What does it mean when a child is diagnosed with Non-Verbal Learning Disability (NVLD)? The NVLD Project, non-profit organization just launched its informative and colorful new website on March 15 ^th to address that very question. (Check out nvld.org)  The symptoms of NVLD include: difficulty  grasping “the big picture” or the main idea in a story, poor handwriting along with  other fine motor skill issues, “spacey” affect,  a lack of meaningful  friendships—despite the desire for them,  trouble dealing with new situations, and struggles with spatial relationships, such as how parts fit together. However, children with NVLD also have strong language skills and a well-developed vocabulary, unlike most kids diagnosed with autism.  Many NVLD kids seem to perform well academically at mainstream schools, especially before abstract thinking kicks in, but struggle socially.

Poorly understood and often confused with autism, The NVLD Project is devoted to raising awareness, building support, and creating helpful solutions for kids, teens and adults with NVLD.  One of the main goals of The NVLD Project is to teach the medical community and educators that NVLD is a distinct diagnosis which deserves inclusion in the DSM. This recognition would enable  families of NVLD kids  to receive insurance coverage for therapy and appropriate educational support—just  the way autism families do.

As the parent of a daughter with autism, I see the glaring need for clarification and understanding of these confusing and misleading diagnostic labels. My daughter Sarah was once diagnosed with NVLD when she was 12. Does that mean she has NVLD and autism— crazy and heartbreaking, no?   Sarah has ALL of the NVLD symptoms listed above EXCEPT for the strong language abilities, but she fits in with her autistic spectrum peers. NVLD kids tend to be more isolated because they can’t fit in with mainstream kids. Yet they don’t feel comfortable with kids on the spectrum either because the ASD kids tend to be lower functioning.  That distinction is not made on the NVLD website, but based on my own informal observation and hearsay. Sarah attended Pace University with the daughter of NVLD’s founder, Laura Lemle, and they were acquaintances.  But while my daughter was in special education schools her whole life, Laura’s daughter graduated from a competitive mainstream private school with high grades.

“The NVLD Project was inspired by my daughter who was diagnosed with NVLD at age 5,” says Lemle. Like Sarah, Lemle’s daughter faced many challenges—albeit some different ones—but both persevered.  If you visit the NVLD Project’s website, you can see the heart-rending video and articulate description of what it feels like to have NVLD, written by a 12 year old. My daughter could never have written a similarly detailed description of what it felt like to be on the autistic spectrum at the same age, and I’m not sure she could do it now.  But none of that matters. What’s important is to help young adults with autism, NVLD and other learning disabilities live more productive lives and be included in mainstream society.

The burden of helping these young adults—regardless of their diagnostic labels—has fallen heavily on their parents.  In my small way, I have tried to encourage families of newly diagnosed kids on the spectrum to persevere and advocate for their kids by writing My Picture Perfect Family – What Happens When One Twin Has Autism. At the same time, I am hoping my memoir about raising Sarah will inspire the mainstream world to stop rejecting her because of her label(s), but recognize and include her as an individual instead.

The NVLD Project is a far broader and more ambitious undertaking than my memoir or any individual book. Founded in 2013, The NVLD Project has been working with some of the most knowledgeable experts in the field, including researchers, psychologists, educators and their renowned institutions, such as Columbia University Medical Center and Children’s Hospital in Los Angeles. Research and brain imaging have been ongoing to identify the neurological basis of NVLD, while educational workshops have been offered at schools like Brooklyn Montessori to help teachers handle challenging NVLD kids by explaining what triggers their behavior problems.

“In just a few short years, we have made considerable strides,” says Lemle.  “While I am extraordinarily proud of what we have accomplished so far, I do realize that in many ways our work has just begun.”   She urges web visitors to join The NVLD Project “to attain a valid diagnosis for NVLD, so that those living with this disability can be better understood, properly treated, socially engaged and ‘counted in.’” I’m in. Are you?