A Mother's NVLD Journey

My daughter was diagnosed with nonverbal learning disability (NVLD) when she was just five years old. I had never heard of NVLD and was told by the neuropsychologist who evaluated her that she was like an onion whose layers we had to peel away, leaving me in an abyss of the unknown. It was clear to me that my daughter was different from other kids, and it was most obvious that she was socially different. How she would evolve and develop was a mystery. I had no road map of what she would need.

Because nonverbal learning disability is not in the DSM, my daughter did not receive an optimal education. Schools and educators often did not understand her because NVLD is not recognized as an official diagnosis. This makes it difficult for children with NVLD to receive appropriate accommodations in school and empathic understanding that is critically important to one’s development.

This population often does not read nonverbal social cues accurately. Misreading social cues can be annoying to both adults and children. However, understanding why an individual is behaving in an off-putting way can potentially be used as a teachable moment. Instead, too often, individuals with NVLD are stigmatized and ostracized. Being accepted socially and feeling supported by a community remain among the biggest obstacles.

My daughter’s unwavering determination and courage inspired me to want to do something to help this community. I talked to a lot of people, tried a few things, and then in 2012, I realized the way that I could most effectively help this population was to try to get NVLD recognized as a formal disorder. In 2013, I founded The NVLD Project, a nonprofit organization dedicated to raising awareness, building support, and furthering our understanding of this disability. I want to help others on this journey who might feel isolated and alone because I know the importance of belonging to a community and I know how challenging it can be to find the resources necessary to help your child succeed. I was and am also concerned about the adult community. Children grow up and their disability follows them. Having nonverbal learning disability recognized by the Diagnostic and Statistical Manual Committee (DSM) as a valid disorder will be a game changer.

In a relatively short time, we have made considerable strides. Through our partnership with researchers at Columbia University Medical Center, an application was submitted to the DSM Committee to get NVLD recognized as a formal disorder under the new name Developmental Visual Spatial Disorder. (Research is now being done at Child Mind Institute and Columbia using the new criteria to resubmit the application to the DSM committee at their request.) We funded the first stand-alone clinic for assessment and  treatment of NVLD at Ferkauf Graduate School of Psychology at Yeshiva University, the Lemle Clinic. We are also very excited about our new and very important partnership with Child Mind Institute. They are focusing on NVLD research as well as clinical care and assessment for this population.

I am very pleased and grateful that our organization is working with some of the most prominent experts in the field, including researchers, psychologists, psychiatrists, educators, and their renowned institutions. Thanks to the support of so many individuals and organizations, my passion for providing much needed help and resources to others with NVLD and their families is becoming a reality. While I am extraordinarily proud of what we have accomplished so far, I do realize that in many ways our work has just begun.

Please join me and all of us at The NVLD Project in our critically important work to obtain a valid diagnosis for Nonverbal Learning Disability so that those living with this disability can be better understood, properly treated, socially engaged, and counted in.