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.

 

Expertise

My son is 7 years old. He is autistic, but he has very little interest in understanding what that means. He has more important things to contemplate like Minecraft, board games, and planning skits with his plush toys. One night this week he got out of bed and came downstairs. I was on the couch watching tv in the dark.

“I’m scared,” he said.

“Of what?” I asked.

“I heard a very weird noise and it was coming from outside my window.”

I sighed, “No, that was your dad. He was making weird noises [meowing and squirrel calls] in the bathroom which is right under your bedroom. Come over here and sit with me and he will tuck you back in bed when he gets out.”

“Yay!” He climbed up and got under my blanket to snuggle. Then he spied something on the entertainment center. “Is that a battery charger?”

“Where?”

“There,” he pointed, “It looks like a battery charger beside the Xbox. What is that?”

I couldn’t see anything out of the ordinary. “I don’t know, honey. You’ll have to ask your dad. That is his area of expertise, not mine.”

“What is expertise?”

“It’s when you know a lot about something and are really good at it, like Dad knows a lot about computers and technology. What do you think is my area of expertise?”

He thought for a second, “Hmm, I think it is taking care of me.”

“You are right! I am good at taking care of you because I love doing it so much.”

I could not have been happier to know he recognized this part of me as the most important one. Yes, I am an author and spend much of my day writing. But I hope I’m always best known for other things, at least in his eyes.

I’m Writing an Autistic, Gender Nonconforming Character

I frequently put off writing my work-in-progress. I began writing this novel during the summer of 2015. I took a break at the end of October and wrote a completely separate Christmas novelette, which I had published by the first of December. So it isn’t that I have writer’s block. It’s that This Project is ominous. This Project is both extremely needed and extremely likely to upset someone(s).

I am writing this blog post now in hopes that airing my concerns, which for the longest time I remained in denial about, will finally set them free and out of my head. Hopefully, I can write this and move forward with my work.

The hangup is this: an important character, though not the main character, is a gender nonconforming autistic teenage boy. I do not know the specifics of how he feels about his gender because I have only now (as of yesterday) introduced him. I have put off writing about him for months because of how problematic his existence is likely to be.

There are many ways a person can be gender nonconforming. There are many words to use to describe a person as they appear and as they see themselves. There are also many words to avoid at all costs. I want to allow this character to define himself as the story unfolds, even for me as the author.

But here is the problem: gender nonconforming characters are rare. Representation in fiction is rare. There are a thousand different ways to present oneself within transgender, genderfluid, genderqueer, and other communities. Some desire bodily changes. Some desire appearance changes. Some see the world as the problem because society has mis-defined gender in the first place. These beliefs fall along a spectrum of degrees and not every person in these communities believe the same way.

To sum up my concern: I cannot write about a gender nonconforming person and have them represent an entire complex group of people.

Multiply this by 2 because the same thing applies about this character being autistic. There are thousands of ways to be autistic because autism is a spectrum disorder (even the word disorder is objectionable to some). My character is only being his own autistic and is not trying to be a poster boy for all of autism.

When writing a character who falls into an underrepresented category, people unfamiliar with such groups tend to think that character is, in fact, a poster boy. Look at what has happened with Rain Man. It isn’t that Dustin Hoffman did a terrible job acting his part. It’s that people assume every autistic person is like Dustin Hoffman’s role in the movie. Nothing could be further from the truth.

Every person who does not act in a way that is socially accepted for their birth-assigned gender *will not* fit into the same box and that shouldn’t even be expected. Why is there a box?

Every person who is autistic *is not* the same. They do not have the same struggles, strengths, or coping mechanisms.

So, why am I writing this character at all if it’s so difficult?  If this character was real, he would likely be very misunderstood by the general population. And even within the groups he would most identify with, there would be people not quite believing him. Okay… so maybe they would believe him, but would they believe *me* as I tell his story? That is what I don’t know.

I have an autistic son, but not an autistic teen. I care about autistic representation in fiction, but I am not writing about my son. This character is his own person and no one I know in real life.

I know well a number of gender nonconforming teenagers. I care about how this subject is represented in fiction, but I am not writing about the teenagers I know, nor am I writing *for* the teenagers I know. This character is his own person and this story comes from within me.

Not to imply that real life humans have not informed me about who this character is. I have listened to many people’s grievances about how they are misjudged and stereotyped. I have thought about these problems on a very personal level because of the people in my life. I do not want to do harm to any community by the way my character is represented to a mainstream audience.

It’s a fine line, one I feel confident I can figure out how to walk. It is important to me that I do figure it out. But, it is also terrifying because I know, beyond a shadow of a doubt, that someone(s) will feel I did an injustice in the way I created this character. He will be picked apart no matter what.

And that is why I struggle to make myself write him into life. And maybe this speaks to why many other authors simply write cookie-cutter characters instead of risking having their characters unintentionally speak for entire groups of people.

I am not perfect.

My character is not you.

I love my character.

I love you.

And I hope some good comes of it all.

Teaching Autistic Kids about Consent

My autistic son wasn’t always affectionate. As a baby, he pulled away from embraces. Looking back, I am sure there were many times I stopped breastfeeding him because I thought his turning away or crying meant he didn’t want milk. There are many, many things I misinterpreted before his diagnosis. Because of that, even today when he is 7 years old, I try really hard not to prematurely assume things about his behavior.

As a toddler, my son became much more affectionate. He liked the deep pressure he felt from hugs. He liked to drape himself over my lap and roll around. I knew he wasn’t just doing it because he loved me, but also because it served a sensory purpose. But I valued it anyway.

Now, my son is still very affectionate, but expresses much more love for us while being that way. He crawls in bed with me in the morning and rolls up in the blanket as tight as he can get it, scoots really close, and then presses his feet against my thigh, or bends his knees and presses them on my hip.

His way of expressing affection looks something like this:

“Oh, Baby bird,” He’ll say in a high pitched voice, “You are so cuuute!” He will hug whatever body part is near him, my waist or my arm or my leg or my face, and squeeze tightly (sometimes suffocatingly). “Whee!” He will say and take my long strands of hair in his hands and cross them in front of my face so that if I speak to him I will immediately have my own hair shoved in my mouth. “You are sooooo cute, Baby bird. You are just a delicate flower!”

It’s kind of like torture love. Still, I am incredibly thankful for every single word and every single (excessive) embrace.

But I have recently become aware that it is time to set boundaries. I know my son is completely innocent in his motivation. I know my son is still years behind with his social skills. I know my son has a valid excuse for not acting as his peers in regard to displays of affection. I am in no way saying that his actions should not be viewed through the lens of autism.

But he can’t kiss people. He can’t go to school and embrace his peers and kiss them because he loves them. That might be okay at age 3. It’s not okay at age 7, autistic or not.

I happen to be quite firm in my belief that everyone should be taught to respect consent. You might have noticed from my other blog posts that I am very concerned about the effects of sexual abuse and assault. I incorporated this concern into my parenting by personally asking permission before kissing my kids and allowing them to request physical space, even in an argument, if they think we are standing too close. I have done this with my son especially.

“Can I kiss your cheek?” I’ll ask.

My son will nod or he may tell me no. I respect his answer.

But now the roles are reversed. My son has a new found joy in kissing. It is absolutely a sensory thing. It is absolutely fueled by his autism. I am not faulting him for this. But, I have to address it.

Personally, I don’t mind it so much because I know it *is* sensory. But will everyone know this? No, absolutely not. No one except his family will permit it. That is reason enough to take on the challenge of teaching him about personal space. But in addition to people not accepting that behavior, there are also people who will be triggered by it because they have been abused. Even scarier, this behavior makes children easier to victimize.

Here are the actions I have taken and the rules I’ve established. We will see in the coming weeks what effect this has:

  1. Define personal space and explain why it’s important to respect it with everyone. Let him hear me use the phrase “personal space” where it applies in other conversations, such as when disciplining his sisters for fighting or roughhousing.
  2. Rule: “Ask first before hugging or kissing.” As badly as I want his hugs and as much as I do *not* want to push him away, I do it anyway and make him ask first. I do not expect this to deter him from hugging or kissing. He is seeking that sensory input, so if the rule is he must ask first in order to get it, he will ask. (This is my hope, we shall see.)
  3. Rule: “Do not hug or kiss anyone, ever, at school.”. Perhaps I should make this rule more broad. But because school is the immediate concern, I am keeping it focused on that. Once he accepts this rule for school, I will broaden it to include other places he goes.
  4. Rule: Kisses can only go on cheeks, foreheads, or hands. Nowhere else.
  5. When he asks, “Can I kiss you?” I tell him where and how many times. I do not simply say “yes” or he will machine gun kiss wherever is closest. I say, “Yes. You can kiss my cheek two times.” He does, but will simultaneously grab some strands of my hair and cross it over my face when he’s done. So… we’re still working on that. (BTW, I plan to solve this hair issue by whacking most of mine off. It would be one less distraction.)
  6. Make a suitable consequence. I am not trying to teach him that kissing is equally bad as hitting. So the consequence is something like, “You will lose ten minutes of electronics time.” It’s not a big deal, but it does get his attention enough to make him think about his actions. Ideally, I want him to follow these rules because he understands the importance of personal space, not because he’s afraid of losing electronics time. But, you and I both know it’s not that easy with most kids. If I sense that he begins to do it just to cause a negative reaction, then bigger consequences will apply.

I write about a lot of things here, not always Autism. But this particular topic is for the parents of autistic kids who follow my blog. Despite writing about many topics, most of my readers find me through searches about autism, about which I am no expert. I simply share my own experiences and what little bit of knowledge I glean from raising my son and hope it helps others. If anyone else (parent, teacher, or autistic) has something to add about this topic, please feel free to post a comment. I’m curious to know if you have dealt with this, what has worked, or what did not. Your insights are just as valuable as mine. ❤

The Very Best Boy Goes Back to School

Today is the first day of the school year. My girls were happy about that. My son, not so much. He is going into second grade this year and has been dreading it since the last day of school last year (forever, actually). Last week we had a Meet-the-Teacher Night. He seemed eager to take in everything: the layout of the room, the names on the desks, the beanbag chairs in the corner, the lost and found area, the posters of space. I think, at that moment, he was looking forward to going to school. So it isn’t that he hates school. It’s that school is hard work and a place with endless possibilities for something to go wrong.

Last night when I tucked him into bed for the second time, I noticed (again) just how much he has grown. His big brown eyes looked up at me, unusually focused and searching. Normally at bedtime he talks to his toys and ignores me. But not last night. He needed me to calm his nerves.

Me: “Do you remember when I used to tell you all the time that you were the best boy? My favorite boy? You still are.”

Son: “The best one?”

Me: “The very best one in the whole universe.”

Son: “Why am I the best?”

Me: “Because you are witty, and smart, and you work so hard at everything you do.”

Son: “And I am creative?”

Me: “Yes. You are very creative. You come up with so many great ideas that I would never even thinking of.”

He nodded and his eyes widened: “I am the very top. The best little boy.”

Me: “Yes.”

Son, whispering: “Wow!”

He went to sleep fairly easily after that.

This school year, there will be many challenges for him. There will be a lot of things other kids seem to do easily which he will struggle to complete. But, there will also be things my son will do above and beyond what his classmates can do.

I don’t know if my son can see the big picture, that everyone struggles and that everyone has someone who thinks they are the very best. Right now, the big picture doesn’t matter. All that matters is that my son knows I believe in him.

Grocery Shopping with Autistic Kids

My son earns a $1 for pushing the shopping cart in the grocery store. This is part of his Occupational Therapy homework I came up with after watching him crash a shopping cart into five things in under two minutes. I made a deal with him. If he can navigate the cart at a slow pace without hitting anything, he earns one dollar. If it is a long store visit (over 30 minutes), I give him the choice of continuing and earning a second dollar.

Before we started doing this, he would stand on the lower bar of the shopping cart and lean his back against my chest while I pushed him around. He made zero effort to hold himself upright and was very much like a rag doll. He had no reason to pay attention to anything, not even his own safety. He left it up to me to keep him from falling. So, it was a real workout for me to shop with him. When I finally decided he’d have to walk on his own, because an almost-seven-year-old boy should be able to do that, he was still hungry for that pressure he got while standing on a bar and pressing against me or draping himself over my arms.

Pushing a shopping cart also gives him pressure, but there is focus and effort involved. It is not as easy as it looks. Both hands have to push with different pressure to steer, and the force used to push forward must be balanced with ones ability to turn left and right. My son really wanted the money, or he would have given up. And, today when we got a cart which constantly veered left, he did give up.

His behavior in the store is greatly improved when he is given this task. He is present, in the moment, and actually enjoys the challenge as long as he is having a certain level of success. Being successful is really important.

When we finish filling up the cart, I also ask him to help unload everything at the checkout. His willingness to help me is greater if he has been helping push the cart than if he has been riding on it.

I hope this idea is something that will work for you and your child. Every little bit helps. Is there anything you do while shopping with your child to serve a double purpose?

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.