The NVLD Project is dedicated to raising awareness, building support and creating helpful solutions for children, adolescents, and adults with Non-Verbal Learning Disability. This goal is accomplished through a variety of programs.
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.