New name and acronym for NVLD: Development Visual Spatial Disorder or DVSD and Chronic Pain, Hypermobility and Neurodivergence

Written By Butterfly Changing

 Good morning. So today's episode will be about chronic pain, hypermobility, and neurodivergence.  Did you know that there is a link between neurodivergence and being hyperbolic?  The first article is titled  "Link Between Neurodiversity and Hypermobility '' from student placement written in March of 2023.  " Neurodivergent people are two times more likely to have  hypermobile joints than neurotypical people.  They also found that hypermobility faced by neurodivergent people is a mediating factor, sorry, mediating factor for associated symptoms of dysautonomia and pain." I didn't know about neurodivergence. There was a connection between neurodivergence and hypermobility until I was talking to one of my friends about it and she noticed that I was  able to do some things that some people don't like. I can  touch my thumb to my wrist on my right  but not on my left hand, which is interesting bending it backwards. I'm pretty flexible too. So I think that was part of it. 

Second article provides a definition of hypermobility. "Hypermobility is also linked to stress-sensitive psycho-mechanical disorders, including irritable bowel syndrome, fibromyalgia,  and chronic fatigue, and is also associated with hypersensitivity to nociceptive stimuli." so, I'm trying to see if there's a connection between hypermobility and chronic pain  in this, because I have no idea. I'm also neurodivergent. So I thought that could be an interesting episode  topic. There's not that much out there on it, but what I did find was pretty interesting in terms of connecting the two to each other and seeing how they're related and why they're related as well.  My voice sounds kind of weird. That's because I'm getting over a cold. So bear with me with this, please.

So the third article is a video on a study that "the University of Suffolk" in the UK did on hypermobility and neurodivergence. I'll include the link for that video.  The last article is the link between neurodiversity plus chronic pain written by Dina Salman.  "Neurodiversity and pain. Neurodivergent women are more likely to present with chronic pain issues. A study followed 100 women with a neurospectrum diagnosis over the course of 16 to 19 years to investigate  quality of life and pain. 76 percent of the women reported chronic pain. Lower back pain was the most common issue impacting 50 percent of the sample size in the entire 30 percent reported abdominal pain. 

But when looking at the group with chronic pain, the number increased to 50%. Both of these frequently reported conditions  are highly correlated with pelvic floor dysfunction. Another recent study looked at the link between hypermobility." Dysfunction and pain in neurodiverse individuals. The result strongly suggested that neurodivergent people are more likely to experience pain due to joint hypermobility.

And I think this is kind of interesting because, you know, I think that for me, with my migraines, which actually have been getting a little bit better in terms of the pain intensity since I've been on Botox and Evep T, which is an IV, excuse me, , and I've also been taking a migraine relief  tea.   I don't drink it as a tea, but I grind it up in a powder form and put it in capsules. 

 And I take about four of those a day, and that seems to help. I'm also on Benadryl for the barometric for other triggers, Meta Titan and Verapamil. Not gonna mention the milligrams of all that because it's different for each patient,  in terms of what is helpful.  I also usually try to take a hot shower at night before I go to bed because that helps with my migraines and a little bit of caffeine helps sometimes , peppermint tea can help and peppermint oil,  ginger can help and what else can help?

Sometimes lavender oil, l and a few If cold isn't a trigger for you like it is for me, you can use ice packs or I usually use heat packs instead cause that helps rather than the cold. Cause that's a trigger for me. And, usually eating helps too cause you don't eat and that makes the migraines worse. And,  let's see what else helps.  I think I'm going to go on to a different topic, actually, because that one was really short. So, I'm going to combine this with the new name for NVLD, which is Development Visual Spatial Disorder, or DVSD is the acronym.  So, have you ever heard of why NVLD isn't in the DSM? 

And why is the name changing to DVSD? developmental visual spatial disorder. Why isn't there one agreed upon definition for NVLD or DVSD? We'll be exploring these topics today. Here's a definition of the DSM from the online therapy company BetterHelp What is the DSM? The DSM is the Diagnostic Statistical Manual of Mental Disorders, or DSM for short, is a tool Mental Health Professionals Use to Diagnose and Clarify Mental Illnesses.

The current definition of a mental illness by the American Psychiatric Association, APA, is "a mental health condition involving changes in motion, thinking, or behavior. A combination of these The most recent edition of the DSM covers nearly 300 medical conditions, including depression, anxiety, post traumatic stress disorder, acute stress disorder, borderline personality disorder, somatic symptom disorder, obsessive compulsive disorder, disorder,  prolonged grief disorder, neurodivergent development, sorry, neurodevelopmental disorders, and disorders can be adverse effects of medication.

And the second article from Mighty blog by Keaton describes their challenges with MDLD at age 26. "I have a learning disability, a few actually, including one you may have never heard of. It is recognized by most neuropsychologists,  and yet it is controversial because it does not exist in DSM 5, nonverbal learning disability, and VLD or NLD. 

The name is often misleading to the average person. One may see the word nonverbal and assume it means that the individual does not speak. This is often quite to the contrary. Those with NVLD can be quite, quite talkative. The reason behind the name is because NVLDers struggle with understanding nonverbal communication, a hallmark of the learning disability.

But who am I to say all of this?" I have learned a lot about nonverbal learning disability this past year because I was diagnosed with this condition not so long ago as a 26 year old. I have joined Facebook groups and read  what I can find online, receiving most of my information firsthand from others who share a diagnosis of NVLD with me. Unfortunately, there is not enough information. out there about NVLD and that is why I have decided to write this. So I think that's good that she was writing that and  that she is saying what her issues are and, or maybe it's he, I'm not sure because it's Caden. So  Basically the name is being changed to Developmental visual spatial disorder because of trying to put into the DSM with a name that makes more sense for the symptoms and can be agreed upon with the definition by professionals and so that it's easier for people to diagnose it.  And they also wanted to when they then built the project was putting it into the DSM for submitting that to review it and being in there as a diagnosis.  They needed some evidence, lab research and experiments. So they decided, well, it'd be better to change the name cause the name's kind of misleading and needing to do that, they can do that and be able to, , collect some data and. be able to describe what DVSD is or MVLD is. So cadence challenges are in the areas of coordination, visual spatial processing, mental health, social challenges, and executive functioning. I have issues in those areas too, like I find it difficult to drive to the, due to the multitasking, slower reflexes, and visual spatial processing.

Balancing my budget or thinking of an abstract big picture, things that are challenging to social challenges  would be reading facial expressions and understanding tone of voice and forms of communication that aren't in person, like texting or emails.  I have executive functioning difficulties too because of trying to plan ahead for the future with chronic pain conditions.

I have a little NLD too. The second article is  from wrongplanet and this quote is from a male in poland posting in this blog about NLD and why the name should be changed:“I think that the name of "nonverbal learning disorder" HAS to be changed and this serious and complex developmental disability (which for me exist as a spectrum, like "classic" autism) should be put in DSM and ICD, but obviously not as a "learning disorder", "specific developmental disorder", but as a "pervasive developmental disability.’”

As a spectrum, like classic autism should be put in the DSM and ICD,  but obviously not as learning disorder specific.  Developmental disorder, but as a pervasive developmental disability,  which makes sense because It  like I was saying the name is misleading and doesn't really help you to find it  The next article is from the NVLD project is titled “NVLD: What is it and Why is it Not in the DSM?”, by Benjamin Meyer, LCSW written in February 26, 2020

Benjamin 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.”

He believes that each person is unique and that We are more than just our labels and diagnosis. And he is a project, 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.

In addition, NVLD is easily misrecognized as other disorders, such as Autism Spectrum Disorder, which also includes social difficulties. However, there are some core differences between NVLD and ASD, including the fact the former does not include deficits in verbal expression, and involves motor difficulties and challenges reading body language rather than stereotyped or repetitive movements (Linell-Olson, 2019). Some children and families with NVLD complain that the services they have received have been geared towards those on the spectrum and therefore did not effectively address their unique needs. Therefore, part of the effort to have NVLD included in the DSM-5 is to help individuals with it to access appropriate care, both in terms of providers’ awareness and insurance reimbursement.”

The last article is titled, “A New Diagnosis for the DSM? By Prudence W. Fisher, Ph.D and Amy Margolis, Ph.D from Beyond Disability '' by Prudence W. Fisher, who has a Ph. D. and Amy Baralogos, who has a Ph. D. from beyond disability. Examining Nonverbal Learning Disorder, posted,  August 28th, 2017, reviewed by Jessica Schreicher.  We'll discuss the steps  the NVLD project needs to take to submit NLD as a diagnosis that belongs in the DSM. "Examining non-verbal learning disorder” Posted August 28, 2017 |  Reviewed by Jessica Schrader. Will discuss the steps the NVLD Project needs to take to submit NLD as a diagnosis that belongs in the DSM: “Adding a new diagnosis to the DSM is no easy task: it is a multi-step, iterative process involving expert review and public comment. It starts with the preparation of a detailed proposal for consideration by the DSM Steering Committee. The necessary first step is to clearly specify the criteria for assigning the disorder, in DSM style. The proposal must then justify the addition of the disorder by laying out the supporting information (evidence) for each of the following:

1. The condition meets the DSM definition of mental disorder.

2. Clinical utility and diagnostic criteria can be reliably used by clinicians.

3. There is substantial clinical value in adding the disorder (that is it will help people that are in need and are currently not being identified or properly treated).

4. Addition of the disorder will not cause harm (a positive benefit-to-harm ratio).

5. The disorder has validity (antecedent, concurrent, and predictive).

6. The disorder is distinct from other DSM diagnoses (is not better conceptualized as a subtype of an existing disorder).”

 So that makes sense because that basically gives you step by step of how to get into the DSM and what you need to do,  and what the NVLD project is doing.  And I wanted to share some songs that I think go with this episode. One is called "Walking Miracles" by Matthew West and the other one by the same author, the same artist, is "Do Something." 

“Walking Miracles” is about the physical disabilities like cancer, being paralyzed, or not being able to talk, overcoming their challenges, and defining all the obstacles the doctors discussed with them and their family members. I look at it through the lens of someone with a learning difference, and being able to overcome the challenges of visual spatial processing,  executive functioning skills, social communication deficits, or understanding abstract and big picture ideas. 

The second by Matthew West is titled "Do Something" and is about the suffering and challenges people in the world experience and how God picked individuals on earth to do something about them rather than.  Me bystanders and do nothing or thinking someone else will do something. I don't really believe in God picking individuals literally, but I do believe in God or spirit showing us or what our calling is.

And I believe mine is to help. Show awareness on individuals of lives of neurodivergence and the challenges we have, and to be the voice for those who don't have one or aren't sure how to speak up, advocate and support themselves. There should be no shame or guilt in being able to do this,  I mean in not being able to do so.

I hope that this episode will help you feel empowered to work on your challenges. Understand why NLD  should be on the DSM and that. And I will include the links for this episode and for the previous topic, which was hypermobility, chronic pain, and NLD.  And this one was  the  name change being to, from NLD to developmental visual disorder. Developmental Visual Spatial Disorder, sorry that's a mouthful,  and why it's not in the DSM, and why it should be. As I wrap up, there are some things I would like to share with you. I do have a website for this podcast. It's called Living with nld.com. I also have a Facebook and Instagram page for this podcast. It's called Living With NLD. I will include the links for those in the description.  In conclusion, I would like to hear from my audience.

If you know individuals with NLD that I could interview for this podcast, please email me at living with nld gmail.com.  What are you interested in learning about NLD? I know I'm not an expert, but I do know I have the living experience of having it.  I would like you to practice journaling about your gifts and differences.

Also see if there's a way that you can make that difference become easier for you to do than originally it was.  Thank you for listening today, and please go to my YouTube channel and subscribe to it. Thank you. Bye.

Butterfly Changing
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