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.

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When Red isn’t Really Red

I would like a word with the Crayola Company. Frankly, any maker of crayons, markers or colored pencils. I’d like to invite them to my home to observe the frustration Colin experiences when he’s required to do a coloring activity. Why? Because not one crayon in the box is labelled “Red”, “Blue”, “Green”, “Yellow”, “Brown”…you get the idea.

Colin doesn’t like to color for fun. His preferred style is to scribble with a Black crayon. However, when homework requires him to “Color the square shapes red”, for example, he’s more than willing. It’s required, therefore it’s a rule and he must follow it. (One benefit of his typical AS personality.) Because his fine motor skills are diminished it takes a LONG time to get the coloring to stay within the lines…but he’s meticulous in that task. What would take a neuro-typical child three minutes to complete takes Colin ten. IF he can find the right colored crayon to fit the job.

This is where my gripe with those crayon companies comes in.

Colin’s literal brain can’t use “Posh Pink”, “Rusty Brown”, “Blue Green” or “Amber Yellow” when his instructions call for pink, brown, green or yellow crayons. Even “Light Blue” won’t work if the required color is simply BLUE. We’re working through it … like we’re working through everything, but it’s not easy. He feels like he’s not doing his homework right.

I do love all the beautiful colors in a great big box of crayons…it’s just not Aspie friendly and I’ll be darned if I can find a normal box (other than with the kids meals at Applebee’s) of crayons without the extra hues thrown in.

Yesterday, I took Colin and his best friend (Yeah! he has one!) to the petting zoo and then for ice cream. Colin ordered his typical “Green” ice cream (read mint-choco-chip) and I got strawberry. He looked at my dish and uncharacteristically ventured outside his zone and asked if he could taste my flavor. He liked it! Cool…

HIM: “Mom, next time we come here I will ask the persons with the ice cream for a medium cup of strawberry…and then the time after that…which will be two times from now…which is the third time…I’m going to try the raspberry ice cream in a medium bowl.”

Well, okay I thought.

Later that evening he repeated this agenda to Liam at the kitchen counter while they ate dinner.

Colin: “Liam, I had green ice cream today…next time I go to the petting zoo I am going to have strawberry…I tried it and I think I like it…then the third time I go I will sample raspberry.”

Liam: “Cool buddy. It’s good to try new things. You want to try raspberry huh?”

Colin: “Yes, Raspberry is darker than Red. I don’t know what color Raspberry really is, but if I taste it, maybe I can find out and then I’ll know.”

There ya go, Crayola…just flavor the off-the-wall hues in the box and we’ll be fine!

Fun With Food

How to eat a cinnamon bagel:

Toast it on the number 31/2 setting (not 3 or 4) and wait for the “pop!” when it’s ready. Lather with cream cheese. Cut each half into 4 equal pieces. Eat all the cream cheese off the top with your index finger. Let it sit on the counter because Sponge Bob is on in the living room.

Now he won’t eat it because it smells cold. 

The child’s sense of smell has been guiding his decisions this week.  He has to smell it before he eats it (or wears it). White rice smells great and therefore tastes good. Cinnamon bagel smells cold, so can’t be finished.

One of our challenges with Colin is meal time. Since food is not his motivator, mealtimes are not always a pleasant experience for him. He’ll complain of being “really hungry” but eat two bites and is “so full.”  I don’t think he recognizes that his belly ache could be fixed if he’d eat.  Since he probably doesn’t taste food the same way we do, meals don’t matter too much.  He would also prefer to eat everything with his fingers so that he can feel the food on the way to his lips and that doesn’t always work out! I’m going to start using Julia Seinfeld’s cookbook, Deceptively Delicious. See if I can’t sneak some summer squash into that mac and cheese. Hopefully it won’t smell bad.

He LOVES chocolate milk. But…only the Extreme Chocolate milk from “the store called Giant”. Hershey’s syrup in white milk doesn’t pass the test, neither does powdered chocolate. We went to dinner at a local restaurant and he ordered chocolate milk. One taste and he could tell they used syrup. He wouldn’t drink it.

On the short list of things to eat are:
Mac and Cheese (Kraft or homemade). Hot dogs. Noodles. Bagels. Rice Krispies or Cheerios. Cracker, chips…tortilla chips preferably (we call them torties). Peaches. Pears. Green apples, sometimes with peanut butter. Jelly sandwhiches. And Danimals strawberry drinkable yogurt. Lots and lots and lots of Danimals.

The doctor said he’s healthy even though his weight is that of a 3 year old and for the first time ever, he’s made it onto the percentile chart!

I’ll take his word for it.