"And all that heard him were astonished at his understanding and answers."
Luke 2:47

Understanding Verses Actions

Many individuals with cerebral palsy, a label of intellectually disabled, autism, and related conditions experiences a disconnection between their understanding and action (mind vs. body). They may understand what you say, but then their actions might not show it. In the following short clip, Trent, who is nonverbal, discusses this challenge:

'Equilibrium' is a term used to indicate a balance between the cognitive (what one understands), motor (one's behaviors or actions) and emotions (what one feels). A balanced equilibrium will cause a person to act as expected. But an imbalanced equilibrium may cause one to act unexpectedly even if the individual understands.1,2
Apraxia and dyspraxia are other terms used to indicate an individual has the intention to talk or move, but struggles to coordinate and sequence movements in order to produce a sound or actions, or to make the correct word combinations. Some of the disconnection between understanding and action can be due to involuntary movements or increased muscle tone (hypertonia), such as in some cases of cerebral palsy.3

Here is an activity you can try to help you understand how this could feel:

We can all experience at some level, a mind and body disconnect! Imagine living with that everyday, every second, and throughout your whole body!
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Below a nonverbal individual, Adam, shows you him experiencing this in real life. He tries to aim at the object I ask him too. Even though he knows what I said, as demonstrated by correctly labeling them, he struggles to point, then points to the incorrect object. With training, he (and Trent) have learned to aim correctly to choose or spell, when the choices or letterboard are placed where it is most comfortable.4 Still, he struggles to point to objects and choices in everyday life such as when objects are placed on a table: 

The same challenge happens with speech. Intentional pointing is a shorter pathway in the brain than intentionally producing speech.5 Also, you can training pointing where as speech you can't physically train the voice box to move as needed. This is why pointing to options (as taught on this website) can be more accurate than speech.6

Ideas to Help Them Feel and Be Understood:

1-Assume an individual is trying their best. Treat them respectfully and help them gain independent skills by modeling and then letting them do as much as they can themselves.

2-Error on the side of believing they understand you and are having a challenge coordinating their body verses treating them like they don't understand. (In few cases will you hurt them if they don't understand. For example, say you tell them something you did over the weekend to build a relationship with them and they don't understand--no harm done. But say, you ignore them and only talk in short phrases or baby talk and they do understand--then the individual feels belittled and humiliated. There is research using brain scanning (EEGs) on nonverbal autistics, completely immobile/nonverbal patients that seemed to be in a vegetative state, Traumatic Brain Injured, and other nonverbal individuals which show that many understand as "typical" people do.7,8,9)

​​3-Reasoning/understanding is different than speech and motor skills. Some can say some words and have good motor skills, but they are not always connected to reasoning and understanding in the brain. 10
The place in the brain where speech is produced is a different spot from where speech is understood.11
Don't immediately assume someone doesn't know if they blurt out the last thing you say or do the incorrect action from what was requested. (See the video below of Liam who explains this.)

4-Think of how the Savior would treat them and how you would want to be treated. Be respectful both to the individuals and to the parents and their feelings.

5- Remember all of us raise or low to expectation. Belief and respect will typically bring a lot better results than doing neither. 
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6-Be patient with yourself and others around you. If this thought process of belief is unfamiliar to you or you find it difficult to believe that the person with the disability in front of you is capable of understanding, be patient with the learning process. Be understanding of and respectful towards parents or others who may find this hard to believe if you find it easy to believe the nonverbal/limited verbal "are in there."

Q&A: What can you tell us about the challenge of getting your actions to match with what you want to say or understand?

"I AM UMBERTO. I HAVE SEVERE AUTISM. I UNDERSTAND REALLY EVERYTHING JUST LIKE NEURO-TYPICAL PEOPLE, BUT I HAVE GOT ISSUES GETTING MY REAL (intentional-how he wants to move) MOVEMENTS CONTROLLED, THAT NOBODY SEES. IT IS TOO HARD TO MOVE APPROPRIATELY. I AM A CHILD OF THE ALMIGHTY LOVING GOD."
-Umberto, Age 17, Alabama (Nonverbal)

I AM NOT SURE HOW TO DESCRIBE IT. I GET STUCK. MY MOOD GETS STUCK ON MY FACE. IT WON’T STOP NICELY. MY MOM HELPS ME STOP BY TICKLING ME. THEN I CAN SMILE. SOMETIMES MY BODY OBEYS ME. SOMETIMES MY BODY DOESN’T. FOR EXAMPLE, I MIGHT WANT TO SAY ‘I LOVE LEARNING!’ INSTEAD, NOTHING COMES OUT, OR OUT COMES SOME STRANGE COMMENT LIKE, ‘HI LENAE, IS THAT YOUR RENTAL CAR?’ I CAN’T STOP THE COMMENT—IT JUST POURS OUT LIKE A FAUCET. I AM NOT SILLY, I JUST CAN’T STOP THE STREAM OF VOICE COMING OUT. I TRY, BUT EVERYTIME IT COMES IT COMES. I CAN’T SAY WHAT I WANT USUALLY.  I ACT LIKE I AM THREE OR FOUR AND I AM TEN YEARS OLD. I UNDERSTAND, BUT I CAN’T SHOW IT WELL. I TRY TO HAVE A QUIET VOICE, BUT IT IS LOUD. FOR MOST OF THE TIME, MY THOUGHTS DON’T COME OUT. I JUST STARE WITH A GRIN OR BLANK FACE WHEN ASKED A QUESTION. I TRY TO TALK, BUT WORDS DON’T COME. I HATE IT—BUT THIS IS LIFE. AT LEAST I CAN PLAY, BUT I AM NOT SILLY AS I ACT."
​-Liam, Age 10, Utah (unreliable/limited speech)

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References:

1-Piaget, J., Inhelder, B. (1972). The Psychology of the Child. (H. Weaver, Trans) New York, NY: Basic Books. (Original work published 1966)
2-Mukhopadhyay, S. (2008). Understanding Autism Through Rapid Prompting Method. (Pg. 33-38) Denver: Outskirts Press, Inc.
3-Beukelman, D.R., Mirenda, P. (2005). Augmentative & Alternative Communication (Pg. 236, 249). Baltimore: Paul H. Brooks Publishing
4-Mukhopadhyay, S. (2008). Understanding Autism Through Rapid Prompting Method. (Pg. 187-188) Denver: Outskirts Press, Inc.
5-Mukhopadhyay, S. (2018, February) Introductory Course to Rapid Prompting Method. Presentation at the Introductory course.
6-Mukhopadhyay, S. (2018, February) Introductory Course to Rapid Prompting Method. Presentation at the Introductory course.
7-Connolly, J.F. (Retrieved 2019, January) Listening to the Brain's Voice when Speech is Lost. Retrieved from https://youtu.be/C_y6WANTdCc 
8-McMaster University. (Retrieved 2019, January) Autism Speaks' High Risk, High Impact Initiative, Proof of Principle investigation. Retrieved from https://www.humanities.mcmaster.ca/~lmblab/current_research.html?fbclid=IwAR0i7oe2c_lbcIDGV4g0aSfZQouvxPVDyav-Rj1NZEy_d0VJ9wkdjl85yO0 
9-Autism Speaks Official Blog (May 14, 2011) Nonverbal Autism Researched at IMFAR. Retrieved from https://autismspeaksblog.wordpress.com/2011/05/14/non-verbal-research-highlighted-imfar/?fbclid=IwAR3UzJxv6g8u_HOO887C-MsnrQCnBNz42Xf3L8ATYhNbvM580Npu_oAa9eQ
10-Mukhopadhyay, S. (2016). Developing Expressive Language in Verbal Students with Autism Using Rapid Prompting Method. (pg. 56-60). Denver: Outskirts Press. Inc.
11-Beukelman, D.R., Mirenda, P. (2005). Augmentative & Alternative Communication (Pg. 468). Baltimore: Paul H. Brooks Publishing