Why does my child hate jigsaw puzzles? And other thoughts on NVLD

If you’ve ever wondered why your child was different from other children their age, and they went on to receive a diagnosis of being neurodivergent, you probably also have a long list called “100 things that we noticed early on which totally make sense now”. This is that kind of article, but for a relatively little-known type of neurodivergence called nonverbal learning disability (NVLD). 

To start with, this condition has a misleading name, as people with NVLD are extremely verbal. In other words, the person with the disorder is not a non-verbal person; rather, the person with the disorder has issues learning things that are not verbal. To avoid the very widespread confusion that this nomenclature causes, and to clearly distinguish it from non-verbal autism, there is a proposal to change the name to Developmental Visual Spatial Disorder (DVSD). This is a much better name because it actually describes the problems: difficulty with visual-spatial processing, in addition to challenges with motor coordination, and understanding nonverbal social communication. Let’s dive into what that might look like at different ages; the caveat is, as with any neurodivergent condition, there are as many versions of DVSD as there are people with DVSD. The below is a description of one child with DVSD. 

Our son never liked tummy time and was content to lie on his back despite the usual attractions of toys placed just out of reach. He was late to roll over, sit up, and crawl. He started walking at 18 months, thanks to a few sessions with a physical therapist. As he had been born 5 weeks pre-term, a lot of this was attributed to a slight delay in catching up. Combined with the fact that he had a vocabulary of ~60 words at the age of 14 months (as opposed to the ~5 words that are expected by that age), it was assumed that he was working hard on his language skills and therefore the other skills hadn’t progressed as much, which sort of made sense at the time. We also noticed that he kicked more with the right leg than with the left as a baby, and walked with a slightly unbalanced gait as a toddler, leaning more on his right leg than on his left. It took him about 3 years to learn how to ride a bike. Climbing structures posed a real challenge for the longest time, as did any other games that required using both halves of his body in coordination. But it wasn’t just the gross motor skills - he held crayons with his entire palm rather than with a tripod grip, up until age 5. Once he had acquired the tripod grip, he had a very light and barely visible handwriting. At age 9, he still holds cutlery with his entire palm and sometimes needs help unsealing plastic water bottles.

There were also plenty of clues about the visual-spatial issues. As the title suggests, he has never been a fan of jigsaw puzzles, or building legos, especially if there is an instruction manual involved. He has trouble putting on clothes in the correct direction, often wearing them front to back. Tying shoelaces is also a challenge, as it involves spatial understanding and motor planning. Environments that are visually “noisy” can be overwhelming (eg, Halloween fairs), as can environments that require motor planning plus dealing with visual chaos (eg, crowded playgrounds).

While it may be easy to understand how this condition affects a person’s understanding of how objects fit together in space, one crucial piece is that it also affects a person’s understanding of where they themselves are in space. What this looked like in the early ages was our son not understanding how far away from others he was sitting during circle time, or how closely he was standing to someone in a line. This kind of “where do I fit” problem especially extends to social situations. In pre-school, when the teacher would announce that it was time for free play, he would often be standing in the middle of the classroom, unable to decide which station he wanted to play at. At lunchtime, if there were many options for where to sit, he would be unable to choose, until a teacher gently coaxed him to sit at a particular spot. When he started at a new school, he wouldn’t walk across the classroom to get water from his bottle for the first few days - he told us that he felt shy, which, in hindsight, was probably a combination of spatial planning difficulties and discomfort with being visually noticed, whether that meant walking through a crowd of noisy classmates, or crossing a quiet room while other kids turned to look.    

DVSD also results in social skill deficits, leading to potential confusion with ASD. But the differences are quite distinct once you know to look for them. Our son often takes things at face value. He responds to the literal meanings of words, rather than looking for the intent behind them. When my husband and I engaged in playful bickering in front of him, even with big smiles on our faces, he had trouble registering that it was friendly, hearing only the words being spoken aloud. There is also difficulty with picking up on nonverbal cues from others. If he misheard a teacher’s instruction, he would not look around to see what everyone else was doing. He would plow on ahead with whatever he thought he was meant to do, even if it was very very obvious that no one else was doing the same thing. He often also has trouble reading people’s emotions or reading the room. Conversational turn-taking is another challenge, where DVSD can show up as a “where do I fit” challenge. Those with DVSD are simply very verbal and talk in long run-on sentences that often cause people to lose interest in the conversation. This type of conversational turn-taking issue is worth distinguishing from what is commonly seen with ADHD, where interruption comes from impulsivity. From the perspective of a person with DVSD, they are not interrupting anyone else, they are simply not done talking and are still in the middle of their turn, and anyone trying to stop them is seen as the interruptor. 

Now that I’ve shared some of the challenges, I should add that there are many strengths in a DVSD profile, chief among them being the exceptional verbal ability. When our son underwent neuropsychological testing at age 6, he tested at a college reading ability for decoding words. He has also consistently tested several grade levels higher on various school assessments.  What this can look like is an ability, starting from a young age, to hold long conversations on a variety of topics with adults, who are able to respond back with equal enthusiasm (this rarely works with age peers). 

DVSD also brings with it an exceptional capacity for auditory/verbal memory, eg, being able to remember verbatim what someone said 2 years ago in a conversation, or remembering what his music teacher taught him last year with perfect accuracy. Sometimes, I’ll make a casual comment about needing to remember to do a task 10 days into the future - even if I forget, our son will ask me on the exact day when the task needed to be completed whether I remembered to do it. When a child with DVSD is exposed to a variety of knowledge sources (especially written or auditory, like books, radio shows, podcasts, audiobooks), they will accumulate all of that knowledge and have great recall. This allows them to make connections between ideas readily when their curiosity and creativity are encouraged. For our son's personal interests (science and nature), this looks like an immense amount of knowledge that he is able to access at any point in time. For example, at the beginning of third grade, when his teacher handed out a drawing assignment (“It’s not X, it’s Y [insert your creative idea]”), he turned a half-drawn spider into a trisolar syzygy, a concept he had read about a few months earlier in the Three Body Problem (rest assured he did not read the violent bits at the beginning). Another common occurrence in our life is that we go on hikes around the bay area, led by docents who talk about the native flora and fauna of that locality - he will often remember the scientific names of species that he has seen or heard about once, many months later. 

People with DVSD can be extremely rational and logical, which is truly a blessing in current times. When faced with facts or when given an honest, deep explanation for a choice, our son will change his mind and his behavior to his own best interests. For example, as a toddler during the pandemic, he had gotten used to a certain amount of screen time, which we had been trying to reduce unsuccessfully using all the usual ways that parenting blogs and posts advise you to (providing clear time limits, giving a 5-minute advance notice before it’s going to end, offering alternative activities that involve family-time and real connection, etc). All these efforts had been in vain until one day, aged 6, he heard a radio show about how screen time increases the risk of mental health issues in teens. He decided that very day that he would stop using his iPad - and he did. Nobody in our household even knows where that iPad is, as it hasn’t been touched in the last 3 years. Screentime is now limited to family movie nights once a week, which we all look forward to and enjoy guilt-free. Another example of this rational behaviour concerns food - if he is told that a particular food is healthy for him (with a detailed explanation of how it works, of course), he will consume it even if he is not a fan. The same goes for chores, finishing homework, and myriad other life choices - all of these became easy once we realized that he is really looking for a real, rational explanation for why one choice is better than another. 

This is not to say that he is an easy-going child - he expects everyone else to also be rational and gets upset when others don’t make reasonable choices, or, for example, when a teacher or authority figure says “because I said so”. This upset can also extend to situations where someone tries to simplify concepts for others. As a kindergartner, he couldn’t agree with his teacher using the example of a sheet of paper versus a building block to explain the differences between a 2D and a 3D shape - his response was to point out that a sheet of paper was also 3D and all you needed to do was to look at it under a microscope.

For those of you who have a 2e kid at home, this all probably sounds very familiar as an overall pattern. Maybe some of you can relate deeply as many of these traits are shared with the more commonly diagnosed ASD or ADHD. We were very lucky to have had an evaluator who was familiar with the NVLD/DVSD profile and was able to point us to the correct diagnosis and clearly explain why it was this and not other diagnoses. What also helped was that we were able to do a comprehensive evaluation rather than an evaluation with a specific condition in mind (eg, specific to ASD or ADHD), so the evaluator was looking at the full picture as opposed to only the questions on a particular questionnaire. My hope with this article is to increase awareness around what a child with NVLD/DVSD can present with, and for parents to know that there is a community that can provide support if needed. While there are online support groups, the best place to find information on this condition is The NVLD Project website and Youtube videos. 

Given that NVLD/DVSD is not recognized formally by the DSM, it is not very well known outside of the patient and research community. It is often misunderstood by teachers as a form of autism (thanks to the nonverbal in the name), with the result that teachers will often tell us how much our son participates in class or how chatty he has been recently, which is neither surprising, nor a goal we are working toward. I have found it useful to have conversations at the beginning of every school year, outlining the main challenges that he is likely to face, and presenting it as a sort of “opposite of dyslexia” - I’ll often explain that it’s a learning disorder like dyslexia, but one where the reading ability is a strength and the spatial processing ability is a weakness. This also helps with moving the framing away from the ASD lens that most teachers are familiar with and jump to when they hear “nonverbal”. As with other 2e profiles, the high verbal ability and memory will often hide or compensate for the other challenges, and so it is necessary to push for a deeper understanding on the educator’s end. From the scientific perspective, there are many hypotheses and observations around the causes and prevalence of NVLD, and a real push for DSM inclusion, but that's an article for another time.