Author: Bex Rose, LMHC
December 31, 2024
This month, in turning the cornerstone of our neurodivergent journey, we have arrived at our good friend, dyslexia, the reading disorder within the learning disability community that also shares a badge of honor with other neurodivergent conditions. At the start of the semester, I cannot think of a better way to kick off than with a disorder so oversaturated in use yet so often surprisingly misunderstood. As a neurodivergent person, I’d like to share the “411” with not just our fellow neurodivergent folks but our neurotypical counterparts as well.
In Part 5 of the article series Divergent Diversity, which reflects upon different neurodivergent conditions and their impact on the human right to equal care, we will introduce dyslexia and how it is often discussed but remains underdefined.
To begin speaking to how Dyslexia is underdefined, we will define disability per the ADA. In the Americans with Disabilities Act (ADA) (2020), disability is defined 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.”
Dyslexia is not often the first thing that comes to mind when thinking about neurodiversity. Yet, it is a life-long condition that emerges in childhood and will always require treatment, no matter its severity. The documentation of dyslexia dates as far back as the 17th century (Wagner et al., 2020). Currently, according to Rubi E. Luna, M.D. from the UCLA Semel Institute for Neuroscience and Human Behavior, 5% to 15% of school-age children struggle with a learning disability, and a whopping 80% of those with learning disorders have an impairment in reading. Moreover, dyslexia is more common than you would think, affecting 20% of the population (Luna, 2024). These data have been confirmed by the International Dyslexia Association (IDA) (IDA, 2020) (Moats and Dakin, 2020).
In this article, we will focus on dyslexia and its cousins, dysgraphia and dyscalculia. Aside from dyscalculia sounding like the Dracula of dyslexia, these conditions all have their own unique identifiers, characteristics, and symptoms. As noted in prior articles covering OCD and ADHD, similar to these conditions, dyslexia has three types of specifiers.
Dyslexia. The first “DYS” and face of learning disabilities. It is characterized by the demonstration of an impairment in reading, which can include reading accuracy, decoding, and spelling.
Dysgraphia. Although “graph” is literally included in the word, it is not a focus on math. Rather, it is characterized by an impairment in writing, which can include written expression, grammar, punctuation, organization, and clarity.
Dyscalculia. Last but never least, “calculia” is closest to calculus. So, I guess that is more mathematical than just “graphs.” This condition is characterized by an impairment in mathematics, which can include difficulty in learning number-related concepts, processing numerical formulations, memorizing numerical patterns, and using symbols to perform accurate calculations.
I recommend remembering these by using a line from an Arnold Schwarzenegger movie, Kindergarten Cop, “Reading, writing, and arithmetic”.
Given the extensive history of documented dyslexia, one cannot help but beg the question: How is this being addressed? Although the ADA does not list dyslexia specifically as a disability, it has helped ensure treatment options in an effort to provide equity of care. These efforts include the Office of Civil Rights (OCR) and the Individuals with Disabilities Education Act 2004 (IDEA). Based on the OCR and IDEA, students are legally entitled to special services and accommodations for learning needs (OCR, 2024). This can be considered a win! Additionally, according to the IDEA, becoming aware of any of the “3 DYSs” early will yield more successful outcomes (IDEA, 2020).
Dyslexia can also persist into adulthood and often gets overlooked or underreported (Snowling et al., 2020). According to Alexander, some adults may individually compensate for their learning disability, while others may not (Alexander, 2024). In contrast, adults have significantly less resources than students and/or minors/children. According to the CDC, dyslexia is prevalent in adults. For example, 13.9% of U.S. adults have a cognitive disability, and 25% of the people with disabilities (18-44 years of age) do not have a primary care physician (CDC, 2024). Well damn, these statistics are just based on the reported adults and neurodivergent humans who we are aware of; the actual statistics could be much higher.
Moreover, shame is often tied to neurodivergence because of how neurodivergent persons think, process, and experience the world differently. This sentiment is also expressed in a Disability & Society article by D. Alexander, who noted that neurodivergent persons, specifically those with dyslexia, are often overlooked, even in academic settings (Alexander, 2024). Ironically, neurodivergent people, specifically people with dyslexia in this case, are often some of the most creative and out-of-the-box thinkers (Cancer, 2016).
I feel passionate about this topic because, according to my experience as a clinician, there may be more than 20% of adults facing this challenge. The challenge grows higher when considering the little support for adults after the age of 18. Even with early intervention and treatment, they are certainly better off, but how are adults supposed to “ABRA-CA-DABRA” their way through the rest of their adulthood?
Adults may be assisted in many educational areas, according to the Adult Education and Family Literacy Act (AEFLA) regulations; however, they will need to know about the resources or be able to find them (DOE, 2016). There are definitely resources, as noted in the AEFLA, but how does one with undiagnosed dyslexia or dysgraphia “shazam” their way into receiving both a diagnosis and/or intervention of adequate care? In addition, there are cases where adults may lack social support or are new to government programs with no clear direction of how to get started on getting a diagnosis or an intervention. Also, how do they even pay for it? As we know, medical care is not the most cost-friendly, as noted earlier by the CDC (2024).
A lack of access to appropriate care and diagnosis directly impacts the human right to equality of care. For neurodivergent persons living in a predominantly neurotypical world, is it any surprise that there may be some disparity between the two groups? Speaking from personal and professional experience, I have tried, many times, to assimilate into the neurotypical culture only to end up getting more overstimulated, over-ticked, and eventually over-it.
Many issues could be solved if given equal opportunity; however, with the rise of telehealth and the lingering impact of the COVID pandemic, there are more ways to educate as well as more challenges to access the same tools. This brings us to the issue of visibility. As we create more conversations, normalize neurodivergence, and embrace neurodiversity, we can start finding ways to support more adult populations to promote equality of care. It is a human right, and neurodivergent folks are.
In the neurodiverse world, although dyslexia is found in 20% of the general population, it does not have as much visibility as other conditions, such as ADHD and Tourette syndrome (van Schaik, 2021). According to Shah and colleagues, specific learning disorders like dyslexia often occur along with other neurodevelopmental disorders, such as ADHD (Shah et al., 2019) and anxiety. This is bananas! From a clinical stance, I can see where the argument is going and how ADHD will be more emphasized; however, these do not contribute to increasing the visibility and initiating the conversations on dyslexia. Even in terms of implementation, an evidence-based accommodation research study found that “very few empirically based studies are available to support or reject the effectiveness of a great deal of accommodation implementation.” (Gregg, 2012). The situation does not bode well for our current situation. As noted in prior articles, the work on neurodiversity and neurodivergence continues, and the only way we can effect change is by enacting and advocating for the right to equality of care.
As I exit stage right, I suggest that we look at how the COVID pandemic has shifted the way we learn and interact with others. It immediately impacts the human right to equality of care. In addition, individuals with dyslexia have new tools to consider. Technology has also been a game changer, specifically towards traditional concepts of accessibility and accommodation. In naming dyslexia when recognizing and normalizing neurodivergent experiences, equality of care can become less of a concept and more of a tangible outcome.
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.
Dyscalculia: Difficulty in performing arithmetical calculations resulting from damage to the brain.
Dysgraphia: Inability to write coherently, as a symptom of a neurological condition or as an aspect of a learning disability.
Dyslexia: 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.
Learning disability: A disability that affects the acquisition of knowledge or skills, in particular any of various neurodevelopmental conditions affecting the learning and use of specific academic skills such as reading, writing, or mathematics.
Neurodivergence: Differing in mental or neurological function from what is considered typical or normal (frequently used with reference to autistic spectrum disorders); not neurotypical.
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.
OCD: Obsessive-compulsive disorder; 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.
Telehealth: The use of digital technologies to provide healthcare services remotely.
Tic: A tic is an uncontrolled, sudden, repetitive movement or sound that can be hard to control.
TS: Tourette syndrome; 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.
Sources
Alexander, D. A. (2024). The dyslexic academic: uncovering the challenges faced as neurodiverse in academia and establishing a research agenda. Disability & Society, 1–6. https://doi.org/10.1080/09687599.2024.2312227
Cancer, A., Manzoli, S., Antonietti, A., & Besson, M. (2016). The alleged link between creativity and dyslexia: Identifying the specific process in which dyslexic students excel. Cogent Psychology, 3(1). https://doi.org/10.1080/23311908.2016.1190309
CDC, C. for D. C. (2024, July 3). Disability impacts all of us infographic. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html
DOE, D. of E., & AEFLA, A. E. and F. L. A. (2016, August 19). The Federal Register. Federal Register. https://www.federalregister.gov/d/2016-16049
Gregg, N. (2012). Increasing Access to Learning for the Adult Basic Education Learner With Learning Disabilities: Evidence-Based Accommodation Research. Journal of Learning Disabilities, 45(1), 47-63. https://doi.org/10.1177/0022219411426855
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
Luna, R. E., & UCLA Semel Institute for Neuroscience and Human Behavior, U. (2024, March 1). What are specific learning disorders? What Are Specific Learning Disorders? https://www.psychiatry.org/patients-families/specific-learning-disorder/what-is-specific-learning-disorder
Moats, L. C., & Dakin, K. E. (2020, March 10). Dyslexia Basics. International Dyslexia Association. https://dyslexiaida.org/dyslexia-basics/
OCR, C. O. of the O. for C. R. (2024, August 12). Protecting students with disabilities. U.S. Department of Education. https://www.ed.gov/laws-and-policy/individuals-disabilities/protecting-students-with-disabilities
Shah HR, Sagar JKV, Somaiya MP, Nagpal JK. Clinical Practice Guidelines on Assessment and Management of Specific Learning Disorders. Indian J Psychiatry. 2019 Jan;61(Suppl 2):211-225. doi: 10.4103/psychiatry.IndianJPsychiatry_564_18. PMID: 30745697; PMCID: PMC6345134.
Shaywitz, S. (2024, September 20). What is Dyslexia?. Yale Dyslexia. https://dyslexia.yale.edu/dyslexia/what-is-dyslexia/
Snowling MJ, Hulme C, Nation K. Defining and understanding dyslexia: past, present and future. Oxf Rev Educ. 2020 Aug 13;46(4):501-513. doi: 10.1080/03054985.2020.1765756. PMID: 32939103; PMCID: PMC7455053.
van Schaik, Monica, “Accept the Idea that Neurodiverse Kids Exist”: Dyslexic Narratives and Neurodiversity Paradigm Visions” (2021). Theses and Dissertations (Comprehensive). 2403. https://scholars.wlu.ca/etd/2403
Wagner, R. K., Zirps, F. A., Edwards, A. A., Wood, S. G., Joyner, R. E., Becker, B. J., Liu, G., & Beal, B. (2020). The Prevalence of Dyslexia: A New Approach to Its Estimation. Journal of Learning Disabilities, 53(5), 354-365. ttps://doi.org/10.1177/0022219420920377