On Normal, ADHD, and Dyslexia: Neither Pathologizing, Nor Rendering Invisible
No child struggling to read should have that struggle rendered invisible, but pathologizing behavior that does not conform to a narrow definition of normal also carries significant and negative consequences.
In 1973, Elliott Kozuch explains, “the American Psychiatric Association (APA) — the largest psychiatric organization in the world — made history by issuing a resolution stating that homosexuality was not a mental illness or sickness. This declaration helped shift public opinion, marking a major milestone for LGBTQ equality.”
Homosexuality in many eras and across many cultures has been rendered either invisible (thus, the “closet” metaphor) or pathologized as an illness (thus, the horror that is conversion therapy).
This troubling history of responses to homosexuality confronts the inexcusable negative consequences of shame and misdiagnosis/mistreatment against the more humane and dignified recognition that “normal” in human behaviors is a much broader spectrum than either invisibility or pathologizing allows.
How we determine “normal” in formal education is profoundly important, and the current rise of dyslexia advocacy as that impacts and drives reading legislation and practice for all students parallels the dangers identified above with rendering invisible or pathologizing children who struggle with reading.
Further, this more recent focus on dyslexia looks incredibly similar to the increased diagnosis of ADHD, which was initially left invisible and then pathologized (probably over-diagnosed and heavily medicated).
Let’s focus first, then, on ADHD, and how the dynamic of “normal,” “invisible,” and “pathologized” impacts children.
In 2013 Maggie Koerth-Baker reported:
The number of diagnoses of Attention Deficit Hyperactivity Disorder has ballooned over the past few decades. Before the early 1990s, fewer than 5 percent of school-age kids were thought to have A.D.H.D. Earlier this year, data from the Centers for Disease Control and Prevention showed that 11 percent of children ages 4 to 17 had at some point received the diagnosis — and that doesn’t even include first-time diagnoses in adults.
But here is the problem:
That amounts to millions of extra people receiving regular doses of stimulant drugs to keep neurological symptoms in check. For a lot of us, the diagnosis and subsequent treatments — both behavioral and pharmaceutical — have proved helpful. But still: Where did we all come from? Were that many Americans always pathologically hyperactive and unable to focus, and only now are getting the treatment they need?
Probably not. Of the 6.4 million kids who have been given diagnoses of A.D.H.D., a large percentage are unlikely to have any kind of physiological difference that would make them more distractible than the average non-A.D.H.D. kid. It’s also doubtful that biological or environmental changes are making physiological differences more prevalent. Instead, the rapid increase in people with A.D.H.D. probably has more to do with sociological factors — changes in the way we school our children, in the way we interact with doctors and in what we expect from our kids.
For context, when I was exploring the ADHD phenomenon in 2013, I ran across a provocative piece from 2012 about ADHD in France, Why French Kids Don’t Have ADHD, published in Psychology Today. Immediately, this spoke to my concern about both pathologizing human behavior that may be within a broader understanding of normal and my skepticism about immediately medicating, instead of addressing diet, environment, etc.
However, the situation in France is far more complicated as noted in a piece also published by Psychology Today in 2015 , French Kids DO Have ADHD, this time acknowledging:
In other words, it’s not that French kids, or Europeans, don’t have ADHD, says French child psychiatrist Michel Lecendreux, but that they’re clinically invisible [emphasis added]. “It’s just not very well understood, nor is it very well-diagnosed, nor well-treated.” Lecendreux, a researcher at the Robert Debre Hospital in Paris who also heads the scientific commission for the French ADHD support group HyperSupers, told me that his research suggests that fewer than one-third of French children who have ADHD are being diagnosed.
The circumstances around ADHD in France reveal the power of narratives and cultural responses to human behavior, any people’s perception of “normal.” A study by Sébastien Ponnou and François Gonon from 2017, in fact, details the pervasiveness of different narratives about ADHD in French media:
Two models of attention deficit hyperactivity disorder (ADHD) coexist: the biomedical and the psychosocial. We identified in nine French newspapers 159 articles giving facts and opinions about ADHD from 1995 to 2015. We classified them according to the model they mainly supported and on the basis of what argument. Two thirds (104/159) mainly supported the biomedical model. The others either defended the psychodynamic understanding of ADHD or voiced both models. Neurological dysfunctions and genetic risk factors were mentioned in support of the biomedical model in only 26 and eight articles, respectively. These biological arguments were less frequent in the most recent years. There were fewer articles mentioning medication other than asserting that medication must be combined with psychosocial interventions (14 versus 57 articles). Only 11/159 articles claimed that medication protects from school failure. These results were compared to those of our two previous studies. Thus, both French newspapers and the specialized press read by social workers mainly defended either the psychodynamic understanding of ADHD or a nuanced version of the biomedical model. In contrast, most French TV programmes described ADHD as an inherited neurological disease whose consequences on school failure can be counteracted by a very effective medication. (abstract)
Back in the US, in Room for Debate from 2016, several experts challenged over-pathologizing children with ADHD labels, the racial disparity in that pathologizing, and the dangers of medicating for ADHD as an avenue to controlling children.
Thus, the interaction among the fields of medicine and psychology, media representations of clinical conditions, and the spectrum along “normal,” “invisible,” and “pathologized” has profound consequences for children/teens and formal education.
Currently, we are witnessing mainstream media build a compelling narrative about the “science of reading” and the needs of children with dyslexia; this is a narrative about children with dyslexia being rendered invisible and there existing a “science of reading” that is the medicine necessary to cure that pathology.
However, as the examinations of homosexuality and ADHD above demonstrate, when it comes to the humanity and dignity of children being served by the institution of public education, we cannot tolerate either rendering them and their behaviors invisible or over-pathologizing, and thus misdiagnosing/mistreating, them.
This leads to the current rush to assess and identify dyslexia as a foundational part of teaching all children to read, policies about which the International Literacy Association (2016) offer several concern:
Errors in reading and spelling made by children classified as dyslexic are not reliably different from those of younger children who are not classified as dyslexic. Rather, evidence suggests that readers with similar levels of competence make similar kinds of errors. This does not suggest a greater incidence of dyslexia, but instead that some difficulties in learning to work with sounds are normal.
Yet, the rise in advocacy for identifying dyslexia has gained significant momentum in state policy even as ILA warns:
Some have advocated for an assessment process that determines who should and should not be classified as dyslexic, but this process has been shown to be highly variable across states and districts in the United States, of questionable validity, and too often resulting in empirically unsupported, one-size-fits-all program recommendations [emphasis added].
No child struggling to read should have that struggle rendered invisible, but pathologizing behavior that does not conform to a narrow definition of normal also carries significant and negative consequences. As ILA notes above, a more reasonable approach is simply to expand the spectrum of normal while building a supportive environment tempered with patience.
I teach a graduate student whose child is now in a school for dyslexic children. That child was floundering personally and academically in traditional school, and now flourishes, something everyone would applaud.
The parent, however, made a really powerful observation, noting that the child’s recent success comes in a school that champions Orton-Gillingham-based reading programs  (often OG for short).
Advocates for universal screening for dyslexia also advocate for systematic intensive phonics for all students, specifically OG. Yet, this child is now in a school with a 1–8 teacher-student ratio and a guaranteed 1.5 hours a day with 1–2 teacher-student ratio instruction.
The parent stated flatly that almost any child would flourish in those conditions and the different way the child is being taught to read is not necessarily the real cause of the new success. I must add, we absolutely have no research exploring these dynamics and controlling for variables that would help us understand the importance of reading programs versus learning/teaching conditions (see, for example, unfounded and overstated responses to 2019 NAEP reading scores).
Struggling to read is, in fact, quite normal, and a long, chaotic process. Teaching reading is very complex, unique to each child, and as ILA clarifies, “there is no certifiably best method for teaching children who experience reading difficulty.”
Demands that all children attain some prescribed proficiency in reading by third grade are artificial and themselves unnatural, abnormal.
No child should be invisible in schools, but pathologizing childhood behavior that is quite normal because some adults have irresponsible deadlines and expectations for those children is inexcusable.
Teaching children to read needs a new normal, one that acknowledges the power of learning and living conditions while avoiding the dangers of finding fault in any child that we can simply cure with some magical quick fix.
 From ILA:
[R]esearch does not support the common belief that Orton-Gillingham–based approaches are necessary for students classified as dyslexic (Ritchey & Goeke, 2007; Turner, 2008; Vaughn & Linan-Thompson, 2003). Reviews of research focusing solely on decoding interventions have shown either small to moderate or variable effects that rarely persist over time, and little to no effects on more global reading skills. Rather, students classified as dyslexic have varying strengths and challenges, and teaching them is too complex a task for a scripted, one-size-fits-all program (Coyne et al., 2013; Phillips & Smith, 1997; Simmons, 2015). Optimal instruction calls for teachers’ professional expertise and responsiveness, and for the freedom to act on the basis of that professionalism.