What We Do

Our goal is to demonstrate that NVLD is a valid and distinct diagnosis. To help accomplish this, The NVLD Project is conducting evidenced-based research with several renowned institutions and experts, including Columbia University Medical Center and Children’s Hospital of Los Angeles. This includes epidemiologic, neuroimaging and MRI studies. Our research examines NVLD symptoms in groups of children in order to see how NVLD presents itself and how its symptoms differ from symptoms of other disorders. We recently finished imaging the brains of children with NVLD, hoping to pinpoint the neurobiological basis of the disability.

Our research initiatives also include a distinct effort to secure inclusion of Non-Verbal Learning Disability into the DSM (Diagnostic and Statistical Manual of Mental Disorders).

Future DSM Inclusion for Non-Verbal Learning Disability

The NVLD Project is funding a project at Columbia University Medical Center’s (CUMC) Department of Child and Adolescent Psychiatry (PI: Prudence Fisher, Ph.D.) to prepare a proposal to include NVLD in the DSM.

In May 2017, The NVLD Project sponsored a consensus meeting at Columbia 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 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.

Participants at the two day conference included CUMC faculty, experts from other academic institutions, and educators from the New York area. Additionally, seven NVLD global experts, Drs. Jessica Broitman, Joseph Casey, Jack M. Davis, Jodene Goldenring Fine, Irene Mammarella, M. Douglas Ris, Margaret Semrud-Clikeman, and members of the NVLD Project’s Board of Directors and Advisory Board were in attendance.

The attendees discussed changing the name to reflect the fact that spatial processing difficulty is what differentiates NVLD from other DSM disorders, and to disconnect it from the term ‘non-verbal,’ which is confusing to those unfamiliar with the disorder as those with the disability are not verbally impaired.

A second consensus meeting was held in October 2018 to finalize the definition and to obtain additional data to support the proposal. Consensus meeting attendees agreed to change the name to Developmental Visual-Spatial Disorder (Nonverbal Learning Disability).

In May 2020, a survey for parents of children with NVLD was released. This survey focused on NVLD symptoms, mental health history, physical health, and input regarding a new name.

Getting NVLD into the DSM is a multi-step process involving expert review and public comment. NVLD experts at Columbia are currently conducting a systematic review of the scientific literature to provide supporting evidence for its inclusion in the DSM. This work is being led by Dr. Fisher, with the support of the NVLD Project. Getting NVLD in the DSM is critically important for several reasons.

A DSM diagnosis is often required to report diagnostic data to interested third parties (including governmental agencies, private insurers, 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 also would provide a common language for mental 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.

A Neuroimaging Study of Children with NVLD

We are conducting a neuroimaging study of children who have been diagnosed with NVLD at Columbia University Medical Center. Neuroimaging research gives us information about the structure, function, and connectivity of the brain’s circuits. Disruption of these circuits can lead to developmental disabilities and neuropsychiatric illness. Our research program aims to understand the disturbances in brain circuits that lead to NVLD.

This study is aimed at determining whether the brains of children with NVLD, relative to healthy children and children with Autism Spectrum Disorder (ASD), have the same features that we are identifying in our samples drawn from the general population. Identifying similar features in their brains would help validate NVLD as a distinct diagnosis, suggesting that it is neurobiologically at one extreme along a continuum of verbal/perceptual reasoning differences found in the general population.

We have completed the scanning portion of the MRI Study, and our researchers are currently analyzing the data and writing papers. 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

Epidemiology

Epidemiologic research studies illnesses in general populations rather than in treatment clinics. In order to define and understand the behaviors associated with NVLD, we are collaborating with epidemiologists at Columbia University Medical Center, the University of Southern California and Children’s Hospital of Los Angeles and other institutions around the world. We are identifying what components of the NVLD diagnosis come together naturally in the general population, rather than only in patients identified in treatment clinics. This will help us understand what the symptoms and signs of NVLD really are.

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

Microanalysis of Face-to-Face Nonverbal Communication

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

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

Diffusion Tensor Imaging

Bradley S. Peterson, MD, is one of only a handful of leading academic psychiatrists in the nation using advanced brain imaging technology to conduct comprehensive research into the causes and origins of developmental disorders, including non-verbal learning disability. While clinicians acknowledge NVLD, it has not yet been validated as a diagnosis. Dr. Peterson and his team of researchers at CHLA are conducting work 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.

Dr. Peterson is working to validate NVLD by demonstrating that the discrepancies between verbal IQ and performance IQ scores—the core measurable feature of NVLD—have biological root causes in the brain. His latest research attempts to show this use diffusion tensor imaging (DTI).

“We have very strong findings that relate the DTI measures and white matter in the brain to the measure of NVLD that we are using, which is the verbal IQ and performance IQ split,” says Dr. Peterson. “The findings are very convincing and very exciting.”

Philanthropy, generously provided by The NVLD Project and the Laura Lemle Family Foundation, is funding this work and will help to replicate the findings from this study using a second, independent DTI data set. This strategy has proven successful for Dr. Peterson in the past; he used the same method in earlier research, which related brain structure to discrepancies between verbal IQ and performance IQ scores and was published in the Journal of Neuroscience. This is just one important step among many on the path his laboratory is pursuing to validate NVLD as a distinct diagnosis.

Brooklyn Heights Montessori School

The NVLD Project offered a series of workshops at the New York based Brooklyn Heights Montessori School (BHMS). The 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. Additionally, Dr. Amy Margolis (clinician and researcher) and Amy Levine (educator and administrator at a school for students with learning disabilities) conducted classroom observations and then spoke with faculty about the behaviors and interactions they saw. 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 for Middle and Upper school student life teachers at the Ethical Culture Fieldston School, a progressive, independent, college preparatory school in New York City. The workshops present best practices for improving the social experiences of all middle and high school students. The participants also provide information on the students’ social challenges that can be used to create a school self-assessment to determine the social climate in a school and enhance the social experience of all students. The NVLD Project and the Ethical Culture Fieldston School are proud to be working together to ensure that all students feel safe and comfortable during their middle and high school years.

Mary McDowell Friends School (MMFS)

The NVLD Project has offered staff development workshops at the Mary McDowell Friends School (MMFS), a Quaker school for students with learning disabilities. These workshops presented methods for differentiating instruction for all students based on their neurocognitive profiles. Further workshops focused specifically on NVLD and how to support the academic and social challenges students face in school. 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 attendant to NVLD. They used the workshop time to collaborate with faculty and brainstorm techniques to try and address challenging classroom situations.

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

Dr. Amy Margolis and Amy Levine are conducting workshops on helping students with NVLD navigate the academic and social challenges they face in school. Dr. Amy Margolis and Amy Levine will present methods for supporting and remediating social problems in the school environment and for differentiating instruction based on students’ neurocognitive profiles. These workshops will be presented to clinical faculty of the School Based Health Centers serving middle and high school students at GW Educational Campus, I.S. 143/ WHEELS, 52 (Inwood Community Campus), IS 164 (Stitt Campus), IS 136 (Percy Sutton Complex), Thurgood Marshall Academy, and the JFK Educational Campus, and to School-Based Mental Health program serving elementary and middle school students at PS 4, PS 46, PS 48, PS 128, PS 513, PS 132, PS 103,PS 145, MS 421, PS 152, PS 173, PS/ IS 187, MS 287, PS 189.

If you would like The NVLD Project Outreach Team to conduct workshops for your school, please email us at info@nvld.org.

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, educational workshops, research and more.

Social Media

The NVLD Project is actively engaged with the social media community on Facebook, Twitter, Instagram, Pinterest, LinkedIn and YouTube. We use these platforms to share articles, blog posts, photos, videos and other resources that we believe the community will find helpful when they are searching for information about Non-Verbal Learning Disability. Through our social media outreach efforts, we hope to spread awareness and build support for both those with NVLD and their families and friends. Please read our Social Media Community Guidelines for any questions or concerns.

Project Social Ambassadors

In April of 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 own social networks to spread awareness and they 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: What is an Ambassador?, Meet our Ambassadors, Apply to be an Ambassador.

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. In 2018, we attended the LDA’s 55th Annual International Conference in Atlanta, Georgia and the LDA New Jersey’s Life After High School Transition Conference & Resource Expo in Ewing, New Jersey.

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.