Author: Bex Rose, LMHC
May 16, 2024
In true neurodivergent fashion, we have systematically arrived at one of the more popular neurodivergent disorders: ADHD or in long-hand Attention-Deficit Hyperactivity Disorder. We have touched upon this in the articles thus far, today it will shine. Within this article series “Divergent Diversity”, we reflect upon different neurodivergent conditions and their impact as it relates to the human right to equality of care.
Although ADHD is the first thing that comes to mind when one discusses neurodiversity, it is ironically one of the least understood. In purposefully waiting a few issues in to speak to this, I hope to shed some light on this lovely hero | martyr phenom. Hopefully we can use some of the disorders we’ve referenced in the past to further build on this ADHD piece.
When saying aloud the acronym ADHD, you will often get one or two nods from others' heads in approval or in solidarity. This is not to say that everyone knows of it, or has it for that matter; it is to say that the disorder has become more mainstream than others. At present, although a lot of research in neurodivergence is centered around our younger humans of ages 6-17 years, I will focus on my fellow adults, colleagues, and professionals with neurodivergence. The reason for this is twofold: (1) to promote the visibility that neurodivergence does not go away as you unveil new levels of age. In fact, there are less resources for adults and elderly populations for ADHD whereas this often impacts their lives in a multitude of ways. (2) It's actually quite eerie, adulthood is often hard enough without the invisible struggle-bus that is time blindness, time management, and overstimulation adults suffer from.
According to a National Comorbidity Survey Replication (NCS-R) survey conducted by Harvard University (Kessler, et al, 2001), the estimated lifetime stats point to adults with ages ranging from 18-44 years having a rate of 8.1%. That is noteworthy considering the fact we are still learning about ADHD and neurotypical minds and many adults go undiagnosed for years, if ever. Now pair that with the fact that even as visibility continues to increase, there are no explicit definitions pointing to ADHD when it, in fact, creates a multitude of barriers for everyday living. As a large detriment to our right to equality of care, I find this quite staggering.
Before diving into all the barriers, let's first touch on some basics of ADHD. According to the Attention Deficit Disorder Association (ADDA), ADHD is highly genetic, meaning we don’t get to choose this right out of the gate. It has a lifetime prevalence, meaning we may very well have it as a lifetime companion. I consider ADHD to be the trick-or-treat of neurodivergence as it has all kinds of symptoms and you just never know what you’ll get. To name a few that are common:
Stimming which refers similarly to tics but are unconscious movements. Tics also occur which refers to both conscious and unconscious uncontrollable movements. (ADDA, 2023).
Other common symptoms include time blindness, object permanence, administrative organization and mood swings because understandably so, this condition can often go from 0-100 in frustration, anger or feeling overstimulated. Pairing the frustration of losing sight of a task or leaving an item outside of one’s purview could put anyone on edge. A perfect example of this happens more often than not. Have you ever looked for your phone, called your friend while talking on it for 15-20 minutes, before realizing it was in your hand? Or even leave the keys in the door lock and continue to search for your set until finding it in the door lock. This may sound silly but it happens a lot.
In thinking of all these symptoms, also take into consideration that there are three types of ADHD (at present).
Hyperactive and impulsive: What I like to refer to as the “Daredevil” – we ask for forgiveness before permission. Characterized by being both unwillingly hyperactive in behaviors and impulsive.
Inattentive: The “Alice in Wonderland” – we often don’t end where we started. Characterized by inattention and distractibility. Inattentive-type ADHD is what is often referred to as ADD.
Combined: The “Prodigal” – we always come back to all the symptoms wrapped into one. This is the most prevalent type of ADHD and is characterized by symptoms of inattention and distractibility, in addition to hyperactivity and impulsivity. (ADDA, 2023)
The reason noted for ADHD having a Hero and Martyr complex is due to the fact that everyone knows ADHD by name, it often serves as a floodgate into the neurodiverse realm. Paradoxically, it has become synonymous with the word “neurodivergent” and continues to be seen yet scrutinized and misunderstood at the same time.
According to the Center for Disease Control (CDC), the first recommended line of treatment, behavioral therapy such as Cognitive Behavioral Therapy (CBT), is underused. Only 50% of young children with ADHD in Medicaid and 40% with employer-sponsored insurance got psychological services in the U.S. (CDC, 2023). The federal government offers ways to support medication and psychological services, if assessed and diagnosed. However, more often than not, there is a lack of visibility into what the best steps are for parents or adults seeking support.
From a professional standpoint, it’s quite deafening how often adults reach out for support services for symptoms they have had for most of their lives being either dismissed or being ostracized for it. Can we blame them when the first line of treatment is often completely missed? On top of that, it’s not easy for providers to assess the symptoms, as these do not present the exact same way. This was termed so appropriately as an issue of neurodiversity and the “tourism” that has begun to accompany it (Jepson, et al. 2023). According to Jepson, not only is there great concern over how the government is treating neurodiversity and disability, but with the lack of overall knowledge in creating an agenda of responsibility and accountability when doing so. The truth is, there are neurotypical and non-neurotypical humans in society. It is often necessary for neurotypical humans, such as this writer, to assimilate in order to appease the process of paying bills, working jobs, and forms of expression in social situations.
I highly doubt anyone should be expected to know right off the bat how to assess the symptoms you experience, depending on age, the type of ADHD you may have, and rule out one or more co-occurring conditions. It’s quite a lot and yet NONE of this is actually taken into consideration when looking at our disability acts and treatment services within states.
As noted in each article in this series, the Americans with Disabilities Act (ADA) does not have a term for “neurodivergent”, or in this case “neurotypical” or even “ADHD” respectively. Fret not for this amusing 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).
ADHD specifically impacts the ability to complete many activities in early and later life. A study done with teachers within a school setting and the use of “fidgets” is also just a small blip on the radar. That is, how do we even begin to teach about neurotypical conditions when we are struggling with addressing some of the symptoms in classrooms? In a study conducted by Mugavero, not only was there an overall lack of understanding in how to address behaviors associated with ADHD symptoms in the classroom. Additionally, it was clear that providers also did not know how to address ADHD in the classroom period (Mugavero, 2022). This makes the need to increase visibility all the more important. It also indicates the hero complex noted above. Many will throw the word ADHD out without understanding what it really implies or what is needed to support it. In naming ADHD appropriately, we may then begin to fundamentally understand the importance of how neurotypical humans can be more integrated into society. This hopefully allows more integration and positive representation among our policymakers, in healthcare acts, and most importantly, in how we are treated in our equal right to care.
I will not ever dismiss the band-aid that is the Mental Health Parity and Addiction Equity Act (MHPAEA). Valiant in effort, this act only refers to having less insurance restrictions but does not guarantee access for all income classes (CMS, 2023). That’s only the tip of the iceberg when it's hard to even identify what kind of coverage to fight for without understanding the symptoms, type, and all-around impact ADHD may be having on you or your children’s day to day.
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).
According to Guo, in 2013, 1.4 million children aged 2 - 17 years were enrolled in New York State Medicaid. 5.4% of this cohort were identified to have ADHD but less than 40% were treated effectively for it (Guo, et al. 2021). This further highlights how ADHD is quite under-treated, over diagnosed, and over medicated.
After all this is said, how can we move forward? Aside from continued encouragement to providers to impact policy relating to medical coverage, advocacy is going to be the make-or-break for visibility. While it is the start of how we reframe the idea of neurotypical humans and how disability is created from it, in no way is it the definition of it... As always, if we can name it in its most authentic way and validate it, we can indeed allow ADHD’s hero complex to shine instead of becoming the martyr it has shaped up to be.
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.
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.
Neurotypical: Not displaying or characterized by autistic or other neurologically atypical patterns of thought or behavior.
Object Permanence: The understanding that objects continue to exist despite being out of sight.
Stimming: Behavior by repeating certain sounds and movements unconsciously
Tic: A tic is an uncontrolled sudden, repetitive movement or sound that can be hard to control.
Time Blindness: Struggling to estimate how much time has passed or complete activities within a certain amount of time. This time blindness may even extend to one’s memory.
Sources
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
ADDA. (2023, January 11). ADHD: The facts. ADDA - Attention Deficit Disorder Association. https://add.org/adhd-facts/#adhd-statistics
CDC. (2023, September 14). Vital signs: ADHD in young children. Centers for Disease Control and Prevention. https://archive.cdc.gov/www_cdc_gov/vitalsigns/adhd/index.html
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
Danielson, M. L., Bitsko, R. H., Ghandour, R. M., Holbrook, J. R., Kogan, M. D., & Blumberg, S. J. (2018, January 24). Prevalence of Parent-Reported ADHD Diagnosis and Associated Treatment Among U.S. Children and Adolescents, 2016. Taylor & Francis Online. https://www.researchgate.net/publication/232173635_httpwwwtandfonlinecomdoiabs101080009140390909763
Guo, L., Danielson, M., Cogan, L., Hines, L., & Armour, B. (2021). Treatment Patterns and Costs Among Children Aged 2 to 17 Years with ADHD in New York State Medicaid in 2013. Journal of Attention Disorders, 25(4), 463-472. https://doi.org/10.1177/1087054718816176
Jepson, A., Stadler, R., & Garrod, B. (2023b, July 13). Tourism and neurodiversity: A problematisation ... Taylor & Francis Online. https://www.tandfonline.com/doi/full/10.1080/13683500.2023.2233040
Kessler, R. C., Berglund, P., Chiu, W. T., Demler, O., Heeringa, S., Hiripi, E., Jin, R., Pennell, B.-E., Walters, E. E., Zaslavsky, A., & Zheng, H. (2024, April 21). The US National Comorbidity Survey Replication (NCS-R): Design and field procedures. International journal of methods in psychiatric research. https://pubmed.ncbi.nlm.nih.gov/15297905/
Megaera, S., Skuthan, A., & Christopher, K. (2022, October 22). Fidgets and Attention Deficit Hyperactivity Disorder: Teacher Perceptions. tandfonline. https://www.tandfonline.com/doi/abs/10.1080/17446651.2023.2187779
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