Why isn't NVLD recognized by IDEA? Which professional would have the knowledge to help my teen the most?
While I don’t know why IDEA doesn’t recognize NVLD, I’d guess that the disabilities they recognize are based on the DSM and DSM does not recognize NVLD as it’s own disability. However, most students who have NVLD are given an alternate diagnosis (Unspecified Neurodevelopmental Disorder is one example). What’s most important though, is getting your child the services he or she needs. A thorough neuropsychological evaluation should detail what the specific issues are and your child’s strengths and weaknesses. If you are looking for a therapist or learning specialist or school-based support, share the evaluation with the professionals and ensure that they understand how to support your child based on his or her individual needs. In terms of getting help for your child, the label matters less than the description of the learning profile.
Some of the attributes of NVLD fit my child like a glove -- other attributes, not so much. How do I know that NVLD is the right diagnosis for her?
NVLD day can be a confusing diagnosis. Because there are so many different areas that can be affected, any individual child may or may not have a weakness in that area. We separated out three different subtypes ourselves to help with the confusion. A child might have problems in the academic fields, might have motor difficulties, might have social difficulties, might have visual spatial difficulties or executive function issues but they did not have to have difficulties in all of these areas to meet criteria for NVLD. Without seeing your daughter scores it’s hard for us to confirm or disconfirm her diagnosis. We can say however that we have seen children who have relatively OK mathematical skills however the mathematical skills can still be lower than their reading and verbal skills. Social skills groups can be helpful for children as well as working with the speech pathologist could increase her awareness of subtle social skills. Her initial diagnostician should be able to help you with referrals in your area.
I am worried about my child's loneliness. How do kids with NVLD learn how to make friends? How can I help her when she goes away to college?
Social skills groups can be a huge help to kids who are struggling with how to make friends. Some groups are designed specifically for children diagnosed with NVLD and offer strategies and hands-on practice with how to engage in conversations, make friends, understand social situations, etc. Often, local psychological practices offer these groups or have information on groups that are forming. In addition, getting her proactive support in managing her stress and her workload will build the strategies that she needs in place when she does go to college. Working with a learning specialist or organizational tutor can offer help in this area. When looking at colleges it will be important to identify what supports different schools offer. Most colleges do have support services, and many schools offer extensive tutoring and accommodations. When your daughter enrolls in school she should make it a priority to introduce herself to the faculty in the student support office and avail herself of any help they offer.
Are there any fun math apps for NVLD students to help them maintain their learning Algebra over the summer?
The two apps recommended by math teachers working with students with NVLD are Desmos and Geogebra.
Desmos is a graphing app but what’s great about it is that you can type in an algebraic equation and it immediately graphs it for you. And then you can type in others and it displays them all simultaneously, color coded, so you can see what the various changes to the equations do to the graphs.
Geogebra, as the name implies, combines both geometry and algebra. It allows you to create basic geometric shapes and then gives the algebraic expressions (or the graphic coordinates) for them. If you know what you’re doing, it can be even more powerful because it’s also programmable so you can do some great stuff with trigonometry.
Here are the links to the reviews of these apps on Common Sense Media:
The discrepancy between VIQ and PIQ should exist but the divergence may be hidden by statistics. It is important to examine the individual subtests in each domain to determine disparities. The main idea is that language functions are far superior to visual spatial/perceptual reasoning skills.
In order to get a waver or course substitution for a student with a documented disability you would need to appeal directly to the school. If the neurologist is willing to write a report documenting the disorder under ADA and asking for accommodations, like a course substitution, the student might be granted this by the disabilities services on campus or through their particular college. We have had success with this for our NVLD students who also have a documented math disorder but it took a lot of work and appeals. We needed to help find another course that covered similar skills/content but without the same processing demands.
What percent of individuals have NVLD? What percent of those with NVLD have co-morbid learning disabilities? What research has been done with regards to how heredity plays into acquiring NVLD?
Unfortunately, we do not have reliable estimates of prevalence rates for NVLD, and by extension of rates at which other conditions co-occur with NVLD. Some research suggests that the Verbal-Spatial discrepancy, the hallmark feature of NVLD, may be under genetic control. For example, in autism a spatial > verbal discrepancy defines a particular phenotype that is linked to two genes (Chapman et al., 2011). Also in Prader-Willi syndrome the presence of a verbal-spatial discrepancy depends on the disease genotype, either a deletion or uniparental disomy (Copet et al., 2010). For more information, please see (Margolis et al, 2013).
Do you anticipate any breakthroughs that may be able to help with the social restrictiveness that many with NVLD deal with?
There are a couple of books that can help with social skills in unfamiliar environments, “The Art of Mingling,” by Jeanne Martinet and “How to Talk to Anyone: 92 Little Tricks for Big Success” by Leil Lowndes. Another resource is the “Social Thinking” work of Michelle Garcia Winner. She discusses the “Friendship Peer-a-mid” which outlines six levels of friendship from the friendly greeting acquaintance level to a close friend. These levels are outlined in the book “Social Curious and Curiously Social” by Michelle Garcia Winner and Pamela Crooke. Social Thinking workshops are given throughout the country.
Accommodations must be granted based on functional limitations that interfere with an individual’s ability to access a test and demonstrate his or her knowledge. Thus in order to request extended time (50 or 100 percent extended time), an evaluator needs to demonstrate that an individual has deficits or limitations in some area of functioning that is measured by the test. So, an evaluator needs to demonstrate how features of NVLD affect performance, for example attention problems associated with NVLD may require extended time accommodations. In another example, an evaluator might measure a person’s reading rate and show that anxiety negatively impacts reading and thus causes a functional limitation requiring the accommodation of extended time.
Children can be diagnosed with NVLD as early as five years old or even younger, although it often does not manifest until school struggles show up in fourth grade and beyond. Early diagnosis is highly recommended because early intervention can change the trajectory of development to some degree and support the child’s self esteem in the process.
People who are on the autistic spectrum or who display other known disorders can receive support such as government disability, social security or Medicare or Medicaid. Because NVLD is not officially recognized in the Diagnostic and Statistical Manual of Mental Disorders, people with NVLD do not receive the same services. This is why the long term goal of the NVLD Project is to establish NVLD as a valid disorder in the DSM.
NVLD is not a single disorder, does not manifest in only one way; rather, there are various medications that can address NVLD depending on how it presents itself. People with NVLD can be anxious, have mood swing or focus problems. Sometimes SSRIs or Wellbutrin can work. Sometimes mood stabilizers can work. Sometimes ADD medication can work. You need a doctor’s prescription for these drugs.
Do you feel that NVLD is distinct from ASD? If so, how would you try to demonstrate this to individuals who only want to label it as an ASD?
We believe that children/adults with NVLD can be distinct from those with ASD but both can have similar social issues and issues with cognitive flexibility. Those with what was previously called Asperger’s can also have visual spatial problems. We can no longer use the Asperger’s diagnosis category as it has been removed from the DSM and subsumed into the High Functioning Autism category in DSM5. We think it is a loss for those who found Asperger’s “fit them” and found comfort in having a community to relate to. Although there is no good data on the subject we find that persons with NVLD tend to at least express more desires to have social relationships than those in the Asperger’s or now High Functioning Autism groups.
NVLD does not mean you or anyone with NVLD is dumb! NVLD is a type of learning disability which by definition is caused by a processing disorder, here a visual spatial processing issue, with which a person with an otherwise average to above average intelligence must cope.
My son was diagnosed with NVLD in sophomore year of college. Are there any resources you can suggest ? He attends a very challenging Ivy League University and does have resources at school as far as extra time, the ability to record lectures, etc. However, the social piece is just getting more challenging as well as the organizational challenges.
My son has tried but failed the drivers test three times and is very upset about it. This in spite of spending tons of time practicing with his parents and seeming capable (if not super talented) enough to get his license. Any advice or resources?
This indeed can be a struggle but with enough repetition our kids can learn to drive. Each aspect of the test needs to be isolated and taught in the same way and same place as the actual testing circumstances. There are driver teachers that specialize in working with high anxiety drivers. Perhaps there are some in your area?
My 18 years’ son was just diagnosed this summer. He really struggles with doing homework and getting it turned in. What kind of help is there for him? How does one improve these executive function and/or processing speed issues? Do I need to find a "coach"?
An Executive Functioning coach can be very helpful for students, particularly those who have difficulty putting strategies into place independently. For students struggling with organization, time management, prioritization, and other executive functioning skills it’s important that they put systems in place to help them–using calendars on the phone or computer and setting reminders can be helpful. There are also several apps that students find help them keep track of their assignments and commitments. It’s also helpful to think about what your son can manage. Perhaps right now 1 class per term is what’s best. For many students diagnosed with NVLD, math is going to be a particular challenge. If math is a requirement for graduation it’s worth finding the math class that best meets his needs (e.g. a class based on geometry is going to be much more difficult) and making use of all resources available (meeting with the professor, if that’s encouraged, student tutoring, etc. Most schools have an office for students with disabilities and he should connect with them and take advantage of whatever supports they offer).
There are many organizational apps to help with executive function and some research and experimentation can help to find the right app for each individual. Apps that we have found to be successful include:
Evernote – a cloud-based storage system which allows users to create notes, capture images, make checklists, or record audio on a mobile device or computer. That information can be accessed any other device or computer. Notes are searchable abd can be tagged with keywords for easy retrieval. Users can create multiple folders to organize notes.
30/30 – A task management app that is designed around the ’30/30 work cycle’ idea of alternating between work and rest in 30-minute increments. The theory suggests that productivity and creativity increase when one intensely focuses on a project for short amounts of time and in small chunks. The reward of a significant rest can help motivation.
My Study Life – a web-based and mobile app for students to manage all aspects of academic life. With enrollment through email, Facebook or Google, student can add course schedules, track tasks, add exam dates, manage classes, and receive reminders of upcoming events. All tasks and information displays on the homepage along with approaching due dates.
A good resource on NVLD is a recent book by C. Cornoldi, I. Mammarella, and J. Goldenring Fine (2016) Nonverbal Learning Disabilities. Another resource is the book by J. Broitman and J.M Davis (2013) Treating NVLD in Children.
Jazmin Reyes-Portillo, Ph.D.
Unfortunately, our knowledge of NVLD is still largely based on published studies of children. We are currently undertaking a systematic review of the literature on NVLD, which includes available research on adults. Although we have not yet completed our review, here are the citations for two book chapters focusing on NVLD in adults: Tsatsanis, K.D., & Rourke, B.P. (2008). Syndrome of Nonverbal Learning Disabilities in Adults In L. E. Wolf, H. E. Schreiber, & J. Wasserstein (Eds.), Adult learning disorders: Contemporary issues (pp. 159-190). New York, NY: Psychology Press. Wasserstein, J., Vadhan, N. P., Barboza, K., & Stefanatos, G. A. (2008). Outcomes in probable nonverbal learning disabled (NLD) adults: A naturalistic study. In L. E. Wolf, H. E. Schreiber, & J. Wasserstein (Eds.), Adult learning disorders: Contemporary issues (pp. 455-485). New York, NY: Psychology Press. We hope to make any additional literature on NVLD in adulthood available on The NVLD Project website once we complete our review.
Jazmin Reyes-Portillo, Ph.D.