Chronic Pain, Hypermobility, and the New Face of NLD
The link between neurodivergence and physical health challenges is an area ripe for discussion and discovery. This chapter delves into the surprising connection between being neurodivergent and experiencing chronic pain and hypermobility, before shifting focus to the changing landscape of Nonverbal Learning Disability (NLD), including its proposed new name: Developmental Visual-Spatial Disorder (DVSD).
The Connection Between Neurodivergence, Hypermobility, and Chronic Pain
Did you know that there’s a statistical link between being neurodivergent and being hypermobile? An article titled "Link Between Neurodiversity and Hypermobility," written in March 202,3, reported that neurodivergent people are two times more likely to have hypermobile joints than neurotypical people.
This hypermobility—which involves a greater-than-normal range of motion in the joints—is also a mediating factor for associated symptoms of dysautonomia and pain in neurodivergent individuals.
Defining Hypermobility and Associated Conditions
Hypermobility is often linked to a range of stress-sensitive disorders, including:
Irritable Bowel Syndrome (IBS)
Fibromyalgia
Chronic Fatigue
It is also associated with a heightened hypersensitivity to pain stimuli (nociceptive stimuli). For many neurodivergent individuals who also experience chronic pain, this connection suggests a deeper, underlying systemic relationship.
Chronic Pain in Neurodivergent Women
Further research highlights the prevalence of chronic pain, particularly in neurodivergent women. A study following 100 women with a neurospectrum diagnosis over 16 to 19 years found that 76% of the women reported chronic pain.
The most common issues reported were:
Lower back pain: Impacting 50% of the entire sample.
Abdominal pain: Reported by 30% of the total sample, which increased to 50% when only looking at the group with chronic pain.
Both of these frequently reported conditions are highly correlated with pelvic floor dysfunction. These findings strongly suggest that neurodivergent people are more likely to experience pain due to their joint hypermobility.
The Evolution of Nonverbal Learning Disability: Introducing DVSD
The second part of this chapter explores a major shift in how the Nonverbal Learning Disability (NLD) community is seeking recognition and a more accurate name for the condition.
The Challenge of the Name and DSM Inclusion
The term Nonverbal Learning Disability (NLD or NBLD) has long been recognized by most neuropsychologists, yet it remains controversial because it does not exist in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5). The name itself is often misleading; individuals with NLD can be quite talkative. The "nonverbal" in the name refers to the struggle with understanding nonverbal communication—such as body language, facial expressions, and tone of voice—a hallmark of the learning disability.
The process of adding a new diagnosis to the DSM is a multi-step, iterative process that requires a clear, agreed-upon definition and substantial evidence. One of the reasons NLD has not been included is the lack of a single, consensus-driven definition, other than the fact that it involves visual-spatial deficits.
The Proposed Change to Developmental Visual-Spatial Disorder (DVSD)
The name NLD is in the process of being changed to Developmental Visual-Spatial Disorder (DVSD). This change is being advocated for by groups like the NBLD Project as a strategic move to:
Use a name that better reflects the core symptoms and is less misleading than "nonverbal."
Create a clear, agreed-upon definition that can be used by professionals for diagnosis.
Facilitate the collection of data and lab research needed to meet the strict criteria for inclusion in the DSM.
The symptoms associated with NLD/DVSD often manifest as challenges in areas such as:
Coordination
Visual-spatial processing (which can impact activities like driving)
Social challenges (reading expressions, understanding tone)
Executive functioning (planning, abstract thinking, budgeting)
Distinguishing DVSD/NLD from ASD
One of the hurdles in gaining DSM inclusion is the need to distinguish DVSD/NLD from other similar diagnoses, such as Autism Spectrum Disorder (ASD), which also includes social difficulties. However, core differences exist:
NLD/DVSD does not include deficits in verbal expression.
It involves difficulties reading body language rather than the stereotyped or repetitive movements often seen in ASD.
Inclusion in the DSM is vital. It would help individuals with NLD/DVSD access appropriate care that is tailored to their unique needs—as opposed to being misclassified or receiving care geared towards the Autism Spectrum—and would assist with insurance reimbursement.
The Path to DSM Inclusion
Adding a new diagnosis to the DSM is no easy task. The proposal must justify the addition by meeting several strict criteria, including:
The condition must meet the DSM definition of a mental disorder.
The diagnostic criteria must be clinically reliable for use by practitioners.
There must be essential clinical value in adding the disorder—it must help people currently not being identified or properly treated.
The addition must have a positive benefit-to-harm ratio.
The disorder must have validity (antecedent, concurrent, and predictive).
The disorder must be distinct from other existing DSM diagnoses.
The push to define and rename NLD as Developmental Visual-Spatial Disorder is an active effort to meet these criteria, ensure proper identification, and secure the necessary support and resources for those living with the condition.
Reflecting on Resilience and Advocacy
The challenges faced by those with neurodivergence and accompanying conditions like chronic pain are real, yet the ability to overcome these obstacles is a testament to incredible resilience. This journey of advocacy—whether for personal support or for formal recognition of a condition like NLD—is about being a "walking miracle," defying the limitations and difficulties presented.
For anyone who feels alone or unsupported, the work being done to bring awareness to neurodivergence and its associated challenges serves as a powerful call to "do something." This means speaking up, advocating for your needs, and supporting others who may not yet have a voice or the clarity to speak up for themselves. There should be no shame or guilt in acknowledging the need for support or in working to make a difference easier to manage.
This work empowers individuals to understand their challenges and to work towards a future where conditions like DVSD are fully recognized, defined, and treated appropriately.
