We All Need to be Understood

After my little vent yesterday I thought it would be good for me to repost this 2009 blog entry just to keep it in perspective.

Autism is a puzzle with more curves, corners and pieces than any of us know.

One of the hardest things for people with AS is empathy. Coupled with the inability to appropriately initiate social interactions, children with AS have little understanding of how their actions and words affect others. Most neuro-typical children struggle with it, but can be easily taught to imagine how someone else feels. AS kids can’t imagine that.

On the other hand, all relationships are reciprocal. So, those of us who interact with someone that has AS need to also be able to empathize with how THEY are feeling or seeing or why they are behaving the way they are behaving. Only, we can’t. We can’t imagine that.

Imagine that sounds are painful. The vacuum cleaner sounds like a fire alarm. The fire alarm sounds like a jet plane. The water gurgling through the radiator stops you from wanting to play in your room alone.

Imagine that being in a crowded room or restaurant makes you want to spin in circles and hide under the table. If someone strange sits near you, you won’t be able to finish the meal. You’d rather just make loud silly noises to make yourself feel better.

Imagine that only six or seven foods taste good to you. Maybe it’s not the taste…but they feel and smell safe, so you’ll eat them. Imagine that you could not try new foods, even if they are pretty ones, because you don’t know them.

Imagine that you can’t understand what people’s faces are saying. They get all twisted up, twitching, smiling, frowning all the time they are talking. They want you to look them in the eye, but if you do that you won’t be able to concentrate on what they are saying. It hurts to look someone in the eye. Sometimes you can’t hear the words because you are too busy trying to figure out the look on their face.

Imagine that collars, tags and zipper pockets make your skin itch. Your Mom bought PJs and the “out parts” of the sleeves are too tight on your wrists. Makes it hard to fall asleep.

Imagine that you couldn’t tell when someone didn’t want you to touch them anymore. You like touching people’s clothes or licking them or blowing on them or just getting as close as possible. Why won’t they let you do that? It’s how you tell someone you like them a lot. How else are you supposed to do it?

Imagine that you can’t answer open-ended questions without anxiety. So instead, it feels better to just say “AAAHHHH!!!!” Why does everyone want to know if I “like school” anyway? I don’t know.

Imagine that making changes or transitions from one thing to another is really, really hard for you. All you need is a little warning that something else is going to happen next…but most people won’t do that. Imagine that taking an alternate route home to avoid traffic would make your world spin out of orbit for a while and you’d cry a lot about it.

We could all use a little empathy.

Smell My Blanket

Over the past few weeks, I’ve noticed Colin trying to figure out how other people are feeling. It’s obvious to him when someone yells or gets loudly angry that they are not in a good place with their feelings, but it is the more subtle irritation, frustration or sadness that he’s studying. He doesn’t seem to care too much about any of it unless he feels that he may have done something to cause a shift from happiness to anything else.  That’s when he starts to think about it.

One of the hardest parts of Asperger’s is the inability to empathize with someone else. Colin will understand that when he feels hurt, sad or angry that he doesn’t like it. However, he is unable to make the connection that someone else with those feelings isn’t feeling good either. For example, he doesn’t understand that by walking up and smacking his brother to show him how much he loves him actually physically hurts and isn’t appreciated.  But lately, he’s been starting to try to figure it out.

A few weeks ago, I made a big mistake. I had forgotten to pick something up at the store and had to hurry to get it done before the older kids got home from school. I didn’t give Colin his usual time warning that we were heading out, instead I did what most parents can do with a typical child and said, “Hey buddy, we gotta run to the store quick. Go get your coat on!” 

Big boo boo.

He burst into tears and threw himself on the floor. So, naturally I got irritated with this behavior.

“Come on, Colin. I’m counting to 3 and if I get there, you will not get to watch TV again today!”

“NO!!!”  He begins to kick the floor and heads into a full out tantrum.

I literally picked him up by the arm and nearly dragged him into his coat. Forced him out the door and into the car where I angrily yelled at him that he had disobeyed and I was NOT happy.

Now, this is not the way to treat any child. Colin’s reactions came from the fact that I had not prepared him for the change the way I needed to and then I lost my temper because of that. So, it was all my fault.

But, as I got ready to shut his car door he tearfully said, “Mommy, I have something that might make you feel better.” And planted a big fat kiss on my cheek.

After apologizing to him for losing my temper and for not giving him enough time to prepare for the change in routine, I calmed down enough to realize that this was the very first time ever that Colin had done something like that.  He has learned to apologize for things he has done because we taught him to do that and it is a “rule” so he follows it.  Never before had he done it with the intent to make someone else feel better.  I sat and looked at him for a few minutes before he reverted to usual Colin and said “Turn it up and get the map!” (Always must have GPS going during a drive). For a few minutes, though, he’d had quite a different and softer look to him.

I saw it again today.

Colin has a flannel blanket with baseballs and bats all over it. His “Baseball Blanket.” Soft and warm, this blanket has covered him in bed since he was born and he still sleeps on top of the covers with only the Baseball Blanket on top of him. Sort of like his safety net, he carries it from his room to the living room every morning and back again every night.

Before heading off to school this morning, I asked Colin to turn off the TV. He did so willingly and then threw the remote control onto the couch. It missed, bounced and hit the floor hard. He immediately grabbed it up, looked at me and said “Sorry!”  I wasn’t angry or irritated but I must have made some kind of gesture that he interpreted as being upset at him. Suddenly he was running at me with the Baseball Blanket and shoving it in my face.

“Do you want to smell my blanket, Mommy? It’ll make you feel better. That’s what I do!”

What a challenge lies ahead in teaching this young child how to know what others are feeling. How do you teach empathy to someone who doesn’t understand his own feelings yet? We will need a lot of grace and patience as we work this out with him. 

But we’ll definitely have the Baseball Blanket along for the ride in case we need a good sniff to lift our spirits!