What You Can’t See Can Hurt
“I am invisible simply because people refuse to see me.”
– Ralph Ellison, The Invisible Man
Since an NVLDer’s (nonverbal learning disorder) appearance doesn’t reveal the discrepancy between their exceptional verbal communication and their poor nonverbal communication (body language, facial expressions, gestures, tone of voice), neurotypical people assume NVLDers are neurotypical. This assumption lays the foundation for misunderstandings in every setting in which humans communicate and can lead to mental health challenges, job stress, and poor physical health for the NVLDer as well as workplace setbacks that will impact NDs in significant ways too.
Moreover, the term “nonverbal” implies that people with NVLD don’t speak. In fact, most NVLDers have exceptional vocabularies, expressive language, and auditory memory as well as an impressive range of knowledge in many different areas. It can seem inconceivable to others that NVLDers have significant difficulties functioning day to day.
Many NVLDers out there are the “walking wounded.” Parents are desperate to help their children, both young and adult, who have slipped through the cracks and are experiencing pain and rejection, despite their best efforts. These parents also often suffer from stress, depression, anxiety, and other mental health challenges when they are unable to help their kids. Many of these children will continue to live at home, struggling well into adulthood, and will need ongoing support.
Adult NVLDers who are working through challenges on their own, with or without support from their parents or professionals, watch as their peers pass them by. Their classmates, team members, and neighbors progress from grade school to high school, from college to careers, from living with their parents to living on their own, from dating to marriage to parenting, from making acquaintances to building lasting friendships, from professional advancement to financial gains, and from renting to owning their homes
NVLD may be the most overlooked, misunderstood, misdiagnosed, and misnamed learning disability. According to “Estimated Prevalence of Nonverbal Learning Disability among North American Children and Adolescents,” published in the April 2020 issue of the Journal of the American Medical Association (JAMA), between 2.2 and 2.9 million children under the age of eighteen in the United States and Canada may have NVLD.
NVLDers have difficulties with visual-spatial processing, executive functioning (planning and prioritizing), recognizing and processing nonverbal social communication cues (facial expressions, body language, tone of voice), academics, motor skills, social-emotional learning, higher-order thinking (forming conclusions from facts), and mathematical concepts. Because of their significant difficulty processing nonverbal communication, which often changes the speaker’s spoken message, NVLDers frequently make inaccurate conclusions when communicating with others. This in turn impacts their ability to effectively respond and express emotions, opinions, intentions, and ideas within the context of a conversation.
Nonetheless, as many as 50 percent of them have received no diagnosis. Overlapping symptoms and co-occurring disorders may cause those with NVLD to be misdiagnosed as having ADHD or autism level 1 (a variant of autism formerly known as Asperger’s syndrome) and therefore, NVLD to be underdiagnosed. Marcia Rubinstein, an education specialist in West Hartford, Connecticut, once said that almost every child she saw with NVLD had first been diagnosed with ADHD.
Despite the overlapping symptoms in all of these disorders, the causes stem from differences in brain pathology that distinguish one disorder from another. A nonverbal learning disability is believed to be caused by damage, disorder, or destruction of neuronal white matter in the brain’s right hemisphere. Adding to the confusion is disagreement among professionals within the psychological and educational communities. Since NVLD is not included in the Diagnostic and Statistical Manual of Mental Disorders (DSM), it isn’t recognized as an official disorder. The DSM is the bible of mental disorders, used by professionals as a reference for descriptions, symptoms, and criteria to make an official diagnosis required for insurance reimbursement and approval of special education services. But not all children and adults fit into the same pattern.
When we see someone in a wheelchair, we don’t hold that person accountable for things they struggle with or cannot do. Most of us understand they may need assistance and alter our expectations accordingly. Wouldn’t it be crazy and cruel to blame and reject a person for being unable to walk, as if she is doing it on purpose? There is no such sign or visible evidence, like a wheelchair, to account for NVLDers’ difficulties and socially awkward behaviors. The depression, learned helplessness, broken friendships, countless jobs, rejections, crippling anxiety, and ongoing therapy with little to no results would wear down anyone. They begin to doubt and blame themselves and may question their sanity, wondering why they are underestimated and misconstrued.
This column is an excerpt from Misnamed, Misdiagnosed, Misunderstood, my new book. If you believe you or a loved one may have a Nonverbal Learning Disorder to learn the secrets to my success, read more …
Linda Karanzalis, Board-Certified Cognitive Specialist is the author of Misnamed, Misdiagnosed, Misunderstood, a new book on Nonverbal Learning Disorder and other brain-based challenges.
Dr. Ned Hallowell, a psychiatrist, world-renowned expert on ADHD, and the New York Times best-selling author of Driven to Distraction says, “Linda’s book is vivid, compelling, full of heart and fresh understanding. Karanzalis replaces suffering with clarity and triumph for the millions of people with NVLD.”
Linda, who has NVLD and ADHD, has worked for more than 25 years with individuals of all ages with NVLD, ADHD, learning disabilities, and those on the autistic spectrum. As an author, podcaster, presenter, learning specialist, and ambassador for the NVLD Project, she provides validation, awareness, solutions, strategies, and, most importantly, compassion to the millions who live with neurodiversity. Find out more about her story and book at www.lindakaranzalis.com.