Turner Syndrome Awareness Month: My Experience with Non-Verbal Learning Disorder

I’m sure that all of you have heard of learning disabilities such as dyslexia, ADD, and ADHD but one that you may not be so familiar with is Non-Verbal Learning Disorder or NVLD. This is the learning disability most common in girls with Turner Syndrome. Unlike other learning disabilities, those of us with NVLD tend to have a large vocabulary, strong language skills, excellent rote memory, and excel at reading. Like all disabilities, each person will be affected differently and to a varying degree, but this article https://childmind.org/article/what-is-non-verbal-learning-disorder/ outlines nicely the five main areas that children with NVLD are affected:

1. Visual and Spatial Awareness.

2. Higher-order Comprehension

3. Social Communication

4. Math Concepts

5. Executive Functions

As a child, my visual and spatial awareness issues were very apparent when it came to drawing and getting proportions right as well as the spacing of my letters when writing. It also affected my fine-motor skills. Things like learning to tie my shoes and riding a bike took me longer because I couldn’t visually grasp how my mom and dad were shaping the laces with their fingers or how to properly steer a bike to keep it from veering off the sidewalk. I also had trouble knowing the proper amount of personal space to give people. This made people very uncomfortable around me and made it hard to make friends. As an adult, NVLD made trying to learn to drive extremely hard. Driving with Turner Syndrome is already tough because of our short stature but NVLD adds in a whole other level of difficulty. It became apparent very quickly that I had absolutely no idea where I was in proximity to other cars on the road. This led to a great deal of anxiety and overall lack of confidence resulting in an over-reliance on my parents to tell me when it was safe to go, turn, merge etc. I began to get frustrated at my lack of confidence and progress, especially since I was taking professional driving lessons on top of practicing with my parents, and wanted so badly to prove to myself and my parents that I could do this by myself. Unfortunately my driving days ended after a bad judgement call resulted in my mom’s car being totaled. Should I have given up on it so quickly? Probably not, but a year later my Crohn’s diagnosis took over our lives and I felt that the anxiety and stress of trying to get my license wouldn’t be the best for my health. Although I sometimes feel like failure for not learning to drive, I know that recognizing my limitations and prioritizing my health and safety was the right decision.

Trouble with Higher-Order Comprehension probably didn’t affect me much until I was older. In the article by Caroline Miller at childmind.org, she defines Higher-Order Comprehension as this:

“the ability to identify the main idea in something, the details that support the main idea, and the relationships among them”

Caroline Miller, What is Non-Verbal Learning Disorder? childmind.org

In other words, I struggle with sorting out which details are important and which are not. This affected me with note taking in High School and College as well as doing research for papers. Miller expands on this in her article by saying:

“Bezsylko observed that some kids essentially take down everything the teacher says because they don’t know what’s important and what not to take down. Other kids don’t know what’s important so they take down nothing, and people think they aren’t paying attention. Or they take down all the wrong things.”

Caroline Miller, What is Non-Verbal Learning Disorder?, childmind.org

I was definitely more in the first category described but definitely fell into each of them at different times. Now that I’m out of school, this part of NVLD (and my family and friends can attest to this) comes out more when I’m trying to tell a story from my day (aka. I take forever to get to the point).

Part of the reason many girls with TS struggle with social anxiety is because of how hard we find it to read social situations. NVLD often causes us problems with interpreting facial expressions or subtle social cues and responding appropriately. We are prone to interpret and respond to things more literally and on the flip-side require more literal or verbal rather than subtle social instruction. As such, reading social situations in the moment is difficult and we tend to respond based on past experience rather than picking up on present cues. For me personally, I find interacting in smaller groups or one on one way easier because there aren’t so many social cues for me to have to sort through and respond to and I’m sure many of my TS sisters will agree. I also find new social situations or sudden changes to social plans hard because of the amount of mental energy it takes me and the fact that I don’t know what to expect. There are few things that causes me anxiety more than not feeling prepared!

As I said in my one of my earlier posts, although I did well in school, math was the subject that I struggled with the most. Miller gives a good explanation as to why in her article:

“Many kids with NLD are very good at rote learning, and they are able to do well in math just by memorizing data. But as they get older they struggle to solve more advanced mathematical problems that are based on recognizing concepts and patterns. Even with a problem they’ve seen before, if it’s approached differently or modified slightly, they have trouble recognizing it.”

Caroline Miller, What is Non-Verbal Learning Disorder?, childmind.org

So basically I excelled at memorizing the basic concepts and principals of a unit, but trying to expand on or pick out/recognize and use them within something more complicated like a word problem was my nemesis. That being said, I managed to make it to Grade 11 math only needing a tutor a handful of times.

Executive Functions are simply the set of skills we use to problem solve. As Miller states,

“Most kids with NLD have weaknesses in these organizing and planning functions. For instance they struggle with breaking down a project into smaller pieces, or conceiving steps that need to be taken to get something done.”

Caroline Miller, What is Non-Verbal Learning Disorder?, childmind.org

For me personally, I would simply describe this as an overwhelming feeling of not knowing where to start with something, whether it be a paper in High School and College, a mess at home that needs cleaning (which is probably why I like to keep my room so neat in order to prevent the mess from pushing me into shut-down mode), or a set of tasks at my job. This is why I love lists and calendars. Unless I have it clearly stated or outlined what needs to be done first, I begin to panic causing my brain to shut off and me to procrastinate to avoid this feeling. This area of NVLD also affects my ability to be as innovative or as efficient as I could be. Thankfully my job has given me lots of practice at this and as a result I’ve definitely made some growth in this area.

As you can see, the way and degree to which I’ve been affected in each of these areas has changed as I’ve gotten older and developed various coping mechanisms and ways around them. However, it continues to be one of the biggest ways that Turner Syndrome impacts me from a social standpoint and the part of it that I’m most self-conscious of, especially growing up in family where competency was highly valued. I saw my brothers excel in areas that I didn’t and felt a huge need to prove that I was just as smart even if I didn’t do as well in certain areas as them. Looking to scripture and knowing what God has to say about me has been extremely helpful as I’ve worked to build better self-esteem and accept my differences. Here is what Paul has to say in the book of Corinthians:

“But in fact God has placed the parts in the body, every one of them, just as he wanted them to be. If they were all one part, where would the body be? As it is, there are many parts, but one body. The eye cannot say to the hand, ‘I don’t need you!’ And the head cannot say to the feet, ‘I don’t need you!’ On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has put the body together, giving greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.”

1 Corinthians 12:18-26

Each of us, atypical and neurotypical, have a role to play in the family of God. Those of us who are ‘atypical’ tend to be strong in areas where those who are neurotypical are not and vice versa. This gives us an incredible opportunity to learn from one another and celebrate our different strengths, but I’m finding out that this can only happen if I acknowledge and accept my limitations and embrace the unique person God made me to be. When I do that, I am fully freed up to use my gifts and step into the calling He has given me. So to all my fellow butterflies out there and anybody else struggling with feeling different, know that the world needs you and the unique talents and perspective that you bring and let your light shine.

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