Is NLD A Blessing In Disguise?
Interview with Chloe:
Chloe’s answer: My name is Chloe and I’m 17 years old and from Georgia. I got diagnosed with NLD in April of 2022 right before my seventeenth birthday.
My response: I was diagnosed with NVLD at age 19. I went through a series of tests at The Wright Institute to receive my diagnosis.
Chloe: What caused the NLD? “I’m not entirely sure what caused it, but I was born prematurely and was very small then. I have heard that there is a greater risk of developing developmental disorders if you were born prematurely.”
Me: I probably got it from my dad because he was adopted when he was a baby. We don’t know much about his biological family since he was adopted back when the records weren’t kept in good order. I’ve read that it can be genetic or caused by childhood trauma.
How do you feel about having NLD Chloe? “I feel like it’s a blessing in disguise when I first got diagnosed I felt incredibly relieved. I had spent most of my life being confused and frustrated because I knew I was different but didn’t know why. Finally, I had answers. Most of the time it feels like the world is not made for me. And can be cruel to me. But at the same time, I know that it’s a good thing to be different. The world needs all different perspectives and ways of thinking to solve problems. However, many things about NLD are disabling for me.”
So for me I feel that way too because I also felt relieved after my diagnosis. I always knew there was something different about me because I would compare myself to my older brother often and wonder why many things seemed to come naturally to him but not me. After I was diagnosed, all the fog went away and it clicked now I knew why math, writing, and social situations were challenging for me. Just like you stated I finally had answers to that burning hunch and all of the questions inside of me about why I was different.
What differences do you struggle with? “I have a lot of difficulties socializing. Nonverbal cues are as hard for me to understand as Mandarin is for someone who has never heard it before. I had many bad experiences socializing when I was younger. I’ve been bullied and teased for sounding odd or acting strangely. These types of experiences have made me very afraid to speak to people so I stay quiet in person. But if I ever get someone’s email address I will blow it up. I find it easier to communicate through writing or typing something out than to speak because I make a lot of errors due to anxiety when I speak.
Another thing I struggle with is feeling my body in space. I’m so bad at perceiving where things are about me. I have almost gotten run over when crossing the street multiple times. I’m always running into walls and furniture. And I’ll even walk into people pushing shopping carts because my brain just doesn’t properly process visual-spatial information. My mom sometimes holds onto my arm in the stores so I can avoid getting in other people’s way. And because of my very poor visual-spatial skills, I also struggle to draw even simple things. And do anything artistic with my hands. When I was 13 I wanted to be an animator and create my cartoon. It was easy for me to write the storyline because I’ve been a good writer. But it was extremely hard for me to learn how to draw scenes. I was so confused as to why even people that call themselves bad at drawing could eventually get a lot better and I couldn’t. Little did I know I had NLD. I think what also has to do with NLD is that I’m plodding. I’ve always moved to the beat of my drum with walking or moving to place, eating, and everything. It annoys people a lot when I’m slow.
One other thing that’s difficult for me is change. Anything that happens differently from how I expect it to happen can cause a meltdown. I will only write about things that I am interested in or want to write about. When I was in elementary and middle school, I would have a colossal meltdown whenever I had to write an essay. These are extremely difficult for me to write because a lot of the time the topic is so vague and I’m not even interested in it. Since I have ADHD my brain shuts down when I’m faced with something boring. So I have such a low tolerance for unexciting things. Psychology, especially neurodevelopmental disabilities, happens to be one of my special interests. So I could write about it all day. There are a few things I’m interested in.”
I used to struggle with nonverbal cues a lot. And I couldn’t tell when I was talking too much or off-topic. And I couldn’t tell when people were interested in what I was talking about to them because I couldn’t read body language. Now I can read some of it. I do know that when someone leans their shoulders towards you or if they have their feet turned toward your body they are interested in what you are saying. I remember reading that in the book “NLD From The Inside Out” by Michael Bryan Murphy. This is not easy for people with NLD to read because of the vocabulary. But it does have very good information in there about NLD.
I have also had meltdowns because of things changing in my life. I know that sometimes it is difficult for me to turn my emotions off easily when I run into a difficult challenge that is related to NLD. I’m not sure how much of me is as a result of having NLD and how much isn’t. I’m also slow and move as quickly as my mom does. I don’t have good spatial body awareness either. I have gotten into car accidents. I think that is due to my lack of experience with driving and being able to estimate distances well. I recently did episodes on those two topics.
Does your family help you with your challenges or make them worse? “Well my family didn’t know I had NLD. They would tease me in ways I wasn’t comfortable with, it made me feel really bad doing things differently. And sometimes they even said that my odd behaviors were me faking to get attention. But now that they know that I have a disability they’re so accepting, supportive and helpful. They try to do everything they can to make the world a less stressful, overwhelming place for me.”
My family also does everything they can to make my life easier. They don’t know exactly what it’s like to have NLD yet they still do everything they can to be helpful. They can imagine what it’s like to have it when they see how difficult it is for me to do certain things like mental math, drive or understand body language. They treated me differently after my diagnosis because then they had their questions answered too. It was like so many lightbulbs went off all of the sudden. Now they knew why I wasn’t naturally good at math, writing, science with math, and interacting in social situations. I have gotten better at these things too because they have helped me with them. They have taught me shortcuts that helped me do better with math, driving, reading, and understanding body language.
Do you have any other co-occurring conditions, Chloe? “Yes along with NLD I have also been diagnosed with ADHD, prominently an attentive type. Severe anxiety, sensory processing disorder, major depressive disorder, and dyspraxia these things impact me in different ways every day. It’s been overwhelming to me to manage these conditions. But with proper therapy I have started overcoming some of these challenges.”
I haven’t been diagnosed with any co-occurring disabilities at least not to my knowledge or by a professional. My mom thinks I might have Asperger’s also, I’m not sure I agree with her though. I do know it’s hard for me to match drawings of emotions with faces. For example, when I was getting tested for NLD I had a test that played the audio of a conversation. And then I had to try to attentify what emotion the people were experiencing in the conversation. This was hard to do because I couldn’t tell what their emotion was from their tone of voice. I also couldn’t tell which face matched with which emotion. I don’t remember now if the faces were labeled with emotions. I’m pretty sure they weren’t. But don’t count on me because my visual memory is the worst.
Are there any talents or gifts you have from NLD? “Oh yeah, I have plenty of gifts that I think come from NLD. First of all I have an extraordinary memory for conversations, facts about people, certain dates, tunes, tv show transcripts and anything that I can hear. I also have extraordinary hearing and sight. I’m really good at reading, and writing. I started reading when I was two years old. I started writing countless stories about magical things when I was four. Another gift I have is being observant. I have always been so focused on small details, so much so that I miss the overarching theme of things most of the time. Also I’m really good at planning things, making lists or schedules. Because of my rigidity I have a high need for structure.”
That all makes sense to me because I have some of those gifts too. My parents told me I started to talk when I was four, read and write at 4 and a half. I did have challenges with handwriting. I couldn’t hold a pencil well so they had to get bigger and longer ones for me. It was difficult for me to write and read cursive. I do have a really good auditory and verbal memory. I am also really good at remembering people’s names, birthdays, and faces. I do tend to focus more on the granular details and sometimes too much. I also like to do creative writing but not academic writing because then you can’t choose the prompt.
Is there something you wish the world would know about people with NVLD? “We aren’t emotionally disturbed. We aren’t mentally challenged. We aren’t dumb,incompetent or crazy. Our brains are just wired differently which means we experience the world in a whole new way. And we have beautiful souls. We have our own special smartness. If you get to know us I promise you that we will be some of the most responsible, honest, caring, giving and innocent people you have ever met.”
I agree with you there’s nothing crazy about us. Our brains are only wired differently from neurotypical ones. Consequently we do experience everything differently than neurotypical people do. And that makes us who we are. We’re definitely good, honest, caring, giving and innocent people. Neurotypicals are the ones that don’t have a learning challenge and have a brain that is wired the “normal” way. They don’t usually have all the challenges that we NVLDers have, at least not to the same degree as us.
Do you ever wish you didn’t have NLD, Chloe? “Nope I never want to change despite all my challenges. I love oddities and all. By the way it’s not neurodiverse people that should have to change, that’s never the case. It's the rest of the world, who should open their eyes and sympathize with people that have different needs. And try to help us navigate this weird world as much as possible.”
I agree with you. I don’t want to change either because it makes me who I am. I am neurodiverse and I love it. I love myself too. I haven’t always thought NLD was a blessing in disguise. Because it has made things in life challenging for me. Yet it has also made me become a really unbreakable and an emotionally strong cookie. I love challenging myself and don’t back down from doing it. I keep trying to solve a challenge in any way I can until I solve it. I love that about myself.
Do you ever feel like NLD is a burden? “Yes, I feel like I have sometimes been a burden to others because I have additional needs and developmental delays. I depend on adults a lot to help me. Even to this day I'm still babied when I'm around older people because they see how easily led and innocent I am so they try to protect me.”
I can understand why they do that and feel sorry for you for being on the receiving end as well. I do feel like it’s a burden to others sometimes because they have to do extra work to help me with things that don’t come naturally to me. I don’t automatically know how to be empathetic towards others because I have a brain that is wired differently. But I still try to be empathetic towards them, especially my friends and family. I also am trying to be aware of my surroundings to see if I can help my friends and family more often and automatically without them asking. I am getting better at apologizing for when I have a negative tone or checking back in with my parents after having a negative conversation with them. I do want to know how they’re feeling. I also am telling myself when to shut up and be quiet so someone else can have the spotlight because I tend to forget to do that.
What would you tell people who suspect they have NLD but aren’t certain? “Try really hard to get a diagnosis by scheduling an appointment with a neuropsychologist to receive testing for learning challenges. Not many professionals know about NLD but you should do as much research as possible about it. And then take your notes with you to the testing appointment. I know from personal experience that self diagnosis is very tempting. But it’s actually damaging because you can start making changes in your life that you think will help. But they might actually make your condition worse. For example, when I started studying psychology at the age of 11 I was almost sure that I as autistic. I had learned everything there was to know about autism. But when I got tested I was diagnosed with NLD. Even though ASD and NLD are very similar there are minor differences that could alter treatment options, so proper diagnosis is key. Because then you can have the tools and accommodations that you need to succeed in daily life.”
I agree with you and I would encourage them to get tested for learning challenges. I am doing this podcast because I know not many people know about NLD. I want others to not feel alone and like they are the only ones with a brain that is wired differently. I didn’t realize though that I would be helping others until I got feedback from my family and friends. I hope I will be able to continue to spread NLD awareness because it is very important to me. I have noticed that I have been going over all the challenges that I have overcome with NLD. because I want to inspire others who have NLD to do the same thing if they haven’t already done so. It’s like I'm making an autobiography about myself and other NVLDers. And how it affects our lives. It is an easier version of a book for me because it’s all auditory and verbal which are my strengths.
What is your proudest accomplishment? “One of my most proud accomplishments is, if you can even call it that. I Am taking care of and looking after my younger cousin who is on the ASD. When we were young, we started to spend summers together with our grandparents. And over the years we got really close. I’m proud of the fact that I helped him do certain things even though I didn’t have to. Because our grandparents and his parents were there too. I taught him many things and we had lots of fun. He even helped me out with some of my difficulties once in a while. I can consider myself a very helpful and generous person because of this.”
Well I would definitely consider that an accomplishment to be proud of. I would be graduating from UC Berkeley, even though this happened more than two years ago. I’m still amazed at the fact that I did it. I wouldn’t have applied if my older brother hadn’t encouraged me to do so. I didn’t think I was going to get accepted. But I did. I was so excited when I read my acceptance letter online that I had to read it twice to believe what I was reading. I even got goosebumps.
I wouldn’t have graduated without the support from my mom with my sociology classes for the last two years of college. She helped me with proofreading all of my essays. Since I was a sociology major every assignment I had was an essay whether it was only a paragraph or pages long. I also had help from my GSI Alex who I had in my social theory classes for my junior and senior years of college. He was very helpful whenever I needed it. We had many office hours sessions together going over essays, or tough readings. He also let me bring my dog, Truffles whenever we met. My brother also helped me throughout college. Since he also had attended UC Berkeley he knew how difficult all the classes were. He assisted me with one of my math classes and with my personal finance one. My graduation from UC Berkeley was a family effort my dad pitched in too. He would fix my mom's dinner when she would be exhausted from helping me. My dog was with me for the last year and half with college. She helped me survive college because of stress and homesickness. Everyone in my family helped out in their own way.
