Author: Bex Rose, LMHC
December 14, 2023
As we continue to fight that good fight and rally our respective causes in mental health and Neurodiversity visibility, we will visit different neurodivergent conditions and their impact throughout this article series: “Divergent Diversity.” As the name implies, it’s important that we not skim over anything, lest we forget the reason this is being brought up in the first place. One of the more under-diagnosed and pervasive disorders, Tourette Syndrome, will be a focus in the context of how it impacts individuals and how a lack of legal representation impacts human rights including the right to equality of care.
The truth is, Tourette’s Syndrome (TS) and Tic disorders are not among the most common of experiences. They are however quite impactful in both positive and negative ways. First, let’s check in about what this syndrome is and the components that accompany it. TS is considered to be a disorder in which you lack control in repetitive isolated movements throughout your body (also called motor tics) and/or vocal sounds (also known as vocal tics).
The popular stigma of a person uncontrollably cursing is something that can happen; however, this is actually quite uncommon and is just the tip of the iceberg. Levity aside, it’s actually a debilitating and often tedious disorder because it can make simple everyday tasks a nightmare. For example, try putting that carton back in the fridge without wanting to throw it across the room, bang it three times on the table, or just stop moving halfway between the table and fridge because of excessive blinking. All three of these examples are tedious, yes, but amplify that with just about any task. Speaking as a clinician with TS, it can often feel like you have a sequence of doomed interactions for the day. Unfortunately, TS research and support services are still critically underfunded but there are resources, one such being the Tourette Association of America (TAA).
A recent study by the Tourette Association of America (TAA, 2022) found that TS not only impacts children but adults and families in a variety of ways. Additionally, TS is often not alone in your body, it brings with it a few extra bits we call co-occurring disorders. Let’s start with the impact.
According to the Tourette Association of America’s latest survey in 2022 (TAA, 2022), 50% of children and 37% of adults were diagnosed within one year. What’s interesting about the survey is that most adults with TS were not diagnosed until AFTER 10+ years. This is not accounting for the TAA report noting an estimated 50% of individuals are still undiagnosed. Considering this, it’s fair to surmise that this leads to much dissociation, dysfunction and isolation. According to the TAA, 87% of adults reported experiencing physical pain because of their tics with 36% consuming substances to self-medicate with their tics and symptoms.
Having something controlling your body for 10+ years with no clue as to how you can get treatment or even where to begin can be quite daunting. Pair that with the fact that TS is considered a disability yet has no legal underpinnings within the current statute of law and regulation and it becomes a war of invisible visibility. The Americans with Disabilities Act (ADA) does not even have the term “neurodivergent” in its definition when speaking about disabilities.
ADA defines disability as: “a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.” (ADA, 2020).
Clearly, TS would fit this definition in many ways, yet the financial burden impacts not only adults and children, but the families who are fortunate enough to get diagnosed within the initial year that symptoms arise. According to the TAA, 43% of surveyors answered that managing their children’s tics caused financial strain on the whole family. Additionally, from childhood to adulthood, suicidal ideations and self-harm increases from 40% to 58%, unsurprisingly with a large gap between getting diagnosed and finding the appropriate treatment (TAA, 2022).
Clearly meeting the disability definition, we look at how our right to equity is being compromised. Treatment for TS is few and far between. One must ask the question, if TS and/or tics are not included within the definition of the ADA, how does one begin the process of being diagnosed, seeking support and affording long-term care. There is at present no cure for Tourette’s; it is a lifelong affliction and so financial burden also comes with the territory.
According to the Center for Disease Control (CDC), although there is no cure for Tourette’s, there are a few options for treatment throughout a patient’s lifespan. This includes medications, behavioral therapy, and Comprehensive Behavioral Intervention for Tics (CBIT) (CDC, 2023). The CDC also makes a note to say it’s not just the TS that is often the main thing to be treated, there are other factors at play.
To explain, TS and Tic disorders are often accompanied by their co-occurring disorders, or “cousins” as I like to call them. The levity is necessary – trust me – because when you think about this syndrome, it’s thinking about having to share your bandwidth with another unstoppable force. Co-occurring disorders include anxiety, depression, Obsessive Compulsive Disorder (OCD) and our favorite, Attention-Deficit Hyperactivity Disorder (ADHD).
According to a study completed by the CDC for TS in 2017, 44% of children have moderate to severe TS. Additionally, 5 in 6 people diagnosed with TS have also been diagnosed with one of the above-mentioned co-occurring disorders; that is 83% (CDC, 2023a). Not to count off all the negatives, but it’s apparent that there are many barriers and support services needed to have a semblance of a functioning role in society, not including the dissonance already created by the lived experience of having something pervasive, incurable, and lifelong.
So where does this leave us? The absolute best thing to possibly come of this series is awareness. Awareness that TS impacts the many age groups throughout the United States, and perhaps globally, and how we can make our way to creating more inclusive laws to satiate our human right to equity and healthcare. The health care needs of TS are not to be taken out of view.
Healthcare for TS ranges in many ways. Assuming you have completed the first step in receiving a diagnosis, now comes the task of having to find a specific treatment regimen that will work for you. TS is not a one-size fits all, and so the healthcare needs can become costly quickly. The CDC even reports no singular medication regimen or clinical intervention that can eliminate or guarantee results for treating TS. According to the impact survey completed by the TAA, 72% of adults with tics reported feeling discriminated against and 42% reported difficulties in treating their co-occurring disorders. Furthermore, children with TS are often the target of bullying with 50% of children feeling discriminated against and 80% being negatively impacted in their experience in school. Pair this all with the fact that there is still no regulation or law defining TS, or even broader, neurodivergence, and it’s clear the impact it has on TS is at risk of growing more (Bitsko et al., 2012).
When finding appropriate healthcare, we want to look at how the diagnosis/condition/disability is being defined, regularly treated if chronic, and what is insurable. As TS is considered a disability, it’s important to note that it is not just physical healthcare needs but also neurological, educational, and psychological. For adults with co-occurring disorders, we must also factor-in a medication regimen; is all of this covered? The answer in short is no, because without an actual definition specific to the impact of neurodivergence like TS, most treatments will be out-of-pocket and costly. For adults, the TAA found that 59% have to take medication for their symptoms of TS with 37% having to miss work due to their tics. Additionally, 28% of families reported struggling with costs of services including some of the healthcare needs of counseling, appointments and tutoring. This begs the question: how can we begin to conceptualize the human right to equity and the way we can address the healthcare needs for those with TS?
According to another study done with children who have TS, children with TS have greater health care needs compared to children without TS (Bitsko et al., 2012). This was in 2012 but in 2023 it seems the numbers are only increasing with over 50% of people still undiagnosed. Additionally, in a meta-analysis conducted by a specialist on the prevalence of TS and Tic Disorder, it was found that these disorders were more common within the special education populations. We see this analysis and make a plea for parents, educators, and health care professionals to ensure proper access to health care (Knight et al., 2012).
There is one act to mention in terms of Equity and Access thus far in the United States:
Centers for Medicare & Medicaid Services (CMS) lists the Mental Health Parity and Addiction Equity Act (MHPAEA) – this act speaks to insurance having less restrictions on medical benefits however this has not been followed up on since 2014 (CMS, 2023). This regulation would be a step in the right direction as well as including TS and neurodivergence into disability definitions.
Regardless, we have just this one disorder to speak of within the world of neurodiversity, none of it can fully be addressed in insurance, or representation without being acknowledged.
It is critical a conversation continues regarding the long-lasting impacts experienced from neurodiverse individuals and the health care needs associated with it. This becomes a human rights concern in the very vein we operate; if we can name, and even create awareness of neurodiversity within the United States alone, that would be a step towards equity in visibility, representation, and overall healthcare.
ADHD: Attention-Deficit Hyperactivity Disorder: Attention-deficit/hyperactivity disorder (ADHD) is marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development.
CBIT Therapy (Comprehensive Behavioral Intervention for Tics): A condition of neurodevelopmental origin that mainly affects the ease with which a person reads, writes, and spells, typically recognized as a specific learning disorder in children.
Co-Occurring: Describes two or more disorders or illnesses occurring in the same person. They can occur at the same time or one after the other.
Motor Tics: Motor tics are movements. Simple motor tics include but are not limited to: eye blinking, facial grimacing, jaw movements, head bobbing/jerking, shoulder shrugging, neck stretching, and arm jerking. Complex motor tics involve multiple muscle groups or combinations of movements and tend to be slower and more purposeful in appearance, (e.g., hopping, twirling, jumping).
Neurodivergence: Differing in mental or neurological function from what is considered typical or normal (frequently used with reference to autistic spectrum disorders); not neurotypical.
"There are some things that neurotypical people just know or can figure out and that neurodivergent students may need to have a model for".
Neurodiversity: Neurodiversity is a word used to explain the unique ways people's brains work.
OCD: Obsessive-compulsive disorder: is a long-lasting disorder in which a person experiences uncontrollable and recurring thoughts (obsessions), engages in repetitive behaviors (compulsions), or both. People with OCD have time-consuming symptoms that can cause significant distress or interfere with daily life.
Tic: A tic is an uncontrolled sudden, repetitive movement or sound that can be hard to control.
Tourette’s A nervous system disorder involving repetitive movements or unwanted sounds. Tourette syndrome starts in childhood. It involves uncontrollable repetitive movements or unwanted sounds (tics), such as repeatedly blinking the eyes, shrugging shoulders, or blurting out offensive words.
Tourette Syndrome (TS): is a neurodevelopmental disorder that affects children, adolescents and adults. The condition is characterized by sudden, involuntary movements and/or sounds called tics. Tics can range from mild/inconsequential to moderate and severe, and are disabling in some cases.
Vocal/Phonic Tics: Vocal (phonic) tics produce a sound. Simple vocal tics include but are not limited to sniffing, throat clearing, grunting, hooting, and shouting. Complex vocal tics are words or phrases that may or may not be recognizable but that consistently occur out of context. In 10-15% of cases, the words may be inappropriate (i.e., swear words, ethnic slurs, or other socially unacceptable words or phrases). This type of vocal tic, called coprolalia, is often portrayed or mocked in the media as a common symptom of TS.
Americans With Disabilities Act (ADA) of 1990, 42 U.S.C. § 12101 et seq. (1990).
Bitsko, R. H., Danielson, M., King, M., Visser, S. N., Scahill, L., & Perou, R. (2012). Health care needs of children with Tourette syndrome. Journal of Child Neurology, 28(12), 1626–1636. https://doi.org/10.1177/0883073812465121
CDC. (2023, May 4). Tourette Syndrome Treatments. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/tourette/treatments.html#:~:text=Although%20there%20is%20no%20cure,do%20not%20need%20any%20treatment.
CDC. (2023a, May 4). Data and statistics on Tourette syndrome. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/tourette/data.html#references
CMS. (n.d.). The Mental Health Parity and Addiction Equity Act (MHPAEA). CMS.gov. https://www.cms.gov/marketplace/private-health-insurance/mental-health-parity-addiction-equity
Knight, T., Steeves, T., Day, L., Lowerison, M., Jette, N., & Pringsheim, T. (2012). Prevalence of TIC disorders: A systematic review and meta-analysis. Pediatric Neurology, 47(2), 77–90. https://doi.org/10.1016/j.pediatrneurol.2012.05.002
Tinker, S. C., Bitsko, R. H., Danielson, M. L., Newsome, K., & Kaminski, J. W. (2022). Estimating the number of people with tourette syndrome and persistent tic disorder in the United States. Psychiatry Research, 314, 114684. https://doi.org/10.1016/j.psychres.2022.114684
Tourette Association of America. (n.d.). 2022 TAA Impact survey - Tourette Association of America. https://tourette.org/wp-content/uploads/2022_TAA_ImpactSurvey_0512b.pdf