Author: Bex Rose, LMHC
February 15, 2024
The internal conflicts of our inner minds keep on keeping on. As we round the metaphorical corner for Neurodiversity visibility, it is important to note that within this article series: “Divergent Diversity” we will continue to discuss different neurodivergent conditions and their impact as it relates to the human right to equality of care.
Ironically, in true checklist style, we approach the quiet but salient Obsessive-Compulsive Disorder (OCD). With candor, I can say that OCD lives somewhat of a double-life. This is due largely to its appearances in mainstream media, inaccurate portrayals and overestimating associations. In actuality, although there are treatment options for OCD, it is not something to take lightly.
According to the International OCD Foundation (IOCDF), almost 3 million adults, and 1.5 million youth in the U.S. alone actively struggle with this condition (IOCDF, 2024). That’s a heck of a number when you also take a gander at the fact that 9 out of 10 times, people with OCD have co-occurring disorders. Imagine getting diagnosed with OCD just to find out you have its ‘cousins’ who frequently show up; such as, Tourettes Syndrome/Tics and Attention-Deficit Hyperactivity Disorder (ADHD).
When thinking of OCD, the first thought that typically comes to one’s mind may be someone who excessively hand-washes, is neurotic, or my personal favorite: when someone makes light of it by saying, “I’m so OCD.” If you conjured up any of these images with ease do not find it surprising. What is important is to understand that OCD is not as simple as all that. It’s actually categorized by two things: “obsessions” and “compulsions.”
For simplicity, obsessions refer to the way in which anxiety hijacks us to fixate on situations that are not always the most logical or rational. For instance, “If I leave the house today, it will catch on fire from the stove” – This could be with someone who hasn’t even touched a stove in a year and yet this will replay and be fixated on until something relieves it.
Compulsions are the mental health “Anti-Acid” OCD takes for an upset stomach; in this case, obsessions. Compulsions are the rituals, actions, or behaviors that are completed to regulate or relieve anxiety. – That same person who is afraid of the house catching fire will maybe drink 3 cups of water and check the windows by the door 5 times before leaving their home.
As a mental health professional with Tourette Syndrome and OCD, I can speak directly to how these two simultaneously can cause an imbalance. Even being fully aware cannot stop these two things from occurring completely. It’s still the sensation of thinking my television will blow up, but somehow checking the lock on my door 3 times rectifies that. Ghastly, when you think of needing to catch a train or bus to work. In fact, according to Zauderer, a professional from Cross River Therapy, 90% of individuals with OCD alone, will experience symptoms like these their entire lives (Zauderer, 2023).
According to the National Comorbidity Survey Replication (NCS-R) conducted in 2001-2003, 50.6% of adults had had serious impairment with 34.8% and 14.6% experiencing moderate to mild impairment (NIH, 2024). This does not include the additional impact on their careers and/or jobs and family lives.
This begs the questions, what are the available treatments and how is this impacting our equality to care? The answer is two-fold:
According to the Anxiety and Depression Association of America (ADAA), the average onset age of OCD is 14-19 with one-third of affected adults experiencing their first symptoms in childhood (ADAA, 2024). Not only did it take a long time, similarly to TS to diagnose, but it also has an early onset. For something that has a 90% chance of being lifelong, those numbers don’t sound very comforting. Instead, the focus here is how, once this is observed or diagnosed as a young adult, would you even go about getting treatment covered? Not just for OCD but with the high chance of a co-occurring disorder like Tourettes Syndrome, the bills will pile up relatively quickly.
In the United States, healthcare can be a point of contention and for good reason. Expenses for many medical interventions are quite costly; additionally, we’re talking about behavioral interventions for OCD. These include: Exposure and Response Prevention (ERP), Cognitive Behavioral Therapy (CBT), and/or medications called serotonin reuptake inhibitors (SRI’s) (IOCDF, 2024).
Zauderer published a statistics article on OCD and its prevalence rates. They noted that 50-85% of people report experiencing moderate to severe impairment; additionally, only 10% are fully cured. With appropriate treatment however, according to Zaurderer, 50% report symptom improvement. (Zauderer, 2023).
This is more promising than most other numbers we’ve spoken about; it’s also important to say that OCD is considered to be a disability due to its impact on daily functioning. As noted in our prior article, the Americans with Disabilities Act (ADA) does not have a term for “neurodivergent”, or in this case “OCD” specifically; however, a definition is provided:
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).
OCD can absolutely impact many activities but the accessibility to this is the concern as it needs to be proven before you can obtain any benefit for disability by the Social Security Administration (SSA). Although a silver lining is the Mental Health Parity and Addiction Equity Act (MHPAEA), it only refers to having less restrictions but does not guarantee access for all income classes (CMS, 2023). One could only hope that by providing more visibility and realistic depictions then this can begin to be addressed more earnestly.
Mental Health Parity and Addiction Equity Act (MHPAEA) – this act speaks to insurance having less restrictions on medical benefits - this has not been followed up on since 2014 (CMS, 2023).
In considering this, we’ve answered both what the available interventions are as well as the impact on our equality of care. Speaking to the consistent lack of visibility for OCD among many other neurodivergent disorders covered and soon to be addressed in this series, there is one thing left to do: Education. Educate anyone who has either never been exposed to neurodivergence or the term of OCD, and rectify a flippant remark or comment when you have a chance to. Seemingly small but crucial, this helps begin to challenge the plethora of poor examples used in many on-air, off-air conversations in the media and even within your own home and community. As always, if we can name it and create awareness around this, overall visibility and accessibility to care becomes more feasible.
Glossary
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.
CBT Therapy: Cognitive behavioral therapy (CBT) is a form of psychological treatment that has been demonstrated to be effective for a range of problems including depression, anxiety disorders, alcohol and drug use problems, marital problems, eating disorders, and severe mental illness.
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.
ERP: Exposure and Response Prevention therapy is a behavioral therapy that gradually exposes people to situations designed to provoke a person's obsessions in a safe environment. A hallmark of ERP is that is doesn't completely remove distressing situations and thoughts.
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.
SRI/SSRI’s: Selective serotonin reuptake inhibitors (SSRIs) are a widely used type of antidepressant medication. They're mainly prescribed to treat depression, particularly persistent or severe cases, and are often used in combination with a talking therapy such as cognitive behavioral therapy (CBT).
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.
TS: Tourette Syndrome: 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.
References
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
ADAA. (2024, January 13). Facts & Statistics: Anxiety and Depression Association of America, ADAA. Facts & Statistics | Anxiety and Depression Association of America, ADAA. https://adaa.org/understanding-anxiety/facts-statistics
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
IOCDF, international O. foundation. (2024). “I’m SOOOO OCD” - international OCD foundation - Common Myths About Obsessive Compulsive Disorder. International OCD foundation. https://iocdf.org/wp-content/uploads/2014/10/OCDMyth-Handout-092313.pdf
IOCDF. (2024). Obsessions what is OCD? - iocdf.org. International OCD Foundation. https://iocdf.org/wp-content/uploads/2021/01/What-Is-OCD-Brochure-1.pdf
NIH. (2024, January 13). Obsessive-compulsive disorder (OCD). National Institute of Mental Health. https://www.nimh.nih.gov/health/statistics/obsessive-compulsive-disorder-ocd
SSA. (2024, January 13). Social Security Disability Benefits. Social Security Disability Benefits. https://www.ssa.gov/benefits/disability/
Zauderer, S. (2023, January 11). 57+ OCD statistics: How many people have OCD?. Life-Changing ABA Therapy - Cross River Therapy. https://www.crossrivertherapy.com/ocd-statistics#:~:text=People%20Have%20OCD%3F-,OCD%20affects%202.5%20million%20adults%20or%201.2%25%20of%20the%20U.S.,are%2019%2Dyears%2Dold.