What We Do

The NVLD Project is funding research at Columbia University Irving Medical Center’s (CUIMC) Department of Child and Adolescent Psychiatry, the aim of which is to have DVSD/NVLD included in future versions of the DSM (Diagnostic and Statistical Manual of Mental Disorders) system.

Project for Inclusion of Non-Verbal Learning Disability in the DSM (Diagnostic and Statistical Manual of Mental Disorder) System – Current Status

In May 2022, Drs. Prudence Fisher, Amy Margolis, and Amie Wolf, researchers at Columbia University Irving Medical Center, along with Mark Riddle, MD, Professor of Psychiatry and Pediatrics at Johns Hopkins University School of Medicine, and Chair of the Scientific Council of The NVLD Project, submitted a proposal to the American Psychiatric Association’s DSM Steering Committee to include NVLD in future versions of the DSM diagnostic system. The proposal included a DSM-style, behavioral criteria set which was formulated with input from experts in NVLD, learning disabilities, neurodevelopmental disorders and child nosology. In addition, the name was changed to Developmental Visual-Spatial Disorder (Non-Verbal Learning Disability – DVSD/NVLD) for two reasons. First, it was noted that “Nonverbal” is often confused with “not speaking.” Second, the new name differentiates it from current DSM learning disorders, which are defined by impairment in specific academic skills because DVSD/NVLD, like ADHD and language disorders, affects many life areas, not just academics. A paper describing the developmental process is currently under review at the Journal of the American Academy of Child and Adolescent Psychiatry, and should be published in 2025.

The DSM Committee was concerned that there was, as yet, no data on the performance and utility of this newly developed criteria set and requested such data before it could be considered. To address their concern, the team undertook a “vignette” study in which clinicians who evaluate and treat youth were asked to consider carefully constructed vignettes to see whether they could apply the criteria as intended, as well as give feedback on the criteria’s clarity, utility and fit. In addition, they obtained feedback from clinicians and attendees at a workshop the team gave at the annual meeting of the American Academy of Child and Adolescent Psychiatry (in October 2023) and from other child psychiatry faculty via smaller meetings. All of this led the team to consider how the criteria might be further improved and they revised the criteria set. The final revision of the criteria includes more concrete examples of the types of difficulties that individuals with DVSD/NVLD might experience and will be tested in a small field trial that will commence data collection in the first quarter of 2025.

Background and Explanation

Having DVSD/NVLD included as a diagnosis the DSM system is critically important for several reasons and is a multi-step process involving expert review and public comment.

A DSM diagnosis is often required to report diagnostic data to interested third parties (including governmental agencies, private insurers, and education systems and programs) for purposes of reimbursement and for determining eligibility for and financing of services. Without its inclusion, access to psychological treatment and educational interventions and accommodations might be blocked.

DSM inclusion would also provide a common language for mental health professionals and others serving NVLD children and is often used as an educational tool or required text in many training programs and graduate schools to train professionals on how to recognize common disorders and problems. Inclusion of NVLD in the DSM, giving it a “diagnostic home,” would help in better recognition of children who have this condition and how they differ from children who have more specific academic problems.

Inclusion of NVLD in the DSM would serve a heuristic purpose by stimulating research in this area as it would require a clear definition of what NVLD is. In order to research a condition – its risk factors, causes, and outcomes – it is important to clearly define what it is (and what it is not). Thus research on interventions, how to best define it, and differentiating it as a unique condition would be stimulated by the inclusion of NVLD in the DSM.

The NVLD Project sponsored two consensus meetings at Columbia University with the goal of arriving at a proposed standard definition of NVLD, in DSM format, that would be acceptable to the field, based upon currently available research data. The consensus meeting brought together global leaders in the field for the first time ever to agree on a standard definition for NVLD. Prior to the conference, many experts in the field held varied opinions on the precise diagnosis of NVLD.

The attendees agreed to change the name to Developmental Visual-Spatial Disorder to reflect the fact that difficulty processing and integrating visual-spatial information differentiates NVLD from other DSM disorders.

Our goal is to demonstrate that DVSD/NVLD is a valid and clinically distinct diagnosis and identify targets for treatment to improve the lives of people with NVLD. To help accomplish this, The NVLD Project is funding evidenced-based research at several renowned institutions and experts, including Columbia University Medical Center and Child Mind Institute. This includes epidemiologic, neuroimaging, and neuropsychological studies, which examine how DVSD/NVLD presents itself and how its symptoms differ from symptoms of other disorders.

A Neuroimaging Study of Children with NVLD

Under the direction of Dr. Amy Margolis, principal investigator at Columbia University (2013-2024) and The Ohio State University (2024-present), we conducted a neuroimaging study of children who have been diagnosed with NVLD. Neuroimaging research provides information about the structure, function, and connectivity of circuits in the brain. Disruptions in these circuits can lead to developmental disabilities and neuropsychiatric illness. Our research program aims to understand in-brain circuits that lead to or accompany NVLD.

One of our studies was aimed at determining whether the social problems experienced by children with NVLD differ from those observed in children with Autism Spectrum Disorder (ASD). We found that children with NVLD and ASD experience similar degrees of social problems as reported by their parents, but that these problems derive from distinct aberrations in the neural circuitry underlying social functioning. In other words, although both groups of children have social problems they are underpinned by different brain based problems. This work is published HERE.

Identifying unique features in their brains that are linked with features of NVLD would help validate NVLD as a clinically distinct diagnosis, suggesting that it is neurobiologically at one extreme along a continuum of verbal/perceptual reasoning differences found in the general population.This work is published HERE.

In another study, we reported that the neural circuit that supports visual-spatial processing is altered in youth with NVLD, relative to youth with reading disorder or typically developing youth. This study identifies a problem in an underlying circuit that is crucial for visual-spatial functioning and that is not functioning the same in youth with NVLD as typically developing youth or those with reading problems. Further, dysfunction in the circuit correlated with visual-spatial problems. Thus we identified a core underlying brain feature of NVLD. This work is published HERE.

In a third study, we reported that children with NVLD had smaller hippocampal volumes than typically developing youth. The hippocampus is important for visual-spatial reasoning, social functioning, and math, all reported problems in NVLD.  Relative to typically developing children, those with NVLD showed significant reductions in left hippocampal volume and greater hippocampal-cerebellar connectivity. In children with NVLD, reduced hippocampal volume was associated with worse mathematical problem solving. This study can be found HERE.

In a fourth study, we examined cerebellar structure in youth with NVLD, as it is thought to contribute to social cognition. Children with NVLD showed altered white matter microstructure that was associated with social impairment as reported by parents. Our study provides evidence that the cerebellum contributes to both social cognition and the pathophysiology of NVLD.

Epidemiology

Epidemiologic research studies illnesses in general populations rather than in treatment clinics. Under the direction of Dr. Amy Margolis at Columbia University Medical Center, we helped support the first ever prevalence estimate of NVLD in the general population. Bringing together a team of psychiatrists and researchers from the Child Mind Institute, Nathan Kline Institute, and University of Toronto, Dr. Margolis estimated the prevalence of NVLD to be approximately 3 percent in North America. (Published HERE) In further work, we are studying how components of the NVLD diagnosis co-occur in the general population, rather than only in patients identified in treatment clinics to help us understand how NVLD develops.

Mouse Model Study

Children with NVLD experience deficits in a type of memory called working memory. Dr. Alex Dranovsky’s laboratory at Columbia University used a mouse model to unravel a brain circuit mechanism, which causes lifelong working memory deficits in animals exposed to early life stress. The investigators hope to study how targeting this mechanism with known medications and with newly developed ones, can reverse working memory deficits in their mouse model. By combining behavioral, pharmacologic, and state of the art circuit and molecular studies, the scientists are making unprecedented advances in understanding the mechanisms of cognitive dysfunction associated with NVLD. Drs. Dranovsky and Amy Margolis hope to team up for testing if the newly discovered treatments can be used to improve functional impairments related to NVLD.

Microanalysis of Face-to-Face Nonverbal Communication

This study examined the development of infant communication through facial expression and eye gaze at four months using second-to-second lag weights (a statistical method in our laboratory) to determine if individual differences in these abilities predicted attachment or joint attention (as measured by social engagement) at one year. These outcome measures allowed us to differentiate between infants who may develop future autistic spectrum disorders rather than NVLD.

Specifically, we hypothesized that a group of infants exist who have aberrations in lag weights in gaze and face tracking, and that these differences will differentiate babies at one year who have insecure attachment but not problems in social engagement. We hypothesized that these infants may later develop NVLD. The potential autism spectrum infants are more likely to have deficits in social engagement whereas the potential NVLD infants will demonstrate anxiety and insecure attachment.

Brain Structure and Visual-Spatial Deficits

Bradley S. Peterson, MD, and his team of researchers at Children’s Hospital of Los Angeles use advanced brain imaging technology to conduct comprehensive research into the causes and origins of developmental disorders, including Non-Verbal Learning Disability. The goal is to validate NVLD by demonstrating that it has biological underpinnings, one of the most powerful methods of scientific validation. This will ultimately help children receive a definitive and timely diagnosis, early intervention and targeted ongoing treatment.

By using diffusion tensor imaging (DTI), Dr. Peterson hopes to show that the discrepancies between verbal IQ and performance IQ scores – the core measurable feature of NVLD – have biological root causes in the brain.

Philanthropy, generously provided by The NVLD Project and the Laura Lemle Family Foundation, funded a study aimed at understanding how brain structure changes as the discrepancy between verbal and visual spatial abilities widens. This work was published in the Journal of Neuroscience and was Dr. Margolis’ first neuroimaging study aimed at understanding one aspect of NVLD. This paper was the first to identify a network in the brain that underlies these discrepancies which are found in a number of psychiatric and genetic disorders. In a second related paper, she and her team showed that this discrepancy is also related to changes in brain function during tasks that are typically challenging for people with NVLD.

If you are interested in participating in future research studies, please sign up here. If you have any further questions, you can contact us at info@nvld.org.

Our research has and will continue to help us better understand how the brains of children with NVLD differ from those of other children.

In 2024, The Lemle Clinic at Ferkauf Graduate School of Psychology at Yeshiva University opened and began accepting and working with patients. The clinic will allow Ferkauf graduate students to gain insight into treating individuals with NVLD and become the next generation of mental health and education professionals who are adequately informed about the disorder to provide the best care possible.

The Lemle Clinic

The Lemle Clinic is the first clinic of its kind, providing services to individuals with Non-Verbal Learning Disability. The clinic offers a variety of assessment and treatment options for individuals and their families, for whom quality care options are limited.

Assessment and treatment are enhanced by training graduate student clinicians in an NVLD-focused course, in which they are taught and supervised by experts in the field. The clinic’s main goal is to be a center for promoting awareness about NVLD and bringing compassionate and innovative care to those in need.

Past Educational Workshops

Brooklyn Heights Montessori School

The NVLD Project offered a series of workshops at the New York based Brooklyn Heights Montessori School (BHMS). BHMS faculty members were provided information about a range of learning disabilities and how unique learning profiles present a variety of social challenges for children. Dr. Amy Margolis (clinician and researcher) and Amy Levine (educator and administrator at a school for students with learning disabilities) conducted classroom observations and spoke with faculty about the behaviors and interactions they observed. They provided expert insight into what might be causing behavioral issues and offered helpful techniques to best address challenging classroom situations.

Ethical Culture Fieldston School

The NVLD Project offered a series of workshops about best practices for improving the social experiences for middle and high school students at the Ethical Culture Fieldston School, a preparatory school in New York City. Teachers also provided examples of students’ social challenges and created a school self-assessment to determine the social climate and enhance the social experience of all students. The goal of this work was to ensure that all students felt safe and comfortable during their middle and high school years.

Mary McDowell Friends School (MMFS)

The NVLD Project offered staff development workshops at the Mary McDowell Friends School (MMFS), a Quaker school for students with learning disabilities. During these workshops, methods for differentiating instruction for all students based on their neurocognitive profiles were introduced, with a focus on NVLD and how to support the academic and social challenges students face. Dr. Amy Margolis and Amy Levine worked with speech language therapists at the school to provide inservice training for faculty on factors underlying behavioral and academic issues related to NVLD.

School-Based Mental Health and School Based Health Centers at Columbia University Medical Center

Dr. Amy Margolis and Amy Levine presented methods for supporting and remediating social problems in the school environment and for differentiating instruction based on students’ neurocognitive profiles. These workshops were presented to clinical faculty of the School Based Health Centers serving middle and high school students throughout New York City.

The NVLD Project is committed to helping those with NVLD in order to bring about positive change in their lives and greater acceptance by society. We do this through several initiatives, including awareness campaigns, ongoing communications efforts, special events, social media, education, research and more.

Social Media

The NVLD Project is actively engaged with the social media community on Facebook, Instagram, YouTube, LinkedIn and X/Twitter. On our social media channels, you will find articles, blog posts, photos, videos and other resources we believe the community will find helpful in their search for information about Non-Verbal Learning Disability. Through our social media outreach efforts, we hope to spread awareness and build support for those with NVLD and their families and friends. Please read our Social Media Community Guidelines for any questions or concerns.

Project Social Ambassadors

In 2018, we launched our Project Social Ambassador program for young adults with Non-Verbal Learning Disability. The NVLD Project Social Ambassadors are those who share The NVLD Project’s desire to raise awareness, build support and create helpful solutions for those with Non-Verbal Learning Disability. Ambassadors utilize their social networks to spread awareness and are passionate about our cause. Ambassadors are champions in telling both their own story and our story through blog posts, video clips, social media posts and word-of-mouth. Learn more about our program here.

Conferences and Workshops

We attend conferences both locally and nationally to promote The NVLD Project and to build awareness and raise support for Non-Verbal Learning Disability. If you would like to invite The NVLD Project to attend your event, please email us at info@nvld.org with details for consideration.

Dr. Amy Margolis presented at The Child Mind Institute Visiting Professor Lecture Series about “What Is Nonverbal Learning Disorder? Evidence of a Discrete Clinical Entity.”

Community Events

The NLVD Project attends community events, especially those related to learning disabilities and differences. This includes workshops, presentations, book signings, and fundraisers.