07/13/2025
This is an excellent article written by Steven May of The Spellers Community
Two Controllers: Understanding Apraxia and the Brain-Body Disconnect for Parents of Nonspeaking and Unreliably Speaking Autistics
The Two Controllers
Imagine this:
Your child’s body is being controlled by two entirely separate systems—two “controllers.”
The first controller is their true self, THEM. This is who your child really is—the inner intelligence, the emotional being, the compassionate and curious spirit that sees you, understands the world, and is actively trying to connect, continuously. This is the version of your child that you sense in quiet moments when your own mind is clearest,
distracted from the daily grind and open. This IS who they are.
The second controller is the Apraxic Controller—and this is not your child.
It is their nervous system, functioning in a disorganized, disconnected way. It operates their body without their permission. The Apraxic Controller affects everything: movement, speech, facial expression, posture, sounds, responses. It causes the body to act in ways that do not match their inner thoughts or intentions. IT IS NOT THEM!
Spellers across the world—once they gain reliable communication—describe this dynamic again and again:
“My body doesn’t listen to me.”
“I scream when I want to be quiet.”
“It looks like I’m not paying attention, but I hear everything.”
“My face lies.”
“It’s like watching someone else drive my body.”
This is not a behavioral issue. This is not lack of intelligence, nor a lack of desire to connect. This is a neurological movement disorder—apraxia—where the brain’s messages to the body are scrambled, delayed, or blocked entirely. REMEMBER - This is NOT them.
This is why spelling becomes a lifeline. Through the structured support of a spelling board, your child finally gains access to an alternate route—a way to bypass the Apraxic Controller and communicate directly from their true self to you.
As you journey together, you will begin to see it clearly:
Your child is in there. They always were.
But the Apraxic Controller is fighting for control, every step of the way.
Flipping the Lens: From Outside-In to Inside-Out
As parents, carers, and professionals, we are often trained—formally or unconsciously—to look from the outside in.
We interpret behavior. We expect responses. We rely on expressions, gestures, or spoken words to signal engagement, interest, or intelligence.
And when those things aren’t present, we’re taught to assume lack: lack of attention, lack of understanding, lack of readiness. That’s simply 100% not true, it’s the opposite and WE are the error.
Here’s the truth:
These expectations are built on neurotypical standards, not autistic experience.
Presuming competence means changing our lens.
It is the shift from:
“Why are they doing that?”
to
“What are they experiencing moments ago and right now?”
This new lens asks us to:
• See behaviors as adaptive, not disruptive
• Understand that movement and expression may not align with intention
• Regulate ourselves first, before we respond
• Remove or reduce sensory overstimulation in the environment
• Be open to alternative forms of communication that begin with spelling, not speaking
• Replace demand with curiosity, flexibility, and deep trust
When we do this, we stop demanding that our child meet our social norms, and begin the work of meeting them where they are—with clarity, respect, and love.
The Golden Keys to Open Communication
There are three essential elements—call them your golden keys—for supporting your child’s communication journey:
• Presume Competence – Assume that your child is understanding everything, even when their body says otherwise. Hold this belief especially when it’s hardest.
• Belief – Your unwavering belief in your child’s intelligence and capability is not a nicety—it’s a necessity. It is the soil in which open communication grows.
• Love – Love regulates. Love anchors. Love softens frustration, fear, and resistance—yours and theirs. It is the single most powerful tool you carry.
As spelling becomes part of your shared world, expect surprises. Expect resistance. Expect joy. Expect setbacks, and expect miracles.
And always stay watchful and fully aware for the Apraxic Controller—not because your child is broken, but because their Apraxic Controller hijacks their body and works totally against their will.
Your role is not to fix them.
Your role is to see them.
To believe in them.
To walk beside them—no matter how uneven the path.
Step by step, letter by letter, connection by connection…
Communication will open.
And the person you’ve always known was inside will come shining through.
❤️