Finding Out Why NLD Was On the DSM and Isn’t Now
In today’s podcast, we’ll discuss Finding Out Why NLD Was On the DSM and Isn’t Now (also say what the DSM is). The first article from the NVLD project is titled “Why are we ignored?, by David who in his (quote) “Late fifties, never completed college because of the math deficits. Numerous job failures and relationship challenges persist to this day. I don’t feel like a real grownup because of the limitations NLD imposes on growth and potential. I feel like the smartest dumbass you’ll ever meet.” (end quote)
“I was diagnosed in my fifties, but not with NLD, with a cognitive disorder, NOS. The neuropsychiatrist who tested me said he knew immediately that I had NLD, but since NLD is not recognized by the APA, it was categorized as a cognitive disorder. So why isn’t NLD recognized? If this disability, and that is what NLD is, a disability, has specific symptoms and traits that definitely identify those of us who have it, why isn’t it recognized by the APA? I had a nervous breakdown in the fourth grade because of NLD. Too smart in reading and grammar, too stupid in math, and my parents and teachers concluded I had a character flaw. Decades of failure. Failure in school, in jobs, in relationships. The failure is very real, as are the symptoms. But according to the APA, isn't the NLD a real thing? Expletive deleted, APA.”
I can relate to David because I sometimes feel ignored by Neurtoypicals that don’t know that I have NLD. I can think of one really good example that happened to me recently in March when I was trying to get new eyeglasses. I was trying to be independent with this experience and do better than the previous time because I spent more than I needed to. So I asked my parents and older brother for advice on what questions to ask, how much to spend and what the goal should be.
So once I got my eye exam I went to the Optical Shop intending to look around for various prices not to buy. Let’s call the person who helped me Simon pressured me to buy by making me feel like I couldn’t find the deal or eyeglasses I was going to get anywhere else. He went over the lens options I could get way too fast for someone with NLD and I felt embarrassed to ask him to slow down or ask questions. I also felt nervous.
To make a long story short, when I got home I tried to cancel the order over the phone but it didn’t work because of my credit card. Consequently, I disputed it with my credit card company because I didn’t like how I was being treated by the merchant. They completely understood when I called them and told them that Simon had used words like “I don’t care what Mommy says.” when I was trying to cancel the order. I told him I didn’t appreciate his tone and I talked to him too. And he tried to tell her about our insurance which she is more knowledgeable about than he thought she was, she graciously hung up on him.
I filed a complaint against him. And had a way better 180-degree experience at Costco when I went there. I was respected and got clear and reasonable speed for my questions. I also got treated more fairly and was taught that I can advocate for myself by asking the person to dumb for me not because I’m dumb but because they’re talking too quickly. Put more responsibility on them, not what the Costco clerk said. I definitely won’t go back to Sharp for my eyeglasses.
I felt ignored because my needs weren’t met and disrespected either. I also felt embarrassed, made fun of, nervous and terrible for having NLD after being at Sharp. I hope none of you who are listening have experienced this even if you don’t have an NLD or if you have another LD. Or if you are neurotypical and have been mistreated by someone else. I’m sorry.
The second article from the NVLD project is titled “NVLD: What is it and Why is it Not in the DSM?, by Benjamin Meyer, LCSW who is a “ bilingual psychotherapist and executive functioning coach who specializes in working with young adults with NVLD, and I was inspired by my personal experience to help those I work with to transition to the professional and social demands of adult life. I believe that each person is unique and that we are more than just our labels and diagnosis. I am a Project Social Ambassador for The NVLD Project.”
“There exists some controversy regarding a diagnosis called NVLD (Nonverbal Learning Disorder). It is defined 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. Given that so many people have been classified as having NVLD, why is it not in the DSM? One possible answer was offered by the Colombia psychiatric social work professor, Dr. Prudence Fischer, who acknowledged that there is no agreed-upon definition of NVLD, other than that it involves “visual-spatial deficits” (Burkhardt, 2019). It is also the case that there is considerable variance within the NVLD population regarding how individual strengths and weaknesses manifest, with some individuals exhibiting strong social skills and others struggling with handwriting, for example. However, there is significant evidence that NVLD does exist as a neurological profile, which I will summarize below, as well as speak to the effort to have it included in the DSM.”
For those who don’t know what the DSM is, it is a Diagnostic Statical Manual for Mental Disorders that helps get accommodations for the people that have the learning challenges that are on it. This makes it easier for them if they’re in school or college. It also helps because if your learning challenge is on the DSM people will probably feel like you did not make it up.
I think it’s very important for NLD to be on the DSM because then people who have would hopefully have an easier time with accommodations and having them be met because it would be like “hello, my need is literal and legitimate.” But if there is no agreed definition for NLD then this may make it more difficult for people and organizations that help or work for The NVLD Project to get it on the DSM. But that won’t stop them from doing the important work and research that they do because they want to help people like and families like mine (and many more are out there that need it more than I do). I say that because I’m fortunate to have made my life easier by consistently working at all the challenges that NLD presents and having a really good support system and network to help me face them.
The third article is from Children Resource Group titled “NVLD: To Be or Not to Be Real NVLD” by Sandra Burkhardt, Ph.D., ABPP who is a “Dr. Sandy Burkhardt is a licensed clinical psychologist who specializes in the evaluation and treatment of childhood conditions, including autism spectrum disorders.”
Also says that “This article focuses on the confusing status of Non-verbal Learning Disability (NVLD) relative to formal clinical and educational labels. Is NVLD simply a learning disability? Is it more than a learning disability? Prudence Fisher, Ph.D. is a Research Scientist and Associate Professor at Columbia University in New York. In a recent phone interview, she shared some insights regarding NVLD and how it is diagnosed now and might be diagnosed in the future. Even the acronym for the condition is inconsistent, with some authors using NLD and others using NVLD. This article will use NVLD as the term preferred by Dr. Fisher.”
I agree with the article because the two different acronyms can make it seem like you’re talking about two different things when in reality they’re the same thing. This would make it confusing for the public who doesn’t know that this is true and that NLD and NVLD are the same things. Also, I think NVLD is better than NLD because it brings in the V for Verbal which NLD doesn’t.
I also agree with the following quote “Diagnostic confusions regarding NVLD exist, in part, because professionals in education, psychiatry, psychology, and neuroscience do not agree about this condition.
“Some professionals do not acknowledge NVLD as a condition, preferring to see the performance deficits in a person with good language abilities as motivational, organizational, or attentional deficits. Some see the NVLD deficits as better addressed by existing DSM disorders such as LD, ASD, ADHD, anxiety, and/or developmental coordination disorder. Finally, other professionals view NVLD as a unique diagnostic category that deserves its prominence. These differences in expert opinions have influenced decisions related to the inclusion of NVLD as a formal DSM diagnostic category.”
Because if professionals in education, psychiatry, psychology, and neuroscience can't agree upon what NVLD is a learning challenge then it will make it even more challenging and difficult to argue why it deserves to be on the DSM. It needs to be on there so we can get more help, more easily (hopefully), and be heard and believed that we’re not making this learning challenge up it is real.
So whether it’s trying to explain what the DSM is, what NLD is, why it deserves to be on the DSM, or why we should be ignored, I and others who have NLD experience difficulty in all these areas. Or if you are a professional person who is trying to advocate for why NLD needs to be on the DSM I suspect you also are having challenges in these areas.
As I wrap today I would like to share a few things with you. I would love to know what is the most difficult thing you encounter when trying to find accommodations for NLD? If you're listening on Spotify or somewhere else please shoot me an email at livingwithnld@gmail.com. If you’re listening on livingwithnld.com please leave a comment below the episode. Thank you for listening today. Talk to you next Friday.
Links for articles:
