30 Days with Autism, Day 13

ORIGINALLY POSTED APRIL 13, 2012

April 13th: Autism has taught me that just because emotions are harder to articulate doesn’t mean they aren’t felt.

When you can say anything, nothing you say feels important. When you can’t say anything, everything you say is important. Before K could ask for a glass of milk, she could recite Dr. Seuss’ “Green Eggs and Ham” from memory. She could turn a page, look you straight in the face and tell you, word for word, the part of the story that played out on that page. Echolalia (seriously, don’t ask how to pronounce this, everyone seems to do it differently and I’m beginning to wonder if any of us are right.), anyway, echolalia is a form of communication. According to Dictionary.com, it’s a noun meaning:

1. In Psychiatry . the uncontrollable and immediate repetition of words spoken by another person.

2. the imitation by a baby of the vocal sounds produced by others, occurring as a natural phase of childhood development.

Now, I have to tell you, in my experience echolalia is not something that has to be immediate in response. It can be immediate, such as when you ask a toddler if they want some milk, and they reply “Want some milk”. Or when you ask a child if they want “milk or juice”, they answer “juice”, but when you ask “Do you want juice or milk?” they change their answer to “milk”. That’s an immediate echolalic response based on the last option in the series. This is not always the case for children who, like K, use echolalia as a primary form of communication. It took a lot of frustration on my part to understand that she was only using what she had available to her. There were times in my most frustrated moments where I would say things like “I don’t want to talk to ‘Olivia’, I want to talk to K.” or “Do I have to talk to Kai-Lan, today? Can’t I talk to you.” I didn’t realize then that she was using the only thing she had, scripted phrases.

Is that filed under “WTF” or “LOL”?

The easiest way to describe it is this:
Picture a Rolodex.
In it, most people keep contact information for family, friends, business partners, co-workers, the dry cleaners, random people, or places they may need the phone number of. For people like K, they put phrases in their Rolodex. They may be phrases from books that have been read to them or TV shows they have watched, even lyrics from a favorite song. While we group our phone numbers by relationship to us, or alphabetically, K has put her phrases in order of social situation. These are phrases you use with family, these with friends, and these when conveying emotions. When a question is asked or some response is expected, K can flip through her Rolodex, find a phrase that best matches the context of the situation and apply it. After a while she is able to substitute certain words for others and make her meaning more clear. For example, in the Nick Jr. show, “Ni Hao, Kai-Lan”, Kai-Lan is a young Chinese girl who lives with her grandfather, whom she calls “Yeye”. When something happens in the show to make Kai-Lan excited or happy, she says “(insert item, place, or person here) makes my heart feel super happy!” K attended mid-week Bible studies. In the AWANA program, at that time, she was a “Cubbie”. After study one week, we were leaving the church and I asked if she had fun at Cubbies. She replied with a long thought and they blurted out, “Being at Cubbies makes my heart feel super happy!” That meant, “Yes mother, I had a wonderful time this evening at Cubbies with all of my friends.”

When K gets too excited for an event, she gets sick. To illustrate this concept, let me tell you a little story. Close your eyes (but not for too long or you won’t be able to keep reading), now imagine you’re sitting at a table in a restaurant, say Olive Garden. You, your spouse, your children. You’re all sitting there enjoying your meals. Your oldest child is having a birthday today and after dinner you have a special surprise. You are going to take them to Toys R Us after dinner to pick out their own birthday present and then to a Chick-Fil-A for ice cream. It’s been planned for weeks. You’ve told your child there will be a surprise after dinner. So, you’re sitting at the table finishing your meal. The server brings you the check when the birthday kid claims to not be feeling well, very suddenly, and after no previous sign of any illness. After a few minutes, your child again tells you that they are feeling “sickish inside”. At which point you clarify, “sickish in your bottom or sickish in your mouth?” (I should clarify that when K gets constipated, she often feels the same as when she feels ill. “Sickish in her bottom” means she needs to go poop. “Sickish in her mouth” means she’s going to throw up.) Your child tells you “in the mouth”, at which point you get up from the table headed for the bathroom with your child. No sooner do you get out of your chair does your child stand and promptly throw up all over the table! Did I mention they serve chocolate milk at the Olive Garden? Your server, who was nearby at the time, rushes to the table, dumps the bread basket out and holds it under your child’s face while you rush to hold hair and clothes out of the way. Walking to the bathroom, your child seems fine again. In the bathroom, your child is cracking jokes and making silly faces in the mirror as you wipe vomit from their face, sleeves, shirt and pants. To see your child now, you would never guess they had just puked up three glasses of chocolate milk all over the table in a semi-crowded restaurant. Talking to your child, you discover the reason for the whole trip to the bathroom: butterflies. (When K gets excited, we call them butterflies, so she can identify the feeling in her stomach.) There were so many butterflies in your child’s stomach; they had no choice but to get sick. Your child is disappointed and upset that they will have to go home and change and won’t be able to have their surprise tonight.

If only real emotions were as simple as emoticons.

That’s the way it is sometimes. Just because your brain won’t let your mouth articulate what your heart is feeling, doesn’t mean you’re not feeling it. It doesn’t mean you feel it any less. It doesn’t necessarily mean that you feel it differently. It means you can’t always communicate it. When you are worried, scared or frightened, you might throw fits to have your mom come closer. You might get out of bed for several trips to the bathroom, you might request the cat sleep in your room or that you have three flashlights because one might burn out. When you are sad, you might not be able to handle people being near your stuff. You might get into more fights with your siblings because they usually make you happy. Just because you can’t look at someone and tell them, “you hurt my feelings”, doesn’t mean your feelings weren’t hurt. Everybody has feelings. Sadness, happiness, joy, hate, rage, anger, contentment, disappointment, fear, love, worry. Everybody feels them, not everybody can tell you about them.

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4 thoughts on “30 Days with Autism, Day 13

  1. Joan says:

    “Just because your brain won’t let your mouth articulate what your heart is feeling, doesn’t mean you’re not feeling it. It doesn’t mean you feel it any less. It doesn’t necessarily mean that you feel it differently. It means you can’t always communicate it.”
    This is me. And that’s why I write, it’s the only way I can sort through everything. It makes me feel trapped and frustrated to not be able to articulate everything.

    • I know that feeling. If people could ask a question and give me time to write out an answer, I feel like I’d get along with people more. I have a hard time because my tongue is faster than my brain and I end up with my “foot in my mouth”.

  2. gracling says:

    Hi there, this is my first time visiting your blog! Hearing about the way you’ve learnt to understand and connect with K is inspiring. Also, I really appreciated your insight about the separation of feelings, and our ability to communicate them – this is common to all relationships! I work in a high pressure environment, and this reminds me to have more grace and patience in my own interactions with others…especially when I myself am tired and too impatient to take time to listen. People don’t share their feelings sometimes because they just aren’t wired that way, but also because they don’t feel safe, don’t feel welcome, or haven’t been given the opportunity to try and learn how to. I think giving others opportunities to express themselves, be it clumsily or with eloquence, is something I’m going to have to work on. Thank you 🙂

    • I think the biggest thing we don’t give others is time. They need time to gather their thoughts, to find their true feelings, to find a way to express them. We are taught not to respond in anger, but we don’t receive enough time to process the anger and figure out what’s behind it or underneath it or around the corner to the left, ya know? People need time, particularly people with special needs.

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