Laura Lemle watched how some teachers didn’t always understand how to teach her daughter, who has nonverbal learning disability. Some were incredibly empathetic, others were not. Special education schools weren’t the right fit, but neither was mainstream education. She felt her daughter never ultimately got what she needed.
Lemle knew she wanted to do something to help other children like her daughter. She thought somebody had to be working to raise awareness. But it didn’t seem like anyone was. She decided it had to be her.
But now, there’s an unexpected spotlight on nonverbal learning disability, or NVLD. After some on social media fixated on the teenage son of Minnesota Gov. Tim Walz, Gus, who had an emotional reaction as Walz accepted the Democratic nomination for vice president, there’s been heightened awareness of what NVLD is.
The Walz family has previously said that Gus has attention deficit hyperactivity disorder, anxiety disorder, and nonverbal learning disability.
Lemle—the founder of the NVLD Project, a nonprofit that seeks to raise awareness of the condition and pursue formal diagnosis recognition in the Diagnostic and Statistical Manual of Mental Disorders—said the outspokenness of the Walz family has shed a light on NVLD. The DSM is used by mental health professionals in the United States for standard classifications of mental disorders.
“It’s really been under the radar, and it’s a problem for this population,” she said. “Getting it into the DSM is, to me, the beginning, because a lot more work needs to be done.”
Without recognition in the DSM, NVLD is not covered by the Individuals with Disabilities Education Act—meaning students can’t get accommodations if they don’t have another diagnosable disability.
When it comes to learning disabilities, there’s a lack of research for disabilities outside of dyslexia, said Monica McHale-Small, the director of education for the Learning Disabilities of America Association.
“A lot of times we talk about it as the most common learning disability is dyslexia, but we don’t have good data to support that it is indeed. It’s the one we have the most information about, the most research on,” McHale-Small said. “We need a lot more research specific to learning disabilities and how they manifest in the classroom, and in life.”
There is a push for more visibility and research—and eventual inclusion in the DSM. Here are some common questions, answered.
What is nonverbal learning disability?
NVLD refers to a condition that a group of kids or adults have, which includes difficulty with visual and spatial reasoning, and problem-solving, leading to functional impairments in their everyday life, said Amy Margolis, a professor of pediatric neuropsychiatry at Columbia University. The NVLD Project funds Margolis’s research.
A common misconception, because it is called nonverbal learning disability, is that people with NVLD have problems with language and speech, or that it is an autism spectrum disorder. Researchers havestudied how the disorders are similar and how they’re different. You could have both, Margolis said, but they’re distinct.
In research a few years ago, Margolis asked parents with kids who have NVLD and those with autism spectrum disorder to rate their children on social functioning. When the researchers looked at the children’s brain functions, the social functioning issues were coming from “different problems in a circuit that underlies social functioning,” said Margolis. The fancy term is different pathophysiology, she said. But basically, the brain basis is different.
What are common signs of NVLD that educators might see in the classroom?
A classic example is difficulty with math, said Margolis, either in understanding numerosity and the concepts behind math, or the mechanics of learning the procedures for things to line up on the page—for instance, if you’re writing an addition problem, and the columns don’t align.
As students with NVLD get older, they might struggle with certain kinds of math that require visual or spatial problem-solving, like geometry, or in science where they may have to read and draw graphs.
Students who learned to read easily in 1st and 2nd grade may now have difficulty reading to learn—they could struggle to grasp the main idea or big picture of what they’ve read, Margolis said.
In gym class, children with NVLD may run in the wrong direction during a soccer game. They may have trouble packing their backpacks, creating Lego structures, or trouble gauging when it is safe to cross the street.
These are students who, oftentimes, have stronger language-based skills than visual-spatial skills, Margolis said. Giving a student the diagram and helping them label it, rather than drawing it, is one way teachers can create an inclusive space.
“For a lot of kids, copying down the square in the circles is not going to be such a huge effort. But for this kid, it is,” she said. “You want to take away that part of the challenge and let them focus on learning what the shapes represent.”
The NVLD project also devised a toolkit for educators to understand NVLD and how it may appear in class.
These students may also struggle with higher-order comprehension, said McHale-Small, who was an educator for nearly 30 years. Rewording directions or explaining concepts in a different way, are ways to help.
Social skills are also essential for success in and after school, McHale-Small added. It’s important for educators to help facilitate friendships and model working through social conflict, too.
Is there a diagnosis for NVLD?
Because NVLD isn’t in the diagnostic nomenclature, it is hard for students to get diagnosed, Margolis said. Clinicians are forced to classify people based on “downstream problems”-—like if they also meet criteria for ADHD, anxiety, or specific learning disorders in math. This means students often won’t have accommodations specific to NVLD under the IDEA Act.
In research published in 2020, Margolis and her colleagues found that potentially 3 percent of kids in North America meet the criteria for this disorder. A lot of the kids in that sample had other diagnoses, but about 10 percent did not.
“If you extrapolate out, that could mean 300,000 kids who have no access to care because they don’t meet the criteria for some other diagnosis,” she said.
Right now, to get a diagnosis, individuals have to get a neuropsychological assessment, she said. There are efforts to have NVLD included in the DSM as a diagnosis, and recontextualized as developmental visual spatial disorder (DVSD).
“What we’re hoping also by getting into the book is to really enhance access for people,” she said. “We’re recommending that this diagnosis could be made based on interviews, the same way ADHD is made based on interviews, rather than requiring testing.”
Right now, Margolis and colleagues are working to prove that people can use their new definition reliably. Getting into the DSM would not only increase access to health care services, Margolis said, but it would also increase research interest.
“If it’s not covered in the DSM and it’s not recognized, then people aren’t going to study it, because it’s going to be very hard to get research dollars to study it, and why would you want to develop treatments for things nobody can be diagnosed with?” she said.
