The link between neurodiversity + chronic pain
And how to support neurodiversity in pelvic health
I’ve got a type.
I mean a type of client.
It sometimes feels like there’s an invisible lighthouse guiding these folks in my direction.
They initially seek out a pelvic health evaluation because of pain - pain with sex, bladder spasms, pelvic pain, hip pain, or lower back pain
These clients are
highly intelligent. creative. thoughtful. analytical women or nonbinary people
commonly holding diagnoses of Autism Spectrum Disorder (ASD), Attention Deficit Disorder (ADD), and/or Attention Deficit Hyperactive Disorder (ADHD)
who are disconnected from their bodies and experience some level of chronic pain.
mostly between the ages of 22-30 years old
Very specific, I know.
It’s important to also share that I live in a city where there are 35 colleges nearby with two of them being ivy league universities. It’s also a hub of biotechnology and medicine. So I recognize that the group of people might be skewed because of the location demographics.
Client after client I realized there is a gap in healthcare and wellness not discussed enough.
Neurodiversity
Neurodiversity is a phrase to describe the idea that people experience and interact with the world in different ways and that there is no one “right” way of thinking and learning.
Women in particular seem to fall between the cracks when it comes to obtaining a neurodiverse diagnosis. They are often misdiagnosed with anxiety or other mental health issues. This occurs for numerous reasons. (Failla, 2020)
Not enough studies on females and neurodiversity - when searching for research based articles, most of them are only a few years old and some of them were the first of their kind
The studies that are out there have found that females with ADD/ADHD present with different symptoms then males - characterized with less impulsive and hyperactive traits - and more inattentive traits such as scattered, disorganized, or forgetful with increased likelihood of anxiety and low self-esteem, and more likely to report somatic complaints.
Intelligent people tend to develop compensation strategies that may put their diagnosis under the radar. Women are not getting diagnosed until later in life (often times not until major life events such as working full time, pregnancy, or postpartum), well passed school age the way many male counterparts do.
Neurodiversity & Pain
Neurodivergent women are more likely to present with chronic pain issues. (Asztély et al, 2019). A study followed 100 women with a neuro-spectrum diagnosis over the course of 16-19 years to investigate quality of life and pain. 76% of those women reported chronic pain. Lower back pain was the most common issue, impacting about 50% of the sample size. In the entire group 30% reported abdominal pain, but when looking at the group with chronic pain that number increased to 50%. Both of these frequently reported conditions are also highly correlated with pelvic floor dysfunction.
Another recent study (Csecs et al, 2022) looked at the link between hypermobility, autonomic dysfunction & pain in neurodiverse individuals. The results strongly suggested that neurodivergent people are more likely to experience pain due to joint hypermobility.
Joint hypermobility is described as the ability to move joints beyond its “normal” limits, usually as a consequence as ligament laxity. When hypermobility is associated with other symptoms, typically pain and other autonomic dysfunction, a diagnosis of hypermobility spectrum disorder or Ehlers Danlos Syndrome (EDS) may be made. These conditions are complex, impacting well beyond the musculoskeletal system including gastrointestinal difficulties, fatigue, pain syndromes, and gynecological and obstetric problems.
When comparing non-neurodivergent and neurdivergent groups, the neurodivergent group revealed elevated levels of 50% with hypermobility compared to 20% in the general population.
The study asserted that hypermobility is the strong link between neurodivergence and pain.
This realization brought my entire career full circle:
The low tone babies I worked with in Early Intervention
grew up to be the floppy kiddos with coordination issues I treated in the pediatric outpatient clinic
who then became the hypermobile adults I now see who experience pelvic pain.
4 Ways to Support Neurodiversity in Pelvic Health
Multi-Sensory Approaches to Learning
Clinicians: There’s a lot of information provided in an appointment about a topic that is new to most. Then add in the internal processing of movement and manual therapies. As therapists, we underestimate how much information is being dealt in a single session. All clients, but especially those who are neurodivergent, highly benefit from a multi-sensory approach.
Videos, handouts, using tactile feedback for muscle activation, or drawing attention to different sensations that come up in the body are all great strategies to help embody the work done in-session into real life.
Clients: ask for printed/digital materials, videos for exercises, take notes or ask your therapist if you can audio record parts of the session, ask for support to help brainstorm ideas for integrating good bladder/bowel habits or your home exercise program into daily life.
Creating Opportunities for Empowerment, Awareness, and Connection
Clinicians: Most of these folks are the professional on their pain, but are often disconnected from their bodies. Clinicians can help to support these clients by increasing connections of their pain symptoms to their neurodivergent diagnoses as well as stress responses. I recommend collaborating when it comes to task analysis and everyday habits that may be contributing to pain.
Offering choices during sessions, giving the clients control, and providing clear expectations of sessions can help ground and organize the person so they know what to expect and can get the most out of sessions.
Clients: Don’t hesitate to ask what the goals of therapy are and the plan working towards them! Your therapist can help work with you to establish clear cut goals and stepping stones. If you’re needing something (or actively not interested in) a treatment intervention one day — maybe that means no internal work or requesting something that’s more calming — say so. This a collaborative therapeutic relationship and sharing your needs that day can help to create successful sessions.
I also encourage my clients to put on their detective hat and track their pain over the course of a few weeks to notice patterns. We often look at foods or beverage irritants, stressors, frequent emotions/moods, their cycle, or other factors that can impact symptoms.
Build Interoception
Interoception is the perception of sensations inside the body — heart rate, hunger, needing to void or have a bowel movement, pain, internal temperature, as well as autonomic function related to emotions are all managed through interoception.
Professionals: Developing a more keen sense into understanding the sensations inside the body can better manage stress, anxiety, and pain. Check in with clients during manual therapies, exercises, and other interventions to help them tune into their bodies.
Clients: Here is a practice to start building interoception at home
hold something warm (a warm cup of tea of coffee, heating pad, etc) for 1-2 mins followed by something cold (gold glass of water, ice cube, etc) for the same amount of time.
With the object in hand ask yourself “what does my body feel?” Notice and identify what comes up - how your muscles respond, how it feels in your hands, does it change the way you breathe.
Functional Strengthening
Professionals: Building deep core strength through functional movement can regulate the emotional and sensory system, as well as support hypermobile joints. Good body mechanics, slow progressive muscle loading, and a regular strengthening routine help to improve outcomes.
Clients: integrating pilates and beginner strength training programs 2x/week. Discuss specifics with your physical/occupational therapist.
Understanding health conditions associated with pain is a critical tool. By supporting neurodivergent people, who are more likely to experience chronic pain, we can help people receive appropriate healthcare. Thus, leading to targeted treatments, individualized care, and ultimately improved outcomes for quality of life and independence.
References:
Asztély K, Kopp S, Gillberg C, Waern M, Bergman S. Chronic Pain And Health-Related Quality Of Life In Women With Autism And/Or ADHD: A Prospective Longitudinal Study. J Pain Res. 2019 Oct 18;12:2925-2932. doi: 10.2147/JPR.S212422. PMID: 31695481; PMCID: PMC6804669.
Csecs JLL, Iodice V, Rae CL, Brooke A, Simmons R, Quadt L, Savage GK, Dowell NG, Prowse F, Themelis K, Mathias CJ, Critchley HD and Eccles JA (2022) Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain. Front. Psychiatry 12:786916. doi: 10.3389/fpsyt.2021.786916
Failla MD, Gerdes MB, Williams ZJ, Moore DJ, Cascio CJ. Increased pain sensitivity and pain-related anxiety in individuals with autism. Pain Rep. 2020 Nov 16;5(6):e861. doi: 10.1097/PR9.0000000000000861. PMID: 33235944; PMCID: PMC7676593