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Over the past four decades, educators, clinicians, and researchers have become increasingly aware that there are children who have no problem with purely verbal activities, and may even be verbally advanced, but who have significant problems academically, especially with mathematical concepts (long division, fractions, grafts, shapes) and in organizing their work. Because, since early on, they have demonstrated good verbal skills (reading, spelling, vocabulary, memorizing facts, expressing their ideas in conversation), no one suspects that these children may have a disability; instead they may be blamed for being uncooperative, viewed as lazy, and fall behind academically.
They can also have significant social problems due to trouble understanding nonverbal communication, judging social situations, and interacting appropriately with their peers. Many have poor gross and fine motor coordination, which can lead them to struggle with simple tasks like using scissors, tying their shoes, riding a bicycle, and to avoid participating in sports or other physical activities, either by choice or because they are left out by their peers. Together these problems can have a devastating impact on a child’s social, academic, and emotional well-being.
The difficulties these individuals face fall into a profile that has been labeled “non-verbal learning disability,” NVLD, or NLD. NVLD first appeared in the literature in the 1960s and was given its name to distinguish it from the verbal learning disabilities (dyslexia) that were receiving attention at that time. A diagnosis of NVLD is typically made by a neuropsychologist after extensive testing, and given to individuals who have average or above-average verbal intelligence or abilities, while having persistent and substantial weakness in their non-verbal abilities, in particular their visual-spatial abilities, which in turn cause them to be impaired in academic or other life domains.
Despite increased awareness of NVLD in the educational and child mental health fields, there are currently no formal, “official” diagnostic criteria for NVLD, and NVLD is not included as a mental disorder in the Diagnostic and Statistical Manual of Mental Disorders, DSM-5.
A major goal of the NLVD Project is to raise awareness of the disability and, as part of this, to have the diagnosis included in future editions of the DSM. Having NVLD included is important for several reasons.
First, including the disorder in the DSM requires a standard definition for the disorder thus improving communication and identification (and understanding) of the condition. This will help to ensure that children with NVLD are correctly identified and not misdiagnosed with another disorder, which can result in children not receiving appropriate services. As the DSM has increasingly been used as an educational tool, and is a required text in many graduate and undergraduate mental health courses in social work, nursing counseling, and psychology, this would assure that this will be included in the training of new professionals.
It should be noted that many young people with NVLD are currently often diagnosed within the DSM system; indeed, they often receive several DSM diagnoses—specific learning disability, ADHD, developmental coordination disorder, social phobia, autism spectrum disorder, or some variation of these (ADHD not elsewhere classified); having NVLD in the DSM could provide a more parsimonious and integrative approach for considering their pattern of difficulties. In addition, these other diagnoses do not capture what is increasingly being thought of as the core deficit in NVLD: the weakness in visual-spatial abilities.
Second, having NVLD in the DSM-5 provides a common definition for researchers to use to study the prevalence of NVLD (currently the prevalence is unknown), determine how NVLD impacts social, academic, and emotional development across the lifespan, and develop and evaluate interventions to help individuals with NVLD. As there is not a standard, agreed-upon definition of NVLD in the field, researchers define the disorder differently, making it difficult to build knowledge.
Finally, inclusion in the DSM may improve access to treatment. DSM diagnoses are used to report diagnostic data to interested third parties (including governmental agencies and private insurers) for purposes of reimbursement and for determining eligibility for and financing of services. Currently, many people with NVLD are not receiving appropriate care and interventions and their treatment is not covered by health insurance.
Adding a new diagnosis to the DSM is no easy task: it is a multi-step, iterative process involving expert review and public comment. It starts with the preparation of a detailed proposal for consideration by the DSM Steering Committee. The necessary first step is to clearly specify the criteria for assigning the disorder, in DSM style. The proposal must then justify the addition of the disorder by laying out the supporting information (evidence) for each of the following:
- The condition meets the DSM definition of mental disorder.
- Clinical utility and diagnostic criteria can be reliably used by clinicians.
- There is substantial clinical value in adding the disorder (that is it will help people that are in need and are currently not being identified or properly treated).
- Addition of the disorder will not cause harm (a positive benefit-to-harm ratio).
- The disorder has validity (antecedent, concurrent, and predictive).
- The disorder is distinct from other DSM diagnoses (is not better conceptualized as a subtype of an existing disorder).
The NVLD Project is funding a project in the Division of Child and Adolescent Psychiatry at Columbia University Medical Center (CUMC) (principal investigator Prudence Fisher, Ph.D.) which focuses on preparing this proposal. We’ve undertaken a systematic review of the existing scientific literature on NLVD, using various scientific databases and sorted through over 3,500 articles to examine the diagnostic criteria that has been developed and used in NVLD research thus far, as well as an assessment of the scientific rigor of this work. This review will be useful in providing some of the necessary evidence for the proposal (and will be submitted for publication).
The second step was to come up with a standard definition for the diagnosis of NVLD that clinicians can understand and apply reliably to the individuals they see. While the review was helpful, there was no consensus definition. As it is important that the definition proposed for the DSM be acceptable to those in the NVLD field, The NVLD Project sponsored a working conference at Columbia University Medical Center on May 11 and 12 of 2017, with the purpose of arriving at a consensus diagnosis for NVLD. Before considering the criteria set, the attendees discussed changing the name to “spatial processing disorder (non-verbal learning disability)” to reflect that spatial processing difficulty is what differentiates NVLD from other overlapping 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). Participants also briefly discussed the research data currently available for inclusion in the proposal to justify NVLD’s addition to the DSM and strategies for obtaining additional data. By the end of the second day a “working definition” for the disorder was arrived at. The proceedings of the conference are being prepared for publication.
NVLD experts and many of the other attendees have agreed to continue to serve as an Advisory Group as we continue our work on the DSM proposal. In addition to continued discussion of the name and criteria set, the Advisory Group will brainstorm around strategies for obtaining additional supportive data and materials. Some possibilities include undertaking a follow-up study of children who met the diagnostic criteria for NVLD in the past to shed light on future course and comparing NVLD children with others in special educational settings on accompanying behaviors and symptoms perhaps via a record review and latent class analyses.
NVLD Project Conference participants included: Seven NVLD recognized global experts—Drs. Jessica Broitman, Joseph Casey, Jack M. Davis, Jodene Goldenring Fine, Irene Mammarella, M. Douglas Ris, Margaret Semrud-Clikeman; Columbia Psychiatry faculty and faculty from other academic institutions in New York with expertise in the DSM, Autism, learning disorders, ADHD, NVLD, and child development; educators from schools which serve NVLD students; and members of The NVLD Project’s Board of Directors and Advisory Board.
