The NVLD Journey

Deb Browne
Speech-Language Pathologist

Think of your next hairstyle . . . what you’re having for dinner . . . an alternate route home. What happened in your brain? If you’re like many people, pictures flashed. If you came up with a list (chin length bob, slightly turning in at the bottom, straight platinum white hair – you get the idea), you may be among a subset of those with Nonverbal Learning Disability (NVLD), who think in words rather than pictures.

The journey of those with NVLD often includes getting lost along the way, in more ways than one. They can literally get lost easily, without visual memories of where they’ve been, or a spatial plan of where they are going. And they are often lost in a larger sense – with a significant disorder, adrift in an educational system which has had no clear path for them, because this disorder has been unseen and misunderstood.

At Brehm, we have four decades of experience teaching us that this group is best served with a holistic approach – from Maslow’s to Bloom’s – supporting the language, social, emotional, and executive functioning needs of those with NVLD. I’m a speech pathologist at Brehm where I’ve seen how they struggle and what can help.

The journey begins at birth, since this is a brain-based disorder. They may have a normal APGAR score. Between ages three and five, children may avoid drawing and other fine-motor activities as well as those requiring complex motor skills, like riding a bike. (Cornoldi, Cesare, et al. Nonverbal Learning Disabilities. The Guildford Press 2016.) One parent recalls her child being uninterested in puzzles, in fact he would throw them across the room! Otherwise, he did well on preschool assessments, except struggled with the sequencing tasks.

In grade school, they may be precocious early readers and pick up higher-level vocabulary. This sets up performance expectations among teachers who are dismayed when homework is late or missing. Math, on the other hand, is very hard to learn. Handwriting is often illegible; they feel shame hearing: “slow down! You can do better!” The thoughtful part of writing, the language itself, then becomes spoiled with the angst of the fine motor problem of writing at a young age, and a lifelong hatred of “writing” begins. 

Socially, this group often makes social faux pas that leave them baffled. They don’t read the social signals; they talk too much, give too much detail, don’t notice when others don’t care. They may develop anxiety, perhaps due in part to their social mistakes, but also misunderstanding visual cues of many kinds, mystifying to others but most of all to the individual. One student started shaking whenever it was cloudy, thinking all storm clouds meant a tornado. She also mistook a strange man at an airport for her father. Another had memorized the list of facial features that told him his mom was mad. 

Parents may seek reasons for the academic and social difficulties. Hours of testing ensues. Psychological testing may find very poor spatial relations in the drawing tasks and other visual-spatial assessments. Yet these difficulties are not always thought of as contributing to academic problems, and the lower Visual Spatial Processing score compared with a higher Verbal Comprehension score is often overlooked in the final analysis — that is unless they have a bold psychologist.

In order to diagnose the problem and identify NVLD, the assessing psychologist has to go out on a limb, ahem, I mean, use their professional judgment. That’s because the disorder is not (yet?) officially named in the DSMV. (See previous blog.) 

Unfortunately, imho, the way the latest version of that diagnostic bible is written allows the diagnosis of autism to be applied even when language scores are intact or high, and visual spatial are lower, contrary to the traditional (old school) understanding of autism. The permitted exception is noted as “ASD without language impairment.“ 

Providers and those doing interventions are not well served by this group being called autistic. It is misleading, to us and to the “labeled.” At our school we have seen a good number with all the telltale signs of NVLD but have the autism diagnosis. We are lucky enough to have access to the psychological reports. So we can look into the scores to understand that they may not be utilizing their visual cognition to support learning. This has much wider implications than meet the eye, so to speak. 

In my 25 years of therapeutic experience as an SLP, nearly all of the students who have this profile have trouble with reading comprehension and writing organization, the skills that really come to the fore at the high school level. 

Talking with someone with NVLD, or reading their writing, is often a very linear experience with an excruciating level of detail. It can be very hard for them to just give you a summary or a main idea. Both of these are critical for writing a five sentence paragraph, and even socializing, if you think about it. I had one student write an essay that went on for 14 pages without a period. Another started quoting directly from a novel (long paragraphs—from memory) without any preamble about why. When I asked what the heck he was talking about, he said he was trying to cheer me up. Without introducing his recitation with that purpose, I had doubts about his psychological state.

In her book, “Misnamed Misdiagnosed Misunderstood; Recognizing and Coping with NVLD from Childhood through Adulthood,” Linda Karanzalis, MS, BCCS, describes her journey from childhood through young adult years with NVLD as filled with failure, to the point she retreated into depression, spending weeks in bed without bathing and hardly eating. She lost hope.

At Brehm, we don’t let that happen. We rejuvenate hope by using knowledge of how they learn to help them find academic success and social connections. We provide a normalized high school experience; and most of all, help them believe in their own potential and follow their own passion. This takes a dedicated staff of experts working holistically. Read the next blog to find out how that really works.

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