Isaiah Grewal was in speech classes by the time he was two. He wasn’t saying the words other kids his age were saying, or responding normally when people spoke to him. When publicly funded speech classes didn’t work, his parents got him into special, private classes. Still, he did not speak.

Isaiah was eventually diagnosed with autism. He turned five, he turned 10, and still he was not speaking.

His parents couldn’t tell from his reactions whether he understood what they were saying. He didn’t nod or mirror them. He’d utter sounds, sometimes loudly, but they didn’t seem to be purposeful.

But every once in a while, something strange would happen, like when he’d use foam letters or fridge magnets to spell things out — words like “contents” and “bonus material” that he’d seen when watching a Baby Einstein DVD. “I just felt there was more cognitive ability in him than was being tapped,” his mother, Melody, says.

But how could she know? She and Isaiah’s father, Christian, felt like they’d tried everything. But then, at age 13, Isaiah started working with a communications therapist who taught the family how to use letter boards. These are large boards with the 26 letters of the alphabet printed on them – large enough that even a person with poor motor control can learn, with enormous effort, to point and spell.

It was challenging. Isaiah didn’t have much control over his arms or hands. It took hundreds of hours of training and practice. But eventually, he began telling his parents what he was thinking. One of the first things he spelled out to them was about food, and specifically about restaurant food: “I want to eat off a menu like a normal teen.”

They were stunned. Their son’s diet had been limited to things like fries and nuggets and chocolate. New foods had always upset him, so they’d stopped pushing him to try. But now, using the letter board, Isaiah told them that he’d been upset because he’d wanted to eat the new foods, but he didn’t have the motor control to do it. The same muscles that made it impossible for him to speak, he told them, made it impossible for him to eat those things.

But he wanted to eat them, he insisted, and he wanted them to help him train to do it. Using the letter board, he gave them advice on how. Push it into my mouth again. Chop it into squares. Say chew, chew, chew in a rhythm. For his 18th birthday, Isaiah celebrated at a fancy restaurant, and ordered lobster mac and cheese, from the menu.

About a third of people born with autism are non-speakers, says Morgan Barense, a neuroscientist in the department of psychology at the University of Toronto. People assume, she says, that if a person can’t speak, they must be intellectually impaired.

Barense believes that many autistic people who don’t speak may be hindered not by problems of intellect but motor control. She thinks they may have a condition called apraxia, which is the inability of the body to carry out the motor commands of the brain, a problem sometimes seen after injuries like stroke or head trauma. “Speech is the finest of the fine motor skills,” says Barense. “Think about how you have to move your tongue and your lips in order to execute a sentence. It’s exquisitely controlled.”

People with apraxia, she says, understand what people want of them, want to do it, are physically capable of doing it, but cannot make themselves do it; for whatever reason, their motor systems can’t execute the signals from their brains.

Some non-speakers who have been able to describe what’s going on inside say it’s like being stuck in the body of a drunk toddler, says Barense. They don’t know why they’re suddenly vocalizing Mickey Mouse or talking about Thomas the Tank Engine or running around frantically. They don’t want to be doing these things, they say, but their bodies are like runaway trains.

This was the case with Isaiah, now 22. Once he was able to communicate using the letter board, and later a keyboard, he started describing his inner life. He liked classical music and jazz, he revealed, but not rock or pop. He wanted his shoes to be red.

In an in-person interview I had with Isaiah, I asked what autism felt like to him. Via keyboard, he answered, “Like swimming underwater 24-7 because everything feels hard to control.” I asked what he and his friends talk about when they get together online. “We mostly trash talk,” he responded. Then, later, after I’d stopped laughing, he said, “We just like to hang out in the same space and eat pizza.”

Isaiah has an undergraduate certificate in professional communications from the Harvard Extension School and currently holds a graduate fellowship through Stony Brook University in New York. But other people like him, who haven’t had the benefit of receiving training in how to spell out their thoughts, are being deprived of communication, education and human connection, says Barense: “They’re missing out on that because we are conflating a lack of speech with a lack of intelligence.”

Currently, there are no reliable ways to estimate comprehension, language ability and intellect that don’t require motor output. Vocal speech, sign language, handwriting, typing, pointing — they all involve complex movements that some people simply may not have available to them, says Barense. So, she wants to use neuroimaging to better understand the minds and brains of non-speaking people.

Neuroscientists are well aware that different tasks are handled by different brain regions. With language, one region is believed to specialize in speech production while another is responsible for speech comprehension. Primary motor control is handled elsewhere.

But until now, no one has peered inside the brain of a non-speaking autistic person while they are engaged in cognitively demanding tasks. Barense has so far completed a baseline magnetic resonance imaging (MRI) scan of the structure of Isaiah’s brain. Next will come scans of the brain in the process of completing intellectual tasks (known as “functional” MRI, or fMRI).

One of the challenges is that MRI scanning requires a subject to be still. And many autistic people have a lot of uncontrolled movements. Isaiah was able to be still for the 40 minutes of the scan only because of his years of motor training, says Barense. But that may not be so doable for others she’d like to study, so she has applied for a grant to find ways for software to adjust for a subject’s movements.

Barense plans to start with a basic question: what does language look like in someone who is able to understand but can’t speak? How is language represented in their brains? “In these non-speakers who have gained access to fluent communication,” says Barense, “I have a strong prediction that we will find evidence of intact comprehension. I just don’t see how it could be otherwise.” It is completely plausible for one system to not work, she says, while the others are all completely fine.

Using fMRI, she and her team will look for complex patterns of brain activity that reflect high-level comprehension but do not require motor output. For instance, as a person listens to a complicated story, the researchers can track the signal in their brain as that story is unfolding. When there’s a twist in the plot, or a disruption of the narrative, they can see how the brain signal changes in response.

Barense feels it’s important to really listen to what non-speakers are telling us about their experiences and to allow them to inform the science. She had been planning to use movie clips to test this response to plot change, for instance, but Isaiah pointed out that straight audio would work better: when he’s really interested in something, he told her, he closes his eyes.

Barense is also collaborating with a team from Johns Hopkins University in Baltimore. Together they will use a recently developed neuroimaging technique to study motor activity in the brains of non-speaking autistic people, including Isaiah. This technique, known as high-density diffuse optical tomography, collects data through sensors on a wearable cap in an unconstrained environment. So, researchers will be able to ask subjects to complete specific motor tasks — tapping a finger, using a spoon, or saying a word aloud — while they watch how the brain is working. Neuroscientists already know what neurotypical brains look like doing these things, but what do brains like Isaiah’s look like?

Down the road, her work could lead to changes in how we educate non-speakers or to new ways of communicating. But for now, she’s focused on simply trying to understand brain organization in this important but poorly understood group. “I think that’s the beauty of basic science,” she says. “You do things, and you don’t know where it’s going to go. I don’t know what we’re going to find, but I know that we need to find it.”

To Isaiah, the work feels urgent. He describes finally getting through to his parents as “freedom from prison.” And the most important thing he wanted people to know while he was trapped in that prison? “That I’m in here.”

Talk Therapy

Isaiah Grewal wrote the poem below for a high school English assignment. He says he wanted to convey that non-speaking people have been wrongfully judged for their inability to speak.

It’s time to talk.
Argh.
Sighhh.
I want my mouth to say what I am thinking,
But it rarely does.

The time teacher told me to read the toddler book
When I was ten
Was no fun.
“The elephant is big,” I said in my head
As my eyes read
And my soul dreaded
What would then always happen next:
“Isaiah, read!” teacher said with a smile.
“Isaiah, read!” my maverick mouth repeated
Over the silence of my mind screaming THE ELEPHANT IS BIG!
Each time this happened, smiley teacher would think she was helping me by explaining more.
The next thirty minutes of her showing me various pictures of other big animals, I spent dreaming of my next trip to Disney.
I didn’t want a master class in pronouncing “ele” that lasted another thirty minutes after the first thirty minutes of the big animal pictures.
I knew if I didn’t speak at least one of the words out loud, I would have to endure this hour repeated again next week.
So I tried to channel all my energy into my throat.
And make my tongue turn or twist to get the words right.

Breath in,
Hold breath and open mouth,
Tongue between teeth,
Breath push out

“the”

Breath in,
Hold breath and open mouth,
Tongue between teeth and roll up,
Breath push out

“ele”

Breath in,
Hold breath and open mouth,
Lips tight together and teeth on lower lip,
Breath push out

“phant”

Breath in,
Hold breath and open mouth,
Teeth slightly apart and tongue against lower teeth,
Breath push out and buzz

“is”

Breath in,
Hold breath and open mouth,
Lips together then apart and tongue flick fast,
Breath push out hard

“big.”

“Good job, Isaiah! High five!” smiley teacher said.
She sat closer to me and turned the page of the toddler book,
“Next week we’ll learn how to read this page,” she said as she pointed.
THE MOUSE IS SMALL! I screamed in my head
Watching the book close in her hands strangling my hopes
As she packed her things to go.
Argh.
Sighhh.