I am in an unfamiliar place.

I do not speak the language, nor know the local customs.

I do not feel well.

I approach a woman nearby.

“Excuse me, please,” I say. “I don’t mean to bother you, but I have a stomach ache. Can you help me?”

She puts her finger to her lips and shakes her head. I try to figure out why. Maybe it’s not an okay time to talk. Maybe she understands my words differently than I intend them. Maybe she thinks I just told her to put her head where the sun don’t shine. Whatever the reason, it’s clear that I haven’t communicated the way that I was supposed to.

What I don’t know is that, in this culture, it is not considered acceptable for outsiders to approach villagers. It’s just not done. 

My stomach really hurts. I need help. So I try again.

“Excuse me, ma’am,” I say. “I really need your help.”

She puts her finger to her lips again.

I look for another person who might help. I find a man, I point to my stomach and say, in the only language I have, “My stomach hurts. Can you help?”

He puts his finger to his lips, then turns away.

I am desperate. The pain is getting worse, and now it’s compounded by helplessness, frustration, anger and fear. I grab his arm and turn him toward me. It’s an audacious move, and one outside of my comfort zone, but I need him to understand. I need medicine, a doctor, a place to lie down, a sip of water, SOMETHING. “Please, sir,” I say, “I need your help.”

His wife says, “Ignore her. If she doesn’t get attention, she will learn that this behavior is unacceptable.”

I am now doubled over in pain. I put my hands together as if in prayer. “Please, please help me,” I say. I point to my stomach. I grimace. I make a thumbs down gesture. I pantomime vomiting. I do everything I can think to do to convey that I am in pain.

The husband and wife ignore me. I can’t imagine why.

I am hurting.

I have no other way to convey it.

I don’t know what to do.

I begin to shout. To wave my arms wildly. To kick at the ground.




A woman approaches. She looks down at me, now writhing on the ground. In hopes that she might understand, I repeat my attempts to communicate what’s happening, what I need. The pointing, the gesturing, the pantomiming, the words in a language not spoken here.

“She’s been doing this for a while,” the man says.

“I told him to ignore her,” his wife says. “She needs to know this is not how we act here.”

I remember a movie I saw once. The main character broke his ankle and an ambulance came to bring him to the hospital. While they waited for the ambulance to come, his mom said, “Don’t worry, kiddo, they’ll have you good as new in no time.” Maybe they’ve seen the movie. Maybe they’ll understand that “Don’t worry, kiddo, they’ll have you good as new in no time,” is the line that happens when the ambulance comes.

“Don’t worry, kiddo,” I say, “they’ll have you good as new in no time.”

“That doesn’t even makes sense,” says the husband. “It’s just a line from a movie I saw once.”

The new woman says, “I heard of a method for teaching people like this. We will give her a reward for every minute that she doesn’t try to interact with us. Eventually, she will begin to understand that this isn’t what’s done here and she will stop.”

They show me a chart on which they will put a sticker for each minute that I respect their custom. I want to tell them just where they can stick their stickers. The pain in my stomach is unbearable. I need a doctor, or water, or a place to lie down. Not a sticker. I swat it away.

“I know!” says the woman. “She’s just not motivated enough. We need to figure out what her currency is. Let’s look for clues. What does she love?”

I’m clutching a soft, pink scarf. The one my girls gave to me before I left on the trip. They take it. I am out of energy to fight.

They explain by drawing on the chart that if I can last ten minutes without trying to speak to a villager, I will get to touch my scarf. After ten more, I will get to hold it. After half an hour, I will get to keep it.

The thing that I love most, the one thing that brings me comfort, is only accessible to me if I stop asking for help. I begin to cry. And yell. I am communicating this in every way that I have. Why do they just keep trying to shut down my attempts to make them understand?

I finally stop trying. It’s clear that all that matters to them is the WAY in which I’m trying to communicate, not WHAT I’m trying to communicate.

My stomach hurts so badly I don’t know what to do.

I get my scarf back.

The woman is pleased that her idea worked.

I vomit on her shoes.


Behavior is communication.

(Scripts are communication.)

We cannot extinguish a targeted behavior without offering an alternative method of communicating its underlying message.

Ignoring “behaviors” is ignoring human beings. The message it sends is “I am not listening. I will not listen.”

Teaching by routinely ransoming the things and activities that human beings love in order to get them to do what we want them to do is cruel.

Ignoring “behaviors” is ignoring human beings. The message it sends is “I am not listening. I will not listen.”

We cannot extinguish behavior without offering an alternative method of communicating the underlying message.

(Scripts are communication.)

Behavior is communication.

Communication is everything.

25 thoughts on “communication

  1. Reblogged this on Melissa Fields, Autist and commented:
    This is how it is for me. Autism, which is a neurological disability that one is born with, makes so many things that an NT person takes for granted…..the ability to be able to ignore teasing and tauntings, the ability to cope when there are so many words coming at me, or too much noise, and so on…..difficult if not impossible for those of us who are neurologically wired differently. Please understand this. We lose our words. Other words come out that we don;’t mean to say. We shut down. we meltdown. Please understand. Autism is not a behavior issue, and when we exhibit a behavior it is because we are trying to tell you something that we are unable to communicate to you. Please understand.

  2. Bless you. Thank you, Jess, for the word pictures we can use to explain parts of this incredible ASD journey we are on. Hugs from north Jersey. g

  3. Pingback: » communication

  4. This. This is the most perfect thing I’ve ever read on this topic. With your permission, Jess, I’d like to save it and share it whenever and wherever necessary. So, (sadly), probably everywhere, all of the time.

  5. Pingback: This Is What I’m SAYING! | Ever So Gently

  6. This is why I loathe ABA because too often this is exactly what is done. it was done to my son. The more he acted out the worse they treated him. We are gratful he didn’t end up with PTSD. THANK YOU THANK YOU THANK YOU for writing this. I love it!!!!!!!!!

  7. Thank you. I am in the midst of trying to explain this to my principal whose response to one of my kiddo’s behavior is for a behavorial interventionist (not one affliated with Spectrum needs) to implent a plan. I have tried to get her to understand it is not correcting behavior she needs but what do the behaviors mean. I am printing this out to give to her.
    Thank You

  8. Reblogged this on Trail To A Texas Trial and commented:
    I cried reading this. I wish I could hand it to everyone who has told me “behavior is subjective, it doesn’t count.”
    Why is it, I wonder, that people understand babies’ behaviors and toddlers’ who haven’t learned to speak yet; that there is no question in anyone’s mind when a baby cries one way it means one thing and a scream means something entirely different, and yet, when they become a child old enough to talk but can’t these things become meaningless?? Everyone knows that if a baby is reaching for something or looking at something, they want it and if they don’t get it they will be frustrated and so someone hives it to them if they cry;but, when someone should be able to get it on their own and can’t, somehow that frustration is wrong and their eye gaze and attempts at reaching it mean nothing??

    It is such a battle to try and convince people of this simple premise, one they accept without a thought when it comes to babies and discard without a thought when it comes to older children and adults. And, this, this believing in “behavior is communication” is our window into our children’s world. It’s a heavy responsibility, this constant watching for the merest flicker of “want” or “need” , but it’s there, and I just can’t understand why so many people cannot hear it with their eyes.

  9. This is perfect! As a special ed teacher, a parent, and on the autism spectrum myself… thank you and BLESS YOU! Awesomeness!

  10. Reblogged ( and translated it in french ) here:

    ABA is not the main problem in France, it’s the fact that old views like fridge mothers and infantile psychosis are still pretty much enforced in a lot of places.

    Kids are still routinely hospitalised in psychiatric institution and left there to rot without any help. Only 20% of autistic children have the chance to attend school.

    Parents receive a lot of scorn when they stand against the still too common psychoanalytic dogmas.

    It’s changing slowly.

    But your post was painfully accurate, in the end it stays true… communication is THE key

  11. So when they are cursing you out because they don’t have any other words, what is one supposed to do? I don’t curse them out and they didn’t learn this behavior from me. I get it, they are angry. But at this point so am I. Probably overwhelmed would be a better word. I guess so are they. Have no alternative to offer them. Am i not supposed to address the issue?

    • Of course you address it. This post isn’t about letting hurtful behavior run amok – it’s about the necessity of offering alternative methods of expression. And although I’m sure it’s frustrating and overwhelming to you too, there are a lot of alternatives to cursing at loved ones – from hitting a heavy bag or taking a self imposed time out to squeeze a pillow and get under a weighted blanket before addressing whatever is making them angry (a friend’s autistic daughter who had been lashing out with physical aggression now does this) to alternative language that will express anger without hurting others. It takes time, creativity, and sometimes energy we feel like we just don’t have left to keep at it, but there are alternatives.

  12. And then when you get tough enough to endure your pain, they are miffed that you don’t want to spend time with them.

    I think it’s a really good metaphor.

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