse of those words or a variety of uses not yet explained to the autistic kid.

So, before I tell you the story, I have to say that my response to it was to say, “awww” in a way that meant I thought it was both cute (because it reminded me of my son), and sad for Drew. My daughter said, “Why did you say, ‘awww’ about what he did?” Because she, and probably all of her other classmates, did not understand the inner workings of Drew’s mind which caused this event take place. They thought he had been bad.

The story:

In music class, the fourth graders are learning to play the recorder by doing what is called, Recorder Karate. If they successfully play a certain song, they get a “belt”, which is a colored string to tie around the base of their recorder. My daughter is on red, which means she will next try for brown, and then her black belt. Drew was on his brown belt and trying for his black belt. (I was very impressed that Drew was doing so well playing an instrument and it made me hopeful for my own son.)

Well, Drew did not play the song well enough to earn his black belt. The music teacher told him he would have to try again the following week. Drew was upset and began to cry, but it was not a meltdown. He was just sad.

After they walked back to the classroom, another classmate noticed Drew was crying. The classmate said, “You played that song really well, Drew. You should have gotten a black belt.”

Drew got a big smile on his face and jumped up and down, clapping.”Yay!” He said, and ran out of the room (breaking a rule), and all the way to the other side of the school to the music room.

My fifth grader interjects here to say, “That was Drew? We all heard someone running down the hall. My teacher opened the door but whoever it was had already gone out of sight.”

My fourth grader laughed,  “Yes, that was Drew. He went into the music room and grabbed a whole handful of black belts and tried to yank them off the hook. When the teacher told him he couldn’t have one, he started screaming and had to be taken to the resource room for the rest of the day.”

I felt so bad for Drew because I knew he misunderstood and thought “You should have” meant he literally should have. It’s a phrase we avoid with my son unless we are telling him a rule. Because to him, what is the difference between these things:

  • You should walk in a straight line.
  • You should keep your hands to yourself.
  • You should raise your hand before you speak.
  • You should have gotten a black belt.

Because Drew was instantly happy and not mad by the statement, “You should have gotten your black belt,” he obviously assumed it was a rule he didn’t know about. He thought it was an absolute fact that he should get it. If he had understood it the way the classmate intended, Drew might have gotten upset or resentful, but would have likely not gone to the music room and attempted to physically get one.

So why did he grab them all? Fine motor planning is difficult.

Here is where I see the tragedy in this story:

Not one person had all the details. I’m not sure if any teacher knows that the classmate told Drew he should have gotten a black belt. Without that key piece of the puzzle, how can they assess what was happening? How would they know that Drew was doing what he thought he “should do”? To the teachers, Drew was breaking many rules and it’s human nature to believe he was angry about not getting a black belt. And maybe Drew was a little angry about that, but it wasn’t his motivator.

The classmates were in an opposite position. They all knew that Drew was told he should have gotten a black belt and they thought it was funny that those words had sparked Drew to do what he did. But they didn’t know why that happened. To them, it was unusual. An unusual kid did a rebellious thing, he broke the rules in a way a lot of kids envy, and when it was all over, he was still just an unusual kid. Everyone laugh, now.

I see it in my own son that he knows he doesn’t quite fit in with the other kids. Lots of kids will call out to him to say hello, especially kids in the older grades. He has potential to be a popular kid, one everyone knows and mostly everyone loves. But… who will understand him?

It is no wonder many autistic kids, as well as adults, are closest to their primary caregiver. Being understood and not needing to explain with words is heaven. Being misunderstood and unable to find the right words to explain is hell. I’m not sure when it was that Drew finally understood for himself what had happened yesterday. It couldn’t have been easy. I just hope he was able to find a moment of peace to build up his strength before going back into what must feel like an alien world. All that ordinary looking stuff autistics do at school is hard fought to accomplish. They honestly deserve many black belts for more than just Recorder Karate.

Verbal Stims and Bad Words

My autistic son is almost six. He has discovered a few “bad words”, which he read on Minecraft chat. The rule I made is, “No saying bad words or I take the laptop.” I only need to tell him one time which words are bad and he remembers. But occasionally he slips up. When I remind him of the consequences, sometimes he becomes very upset. Yesterday he hit me with a shoe for reminding him of the rule. He was so upset that he ended up on my lap in tears.

He said, “I want to say bad words!” I explained that he couldn’t.

He said, “Then you say the bad words!” I explained that I couldn’t either because I was a good mom.

He said, “No, you are a rude mom!”

He was so upset that he didn’t want to play anymore. He fell asleep on my lap.

I couldn’t make sense of why he was so fixated on bad words until a few hours ago, and then it hit me. I’ll explain by starting with some history.

My son was late to speak and even later to actually communicate. His first word was “W”, which isn’t a word, but “double-you” sounds like two words. W is the first letter of his name. He quickly learned the entire alphabet, but would not say “Mommy” or “Daddy” until he was three and half.

We were still spoon feeding him when he was just shy of three years old. He happily flapped his hands and opened his mouth for bite after bite. One day he leaned his head over to read the upside down word “sausage” off the box of gravy we were feeding him. We were stunned.

My son has always loved letters and words. Though he didn’t communicate well at all, he spoke a lot. He could identify over 60 fruits and vegetables. He could tell you which plant was cilantro and which was fennel and a handful of other herbs. He learned to match words with objects because it mattered. He learned to read and spell words because it mattered. He seemed to know that the key to communicating was somehow linked to his ability to match words to things. Picture dictionaries were better than chocolate cake.

A lot of what he said was echolalia or delayed echolalia. He repeated words and sentences he heard on tv or from us. He made up words and repeated the ones he liked. He still does this at nearly six years old. There are words that are his favorites, like ‘pants’ and ‘octopus’.

He verbally stims. Sometimes when he is stressed, he will make really loud noises like yells. When he is excited, his mouth moves instinctively to make sound. It is enjoyable to him. He surrounds himself with random sound.

Sometimes I will hear him sing and I want to sing along. I repeat the lyrics back to him and he seems to come out of a happy zone and tell me to stop talking. At that moment, he doesn’t want to communicate. He just wants to have time with his words… alone.

Sounds are like a swimming pool on a hot day. They are pure pleasure. Imagine yourself there, floating on your back and kicking your feet to move around. Your body feels lighter and every inch of your skin is wrapped in warmth. Someone screams, “Snake!” Oh, crap, get out of the pool! So, you get out safely. But, now the pool isn’t so enjoyable because you have to keep watch for snakes.

“Bad words” are the snakes. He knows they might slip out of him when he’s enjoying echolalia and beautiful words that physically feel good to say and hear. Now the entire experience of vocal stimming is more stressful. He wants to get lost in it, but he’s a good kid and he doesn’t want to say bad words.

He came up with a great solution. He just needed to convince me to like all the words. If I could say all the words, then he could, too. And he wouldn’t have to police himself when all he wants to do is drift on the waves of his own voice. But I refused and that means I’m a rude mom.

Now I understand why he gets so upset at my rule. He’s trying so hard and he still trusts me to guide him through right and wrong. I feel bad for him, but I know he’s smart enough to figure this out.

As for my part, I see that he isn’t being defiant. He’s being mournful. I need to hold him more, scold him less, and trust him as much as he trusts me to do the right thing.

The Truth We Tell About Autism

I could tell you the whole truth about me, at least, all of it I have come to terms with and understand. I could be 100% honest with you about all of my fears and faults.

But I can’t tell you the whole truth about my family, my neighbors, or my friends. Those truths are more subjective and not always mine to tell.

The truth about my autistic son, for instance, would depend on the person you asked. Even asking me would not get you an accurate answer because I’m not him and I don’t know everything he thinks and feels. Asking him will not get you a straight answer, either. I could write an entire post of truths and convince you that my son’s autism makes him a super hero of perfection. I could write an entire post of truths and convince you he is a horrible human being. He is neither. Trying to paint him as either of these things takes away his humanity, the very thing so often overlooked in autistics.

Overlooking the humanity of children in general is already too common. We forget that kids, like adults, don’t just follow rules for rules’ sake. We feel, we fear, we desire, we misunderstand, we struggle to define our self and space. We screw up, sometimes on purpose because, “To Hell with it,” we say.

The other day at OT, my son and I waited in the lobby. I sat in a chair while he stood facing me. He held handfuls of my hair and crumpled it up in a ball and twisted it around his hands while saying loudly, “Hoopa-hoppa-doopa-doppa, I did your hair!” He thought this was hilarious. My hair has no style, so I didn’t care except that it hurt. If I had made a big deal about it, there was a chance he would have started hitting my head instead, or pulling it harder. He would have laughed harder, too. When things get “bad” everything becomes “more”. It’s a coping mechanism he has in response to stress. So, I choose to steady my tone and try distracting him instead of demanding that he stop. I have learned the art of restraint and diplomacy out of necessity.

The therapist came out and asked how he had been doing. I said things were still going great, but he had come home from school with a couple of frowny faces due to acting out in frustration. I said, “It wasn’t anything intentional.”

She said, “Oh, I know that. I don’t think he could ever do anything bad intentionally. He’s always so happy and cooperative, really trying to do what I ask of him. He’s a sweet little boy.”

Yes. That is a truth. What she said is sometimes a hard truth to see about him. But, it’s there.

Nearly every time special needs people go out in public, they get stares. People wonder, “What is wrong?” Or  they think, “How miserable that life must be.” No one stops to stare at autistic people with curiosity; wondering how intelligent they might be, how witty, or how kind.

Why would I publicize the parts of my son’s life that only further the pity and ableism? I’m not going to tie his hardships like a bow on his head for all of the world to unwrap like a tear-jerker novel, the tag saying “please follow this link to donate”. (There is no link to donate here.) Most of his hardships, like yours, don’t benefit from being exposed by someone else.

You might say, “But how will people know what autism is really like if you aren’t willing to share with us the gory details of the cleanups and tantrums?”

Well, the cleanups aren’t his. They are mine as the parent and not very fun. And telling you about them might make you feel sorry for me, but it wouldn’t help you understand autism. The same might apply to the tantrums, each for its own reason. I could tell you how hard it is for me, and you could pity me. But, I don’t want to perform for pity in a mask of autism awareness. If I want to talk about my own hardships, I’ll just label that parenthood.

This is the hurdle information needs to clear. Is it going to educate people about my son’s humanity? Is this information going to allow people to see him objectively in ways that move beyond pity and fear to allow for better understanding? Am I projecting my own assumptions onto his behavior? Believe me, parents are the worst for assuming they know why their kids are doing things, and I’ll admit to often being proved wrong. I mean, I am the mom who completely ignored an entire year of blatant signs that he was autistic. And then after diagnosis, I was the mom who was convinced he would NEVER say “Mommy”.

Instead of wrongly projecting myself as an expert in autism parenting, I like to think of myself as an unusually humbled parent. I have learned through my son that I can’t always know why things happen or how they will turn out. This acceptance of my own limits of understanding has affected my parenting with my three girls, too; how I view every single person I encounter has changed. When things go badly, I try my best to understand why and figure out my role in making it better. But, I am willing to accept that I may never know the answers. I don’t have ESP.

The person my son is is affected, but not defined, by his autism. His autism is uniquely his. His way of being, perceiving, experiencing the world is unlike anyone else; as is yours. He is a complex person with feelings and thoughts. He will grow up one day in the world we help educate about his diagnosis. If you are a parent of an autistic child, please consider your words before you tell the world what your child is like; consider your own limits of understanding. It’s easy to say how we, the parents, feel and what we see. The world is already uncomfortable with our children. They already gawk. If we have nothing new to offer these strangers who read our words, are our terrible truths promoting autism awareness or propagating the painful assumptions that our children are less human?

And, it doesn’t make it more acceptable to end a dehumanizing account of a traumatic episode by saying, “But I love him anyway.”