Symptoms and Uncertainty: Is It NVLD?

When a bright child struggles in school, parents often sense that there’s something holding their child back, but they don’t know what it is. In search of an explanation, they might turn to education and mental health professionals to assess the situation and diagnose the problem. But finding a diagnosis that accurately captures a child’s capabilities and challenges is not always a simple or straightforward process. Following is a fictionalized account of one family’s search for answers and guidance, an account that reflects the experiences of many parents of twice-exceptional children. In it, you’ll also see how the parents’ quest can become even more complicated when a diagnosis or label suggested by one clinician might not be widely known or recognized throughout the entire health care community, as is the case with a disability discussed in this article, nonverbal learning disorder (NVLD).

Meet Aubrey

Middle school’s been tough for Aubrey. Her parents have seen a marked change in their 13-year-old daughter’s behavior, grades, and attitude toward school. Since she started middle school, Aubrey seems anxious and unhappy much of the time and has had trouble fitting in with her classmates. Her teachers say that she’s disorganized and often seems inattentive and uncooperative. Concerned about the situation, Aubrey’s parents have taken her to see several different health-care professionals in search of someone who can explain what’s happened, why their daughter has gone from a mostly successful student to one who’s struggling. An early diagnosis was inattentive attention deficit disorder, but a prescription for stimulant medication did little to help the child. Based on her reading, Aubrey’s mother wonders if her daughter might have autism spectrum disorder.

In the Past

Aubrey’s parents remember their daughter as a bright and precocious baby, though not an active one. “Never was much of an explorer or a climber,” her father recalled. Aubrey was an early talker and an early reader. “Once she started talking, she never stopped!” her mother exclaimed. “And from early on, her vocabulary surprised us all. She sounded like a little adult.” Aubrey was always asking questions and could memorize things easily. She started reading long before she started school. Looking back, Aubrey’s mother says that she and her husband were certain their young daughter was gifted, but they also sensed there was something different about her, something they couldn’t quite put their finger on. Cutting with scissors was so hard for Aubrey, and learning to dress herself and tie her shoes caused nothing but frustration and tears. Learning to ride a bike was no easier. Aubrey’s preschool teachers noted how bright the girl was, but they also remarked on how little interest she showed in playing with toys. Aubrey seemed to prefer watching her classmates play with the objects in the classroom rather than joining in or playing with the toys herself.¹ They observed how hard it was for the child to hold a crayon or a pencil, the trouble she had identifying shapes and drawing them, and her refusal to play with puzzles. In early grade school, Aubrey, a very strong reader, did well in most subjects. Despite being a whiz at math facts, however, arithmetic was a struggle for her. She often misread the mathematical signs. Understanding fractions or reading graphs and charts also were never easy for her, and trying to line up the figures when doing long division could cause a meltdown. Also, Aubrey could appear awkward and uncoordinated in gym class, and telling time and tying shoelaces continued to be problems long after Aubrey’s classmates had mastered these skills.

A Continued Search for Answers

Aubrey’s parents decided to dig deeper into the complexity of their daughter’s situation. She was scheduled to see a new psychologist — actually a neuropsychologist — and undergo psychoeducational testing to discover her cognitive and learning strengths and weaknesses, as well as her social/emotional functioning. On the first visit, the neuropsychologist, Dr. Beck, took a detailed family and developmental history. She learned about how dramatically things had changed for Aubrey as the child grew older, with the increased demands of middle school seeming to mark a turning point for the girl. Now that she was in a building much larger than her grade school, Aubrey told Dr. Beck, she frequently found herself getting lost. The middle school workload was heavier and more demanding. She struggled to follow the confusing, multistep directions from her teachers and to keep her materials and assignments organized. Used to being praised as a good reader, Aubrey now was often unable to answer questions about what she had read. And worst of all, she felt like an outsider among her classmates. In fact, Aubrey felt she hadn’t made any friends in middle school and didn’t understand why. From Aubrey’s parents, Dr. Beck learned that they no longer heard the same kinds of glowing reports from teachers that they’d heard in the early years of school. Instead, they heard that their daughter’s behavior could be off-putting to other students, like talking excessively to them, bumping into them, or standing too close. Teachers complained that Aubrey seemed to disregard their subtle hints or warnings about what they saw as immature, out-of-place, or sometimes even defiant behavior. They also noted that Aubrey didn’t seem to be working up to her potential. The teachers suggested that her grades would improve if she would just try harder, pay better attention in class, and follow instructions. They thought she would probably start making friends if she just toned down her behavior and listened more than she talked.

Time for Testing

The next step Dr. Beck took was a neuropsychological evaluation. This process includes a variety of tests in a number of areas to evaluate Aubrey’s skills and abilities linked to brain function. Included would be tests of:

• Intelligence
• Executive functions (mental skills such as those needed to plan, organize, and control emotions and behavior)
• Memory
• Attention
• Language ability
• Reasoning and processing abilities
• Sensorimotor functions (how the body translates sensory information into motor actions)
• Motivation
• Emotional state

After the testing was completed, Dr. Beck produced a report that summarized and explained the results and offered recommendations for both Aubrey’s parents and her teachers. She met with the family to discuss the results.

Interpreting the Results

Testing showed Aubrey to be in the superior range of intelligence, as her parents suspected she would be. However, her scores varied considerably across the various skills and abilities tested. Scores were highest — sometimes well above average — in the verbal portions of the assessments given. Among the abilities measured in this part of the testing were communicating through spoken language and using both spoken and written language to analyze information and solve problems. For the most part, Aubrey’s scores were lowest — average and below — in the non-verbal areas of testing. These focused on drawing information from visual sources; for example, recognizing patterns and sequences, visually identifying similarities and differences, and predicting outcomes based on visual information. Two other areas where Aubrey’s scores were below average were in processing speed and executive functioning abilities. Additional difficulties showed up her use of language in social situations, meaning that despite Aubrey’s advanced vocabulary, she struggled with pragmatics, the unspoken rules of both verbal and nonverbal communication. A lack of understanding of these unspoken rules can leave an individual unable to participate effectively in the back-and-forth of a conversation and unable to understand the idioms, humor, and sarcasm that people might use in talking with one another. [perfectpullquote align=”full” bordertop=”false” cite=”” link=”” color=”” class=”” size=””]In early grade school, Aubrey, a very strong reader, did well in most subjects. Despite being a whiz at math facts, however, arithmetic was a struggle for her. She often misread the mathematical signs. Understanding fractions or reading graphs and charts also were never easy for her, and trying to line up the figures when doing long division could cause a meltdown.[/perfectpullquote] Dr. Beck explained that the highs and lows of Aubrey’s scores were typical of a twice-exceptional individual, someone who displays characteristics of both giftedness and learning challenges. Twice-exceptional was a new term to Aubrey’s parents. The results of the evaluation also indicated to Dr. Beck the presence of inattentive attention deficit disorder and anxiety. In addition, based on Aubrey’s cognitive, academic, and memory profiles, Dr. Beck explained that she meets the criteria for nonverbal learning disorder, often referred to as either NVLD or just NLD. This term, as well, was one that Aubrey’s parents had never heard before. They listened as Dr. Beck stressed that each individual with NVLD is unique, with his or her own profile of strengths and challenges, and went on to help them understand the disorder.

What Is NVLD?

Aubrey’s parents learned that it can be hard to get a clear picture of what NVLD actually is because it has no agreed-upon definition. One mental health professional, New Jersey psychotherapist Benjamin Meyer, LCSW, describes NVLD as: “[A] set of strengths in verbal memory and vocabulary, accompanied by visual-spatial, fine motor, and social difficulties that include decoding body language and understanding inference and humor. Many with NVLD also face challenges adapting to frequent changes and novel situations and struggle to see the big picture, focusing on the details of a story or essay instead of the main theme.” (“NVLD: What is it and Why is it Not in the DSM?” https://nvld.org/nvld-what-is-it-why-not-in-dsm, February 26, 2020) There are mental health professionals who are skeptical that the disorder actually exists. One, Arizona neuropsychologist Paul Beljan, Psy.D., ABPdN, ABN, says of NVLD, “I’ve always had difficulty with the diagnosis because it never seemed neuropsychologically viable. It seemed very consistent with other things instead.” In explaining the “other things” that he was referring to, Beljan says that usually when he sees a child who supposedly has NVLD, “it looks exactly like Asperger’s [high-functioning autism spectrum disorder], or possibly social communication disorder, or a more subtle executive function deficit.” Among those who accept NVLD as a diagnosis, there is agreement that other disorders often coexist with it. Disorders most commonly described as overlapping with NVLD are:

• High-functioning autism spectrum disorder
• Attention deficit disorder
• Social (pragmatic) communication disorder
• Developmental coordination disorder (sometimes referred to as dyspraxia and characterized by motor coordination difficulties)
• Anxiety

Also in the health field are those professionals who have no familiarity with NVLD. Addressing that issue, Prudence Fisher, Ph.D., a research scientist and associate professor of clinical psychiatric social work, explains: A lot of people don’t know what NVLD is because it’s not in the DSM [Diagnostic and Statistical Manual of Mental Disorders, used by health professionals and others to diagnose and classify mental disorders]. Part of the problem is that to be in the DSM, you have to define the disorder, and there’s no official definition at this time. If you look at the research, people use very different definitions of NVLD. Some require executive functioning problems, social problems, and motor discoordination. Some say there’s a split in the IQ testing results between verbal and performance, which is not unique to NVLD. [perfectpullquote align=”left” bordertop=”false” cite=”” link=”” color=”” class=”” size=””]“I’ve always had difficulty with the diagnosis because it never seemed neuropsychologically viable. It seemed very consistent with other things instead.”[/perfectpullquote] Fisher is involved in an effort to remedy this situation. She heads a group of investigators at Columbia University Medical Center’s Department of Child and Adolescent Psychiatry who are preparing a proposal to include NVLD in the DSM. A key part of this multistep process is coming up with a standard definition of NVLD that would be acceptable to the field and based on research data. According to Fisher, she and others in the field have worked together to draft such a definition. The product of two consensus conferences held over the course of several years, the new definition focuses on visual-spatial issues. The reason, Fisher explains, is that these issues are unique to NVLD. “You don’t see these kinds of difficulties in visual-spatial perception in other disorders such as ASD or ADHD.” The group working on the new definition also hopes to give NVLD a new name. They feel, says Fisher, that the existing name is confusing to people. In her experience people often say, “So these people don’t talk?” To avoid this misconception, the group’s recommendation is to change the name to developmental visual/spatial disorder, a name they believe to be far more accurate. It describes what these researchers have identified in individuals with the disorder, what Fisher describes as “a persistent deficit in processing and integrating visual and spatial information [despite] having good or adequate verbal communication skills.”

Why Being in the DSM Matters

There are advantages that come once a disorder appears in the DSM. One key advantage, as already mentioned, is having an agreed-upon definition. A definition lends legitimacy to a diagnosis, which can improve access to treatment and services and increase the likelihood of insurance coverage. After all, the DSM is a guide to the billing codes used in the mental health industry. Furthermore, inclusion in the DSM can help to increase awareness of the disorder among health care professionals because training for many in the field tends to focus on the diagnoses contained in the manual. [dropshadowbox align=”right” effect=”lifted-both” width=”35%” height=”” background_color=”#ffffff” border_width=”1″ border_color=”#dddddd” ] Where to Learn More About NVLD Articles: 14 Ways to Help a Child with NLD Succeed A Letter to Teachers Developing an Educational Plan for the Student with NLD How Can We Help Kids With Non-Verbal Learning Disorder? Non-Verbal Learning Disabilities NVLD vs. Asperger’s NVLD: What is it and Why is it Not in the DSM? Understanding Nonverbal Learning Disabilities Visual-spatial learning disorder is more common than thought, finds study What Does Nonverbal Learning Disorder Look Like in Children? What is Non-Verbal Learning Disorder? Why Nonverbal Learning Disorder is So Often Mistaken for ADHD Website: The NVLD Project Books: Helping Children with Nonverbal Learning Disabilities to Flourish, by Marilyn Martin, Jessica Kingsley, 2007 Raising NLD Superstars: What Families with Nonverbal Learning Disabilities Need to Know about Nurturing Confident, Competent Kids, by Marcia Brown Rubinstien, Jessica Kingsley, 2004 [/dropshadowbox] Greater awareness and understanding of a disorder can lead to more research into the disorder and most importantly, according to Fisher, to more uniform research. As she explains, “If different researchers are using different definitions, it’s very hard to compare [their research results] to one another.” Currently, a team of researchers at Columbia University Medical Center, headed by Fisher, is working to gather the research data needed to support the proposal to have NVLD — with that name or a new name — added to the DSM. As part of this effort, researchers are studying the brain structure and behavior of individuals with NVLD. Funding for the project comes from The NVLD Project, a nonprofit advocacy organization that works to increase understanding and spread awareness of the disorder.

Recommendations for Aubrey

In addition to familiarizing Aubrey’s parents with NVLD, the neuropsychologist’s report offered recommendations about what they could do to help their daughter at home and what her teachers could do to provide her with the support needed for success in school. Both at home and at school, their daughter would benefit from building on her strengths — such as her intellectual giftedness, verbal skills, and memory — to compensate for her weaknesses — her motor coordination issues, for example, and her difficulties interpreting visual information, staying organized, following instructions, and interacting socially. The report noted that Aubrey had been successfully doing this — using strengths to compensate for weaknesses — throughout the early years of school. Now, however, as the demands of the upper grades increased, she was unable to compensate adequately for her challenges and needed help. According to the report, among the ways that her parents could help Aubrey would be by doing the following:

• Providing structure and routine
• Using clear and detailed language to talk through things with Aubrey that she might not understand or that might prove challenging for her, such as making transitions or encountering changes to her routines
• Learning as much as they can about her exceptionalities and sharing that information with family members, friends, school personnel, and others who regularly interact with Aubrey
• Giving her opportunities to take part in pastimes and activities that reflect her special interests and talents where she might find success and also have the opportunity to meet others and build friendships
• Establishing a partnership with teachers, regularly exchanging information about what is working well for Aubrey and what might need adjustment
• Advocating for Aubrey at school and helping her learn to advocate for herself

In terms of getting help at school, Dr. Beck’s report listed ways that teachers could provide Aubrey with the support she needs to be a successful student. Among these were:

• Encouraging the use of technology wherever possible to replace handwriting and to help with organizing and structuring time and materials
• Supplementing written instructions with verbal instructions, either recorded or in person
• Providing verbal explanations of visual material to help make the abstract (e.g., concepts, ideas, relationships) more concrete
• Helping Aubrey see patterns that could help her relate new learning and experiences to what has come before
• Testing understanding rather than assuming that Aubrey comprehends what she has heard or read
• Working with Aubrey to analyze social situations gone wrong and providing scripts for her to use to try to avoid those social missteps in the future
• Rehearsing how to navigate through the school building using verbal cues
• Offering assignment options that challenge Aubrey intellectually and play to her strengths

Dr. Beck explained that additional help for Aubrey could come from professionals such as physical and occupational therapists to improve motor coordination and a speech-language pathologist to help with her use of language in social situations. She added that Aubrey, like other twice-exceptional children, could benefit from psychological counseling, as well, to help with issues like managing her anxiety and attention deficit, and rebuilding her damaged self-esteem.

Next Steps

Armed with the information they had gained about their daughter’s diagnosis, Aubrey’s parents took some time to absorb it. Plus they had plenty of research to do about both the gifted and the learning-disabled sides of their daughter’s learning profile. [perfectpullquote align=”right” bordertop=”false” cite=”” link=”” color=”” class=”” size=””]“You don’t see these kinds of difficulties in visual-spatial perception in other disorders such as ASD or ADHD.” [/perfectpullquote] Once they agreed that the neuropsychologist’s findings and recommendations made sense to them — based on their own experience of their child’s strengths and challenges — Aubrey’s parents began making the changes at home listed in the report. Then they turned to Aubrey’s school. Dr. Beck cautioned that it might be difficult to get the full range of support for their daughter that the report calls for. Aubrey would probably benefit most from having an IEP, an Individual Education Program provided under the federal Individuals with Disabilities Education Act (IDEA). To qualify for this special education service, a student must have an educational disability that fits into one of the categories specified in the legislation. Because NVLD is not specifically addressed in IDEA, Dr. Beck offered to work with the school, if needed. Her role would be to help the educators better understand Aubrey’s learning challenges and to see how she might qualify for an IEP under the broader category of disability called Other Health Impaired. Another option, Dr. Beck suggested, could be getting a 504 Plan for Aubrey, a written plan provided under a federal civil rights law that is easier to qualify for but offers less formalized support.

The Future

Aubrey’s parents anticipate that it will take a considerable amount of communication and cooperation with the school to turn things around for their daughter, and they are committed to working to make that happen. However, both parents have come to understand that finding just the right combination of enrichment and accommodation that a twice-exceptional student like Aubrey needs to thrive can be a challenging task. For now, the family will put their plans into action and see how things work for Aubrey. They are keeping in mind that there will likely be changes over time in her needs as she moves through adolescence and on to greater challenges in high school and beyond. These changes may require finding a different learning environment, one better suited to meeting those future needs. While there might be controversy among various professionals about her diagnosis (Is it NVLD, autism spectrum disorder, or something else?), Aubrey’s parents feel encouraged because they now have a much clearer picture of their daughter’s capabilities and challenges, and they have a path forward for helping her achieve what she is capable of with the proper support.

Additional Information

Expert Insights on Issues Related to NVLD

When asked about several common situations that parents of gifted children diagnosed with NVLD encounter, two mental health professionals from the Summit Center in California offered the following insights. They are psychologist Dan Peters, Ph.D., Summit Center executive director and co-founder, and neuropsychologist Michelle Freeman, Psy.D., assessment director. Both are experienced in assessing, diagnosing, and meeting the psychological and educational needs of twice-exceptional children with learning disabilities and differences.

NVLD-related Issue	Experts’ Response
The possibility that NVLD will not be accepted as a diagnosis	In addition to diagnosing a child with NVLD, clinicians may also do the following: Include other DSM-V diagnostic labels that capture aspects of the profile, such as Social Pragmatic Communication Disorder or Unspecified Neurodevelopmental Disorder. In these cases, the clinician will explain NVLD to the family, diagnose it, and make the case for additional diagnostic categories. In some cases, a clinician may diagnose ASD if there are enough symptoms to support the diagnosis and the reasoning behind the diagnosis is explained to the parents.
Difficulty getting an IEP when the diagnosis is NVLD	The likelihood of getting an IEP is dependent on the IEP team. Those who are aware of the label and/or understand the challenge areas will be able to qualify a student under the OHI (Other Health Impaired) category [of IDEA], as in the case of students with severe ADHD. In most cases a 504 Plan may be easier to qualify for, yet will not be as comprehensive or supportive. As with most learning and developmental challenges, the level of support needed (IEP or 504) depends on the severity of the challenges.
Finding a learning environment where a twice-exceptional child with NVLD can be successful	Finding the right learning environment depends on the child’s unique profile and needs. Those with NVLD may find more success in smaller classroom settings; in school environments that are equipped to provide acceleration and enrichment for gifted abilities, talents, and strengths, but also are sensitive to accommodating areas of weakness; and/or homeschooling or an alternative form of non-traditional school setting.