I was diagnosed with NVLD in sixth grade. It was very hard to understand why I had this disability and what it even was. I had a rough time in high school with bullying, having separate testing locations, and always being pulled from class to be tested by a psychiatrist. I basically had no friends and I was failing terribly in school.
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The NVLD Project is supporting a research study on children with NVLD at Columbia University Medical Center. Our goal is to better understand what makes NVLD a distinct diagnosis. We are trying to learn more about how children with NVLD learn and if there are differences in the way that their brains work. In order to do this, we are having children come spend a day at Columbia University Medical Center. The day consists of spending time doing tasks and an MRI scan.
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Dating can be daunting for anyone, but dating with a Nonverbal Learning Disorder (NVLD) creates a unique set of challenges. People with NVLD have difficulties reading body language, understanding nuances such as sarcasm in communication, and simply managing to transition to new environments. Nevertheless, while the challenges of dating on the Autism Spectrum have received increasing attention, little has been published about NVLD.
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I remember being in elementary school and being taken out of the classroom or arriving early with my mom, who was a teacher at my school, to meet with the school psychologists. At the time I didn’t know that they were test, but they had me do a series of things like drawing, writing, reading, and etc. Now as a 23 year old I understand that they were testing my memory, attention to detail, learning and etc. I then remember my mother trying to explain to my 9 year old self that my brain was a little different, which is why I struggled with math so much.
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My daughter was diagnosed with ADHD at 8 years old as well as a spatial learning disability. I went to many national conferences and read every book I could to try and understand ADHD and learn how to be the best parent for her. We got the educational part of the situation under control but other issues arose with adolescence. For example, we invited 12 “friends” to her 12th birthday and no one came. First sign to me that socially we were not handling the situation correctly. I went into a search mode to figure it out. Came across a simple bound book written about NVLD on the Internet. Bought it, read it, cried….it was my child!!!
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I am a parent of a 22 year old who was diagnosed with NVLD when she was in elementary school. My daughter had absolutely no sense of direction which made the prospect of her going out in the world and navigating the streets of New York City (where we live) very scary. What do I do, I thought. I can’t keep her tethered to me or someone else the rest of her life. Eventually, I said to myself, it is time to take the plunge. She was 12 at the time when her dad and I made the decision to put our fears aside. Thank goodness for cell phones. I knew it would be stressful to let my daughter out into the world but I knew it had to be done.
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“Julia’s visual-spatial difficulties cause her to be a hazard for herself and other students”
“Julia’s speech pattern makes her appear cognitively impaired”
“It appears Julia has a mild to moderate case of Nonverbal Learning Disorder”
These are a few [paraphrased] quotes from various IEPs and Neuropsychological reports I have from when I was growing up. I have read through these reports extensively trying to better understand me and find reasoning to why the way I am. The only conclusion I have ever drawn from these are that these are just labels and that my Nonverbal Learning Disorder (NVLD) does not define me or my life.
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Hi everyone!
My name is Abby and I’m sharing on what it’s been like being recently re-diagnosed with NVLD.
I was really little when I was diagnosed with learning disabilities so I wasn’t fully aware how they would impact my life until I went to school. I knew I was different from my friends; for a long time I couldn’t put my finger on quite what it was, but knowing I was different made me feel like I would never fit in.
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The challenges in finding and keeping employment for young adults on the autism spectrum are well documented, with studies indicating that 75 to 85 percent are unemployed. However, there are no employment statistics for adults with NVLD, although, according to Yvonna Fast, author of the book Employment for Individuals with Asperger Syndrome or Non-Verbal Learning Disability, a high percentage are also thought to be unemployed or underemployed.
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Just for a moment, imagine spending the first 18 years of your life unaware that Nonverbal Communication exists. While going to school, playing sports, and attending family events, you are unaware of all non-verbal communication. Imagine, you are eating dinner with your entire family on your birthday. Everything’s going smoothly, until you mention how funny this cat video you saw on the internet was. As you explain, you do not notice the disinterest in the faces of your friends and family.
Nobody has verbally stated that they did not think the video was funny. So you assume everyone is enjoying your video explanation, when really, they’re not. While communicating you are not making any eye contact, but instead you are looking around the room, because all of your focus is on explaining the cat video verbally. You pay little attention to your body language because you do not even realize it exists as a form of communication.
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