“What’s in a name? That which we call a rose
By any other name would smell as sweet.” ―Juliet, from Romeo and Juliet (II, ii, 1-2)
“It ain’t what they call you, it’s what you answer to.” ― W.C. Fields
“We believe learning is a journey in which obstacles can become opportunities for growth, and direction is more important than distance.” ― Lawrence School, Guiding Principles (from the Mission, Vision, Guiding Principles)
The news services have been recently buzzing about the latest revisions to the Diagnostic and Statistical Manual (known as the DSM) used by social workers, physicians, and psychologists to identify and treat mental illness. This will be the fifth revision to the DSM; the last revision (DSM-IV) was in 1994.
One controversial issue in this most recent round of revisions was whether or not to use the terms “dyslexia” and “Asperger’s disorder” as diagnostic categories. Just last week, it was announced that Asperger’s disorder will be dropped. Dyslexia is in—but will be subsumed under the category of Learning Disorders, as detailed in this article from the Washington Post.
These changes have caused passionate debate in the professional community and outrage among some parents and teachers, who argue that subsuming the term “dyslexia” under a broader category minimizes the seriousness of the disorder.
But what’s in a name? How important is it to name the obstacles our children must dodge in order to succeed in school?
Physicians and clinicians report that it is certainly important to have the right name on whatever conditions afflict or impede children in school or in life. Their concerns are real: the names of these conditions, affixed by properly credentialed professionals, determine which treatments and services will be provided, by whom, in what settings, and for how long.
No name means no diagnosis, and no diagnosis means no treatment.
For school-aged children with language-based learning differences like dyslexia, no diagnosis also means no eligibility for services. This can result in academic disaster. As psychologist Deborah Waber points out in her book, Rethinking Learning Disabilities, untreated learning issues that a child may face early in school can initiate a ‘cascade’ of confounding negative effects. As the failure in one academic area builds, it spills over to other academic areas and then into the emotional arena, causing anxiety, depression, low self esteem, and a host of other problems secondary to the original learning issue.
Waber suggests that when it comes to identification and evaluation, we rethink our entire approach. Under the current system, we wait for two to three years for children to fall significantly below age and grade level norms before an assessment can be approved. By that time, the failure has already done lots of damage that may take years to correct. Rather than wait for failure, Waber argues that a concerned parent’s call for help ought to be enough to initiate services.
This makes more than common sense. It makes educational and economic sense as well. Ever since the first federal legislation was approved back in the 1970’s, educators, researchers, politicians, clinicians and physicians have been arguing and debating definitions, diagnostic thresholds, and treatment protocols for dyslexia and learning disabilities. Research is ongoing. There is still no real agreement. Eligibility is not portable from state to state or county to county, despite federal legislation that is intended to guarantee that students receive special education services when needed. The debates between and among the professions and professionals rage on, while bright children continue to fail in school and needlessly suffer the outrageous indignity of illiteracy.
I have no argument with professionals trying to get the right name for what ails us. But, along with Waber, I do argue that we need not wait to serve children while the professionals argue semantics.
We know how to teach a child to read—and we can identify a child who is at risk for reading failure very early in the game. We don’t need a diagnosis of dyslexia or a label! We know what to do and we know how to do it. The fact is, the sooner we intercede, the easier, cheaper, and more effective the remedy. We can prevent Waber’s ‘cascade‘of negative effects.
The research has been done, the arguments have been made, and the jury is in. Early screening and prompt intervention in grades K-4 prevents reading failure and reduces referrals to special education.
The first time I heard the term “dyslexic” it was used in a way that was very personal to me. I was in a job interview in June of 1975, with Dr. Charles Drake, the founding headmaster of the Landmark School in Pride’s Crossing, Massachusetts; 35 miles north of Boston. Landmark serves bright children and adolescents with language-based learning disabilities like dyslexia. My little brother Adio was 12, couldn’t yet read, and was enrolled at the school.
At the time of this interview I was 24; a college graduate with two years of inner city teaching experience. I was no longer struggling to pass courses in school or college. In fact, I was relieved to have escaped from the University of Massachusetts in 1973 with a bachelor’s degree in English Literature and Urban Education. It took six years to navigate the gauntlet of required classes, and to negotiate with deans and faculty to substitute science and philosophy courses for classes I struggled to pass (and ultimately failed) in foreign language and math. Dell and I married in our sophomore year, and she helped me with spelling and grammar so that I could get through college. Without her help, I would have certainly dropped out.
But once I got my degree, I put those days behind me. I buried the experiences of struggling to learn to read and spell in school along with the names I secretly called myself— like “stupid” and “lazy.” They seemed accurate. Why else did I have such difficulty with reading, handwriting and spelling? Everyone else seemed to do these tasks quite easily.
When I interviewed at Landmark in 1975, I was ignorant of dyslexia even though I had taken courses to earn a teacher’s license in college and had a brother who was struggling with that very challenge.
About ten minutes into my interview with one of the heads of Landmark High School, the interview started heading ‘south’ as he asked me about F’s and D’s on my college transcript from UMass. I bridled defensively—I had just finished teaching two years in a challenging inner city school in Philly. Why ask about college?
But it was true—my college transcript still smolders with the evidence of my six-year struggle. I didn’t want to talk about the bad grades. I wanted to talk about my work in the classroom. Just when I thought he was going to call for the ‘hook’ and dismiss me, he asked me if I would like to meet Dr. Drake, the Headmaster. I thought, “That’s strange… why not just shake hands and give me the old, ‘Thanks for your interest, we’ll call you and let you know next week…’ routine?”
Intrigued, I followed him across the campus to the Headmaster’s office. Dr. Drake spoke slowly and deliberately in a deep, resonant, warm voice with a decidedly southern accent. He was a psychologist and a Congregational minister. He was dyslexic himself I eventually learned, and he was deeply committed to serving children and families who struggled with dyslexia at a time in our history when very few people knew anything about it.
After some warm comments about my brother and my family, Dr. Drake proceeded to stun me by speaking in a most casual way about the very problems that I had always tried to keep hidden. I remember thinking, panicked, “This guy can read my mind!” Had he somehow gotten a hold of my elementary school teachers? He seemed to know everything about me. He asked me about my struggles with the alphabet and math facts in first and second grade. He knew all about my trouble telling time and using the dictionary in the third and fourth grades. Of course, now I can look back and know that he was simply reciting the issues that lots of children with language based learning differences have in elementary school—but at the time, I was convinced he was clairvoyant!
At one point, the interview got so scary I interrupted him. Abruptly—almost to the point of rudeness—I offered to save us both a lot of valuable time. I suggested he move on with what was a busy schedule for him and I get on with a long train ride back to Philly. He was completely unimpressed with my attempt to put him off and calmly, quietly, and firmly pressed on. I recall that I tried to marshal all my power to control overwhelming emotions that bubbled up. I wanted to argue and prove him wrong! I wanted to escape the interview! I wanted to block my ears! I wanted to run!
In response to my poor attempt at hiding my distress, he did what I could only describe at the time as some kind of magic. He smiled, leaned forward just a bit, looked directly into my eyes, and asked me with great compassion and understanding, “Lou, don’t you get it? Don’t you have any idea why you have had the experiences and struggles you have had in school?” He talked about my brother, Adio, how dyslexia probably runs in families, and how dyslexia was being treated at Landmark.
Eventually, I agreed to three hours of testing in their clinic. I left his office later with a new understanding about a battle I had fought every day as a student in school, as a young man in college, against an enemy that now had a name:
Knowing the name of my nemesis was a relief to me in some ways. It was an answer and a puzzle all at the same time. It was also a source of grief. Why this? Why now? Why me?
I get it. What we call something is important. If we don’t name something correctly, children and others may come to inaccurate, harmful conclusions. Physicians and psychologists should be able to bring all their diagnostic acumen to bear on any question of diagnosis and treatment. We should get the right names on the conditions that impact our lives. We should talk honestly and directly to our students. They should know as much about their own thinking and learning as they can possibly understand.
However, let’s be clear: A child’s failure to learn to read in school is as much a failure of the educational system and environment as it is any thing else. I am not blaming teachers who don’t know what to do about a child with dyslexia—I was one myself! Inexplicably, we continue to churn out teachers from college with education degrees that leave them clueless about how to teach reading—even now.
I had wonderful teachers who paid attention to my situation. By seventh grade one of my English teachers took time to tutor me so that I could read well enough to move into a college preparation track in high school. Neither of my parents called—no one tested me. This teacher simply recognized that I was unable to write and faking a good deal of my reading. She decided to tutor me. I met several teachers like that during my school years.
The main point is that illiteracy is not a disease—and neither is dyslexia or dysgraphia. The failure of a child to learn to read and write in school can be remedied with or without a diagnosis in school by educators. Treatments for illiteracy and dyslexia are educational—not medical—and should be a part of every teacher’s toolbox before they ever step foot in a classroom.
After my interview with Dr. Drake, I rode the train back to Philly trying to read, realizing that I had stared at the same page for over three hours. During that train ride, I began to reconstruct my understanding of myself because now I had a name that explained lots that I had tried to avoid or discount over the years. I journeyed through each year of my early childhood and schooling recalibrating and recategorizing experiences.
Oh—and I got the job! I stayed at Landmark for 13 years, teaching and learning at the same time. I left briefly to earn a master’s degree in Reading and Language, making a career out of my struggle with dyslexia.
The journey I began with Dr. Drake on that day in 1975, in that interview, continues to this very day here with our students and teachers at Lawrence School in Northeast Ohio. Dr. Drake was not only my employer for 14 years—he was a guide and mentor. Through his work at Landmark, he shared his conviction and faith in the future of our students—in young teachers like me, and in the future he hoped would materialize for our educational system.
He didn’t wait for the psychologists and educators of the day to agree with him. If he had, we’d all still be waiting! Rather he simply set about exploring and thinking; finding a way where none had existed before. He taught students with approaches he knew would work.
We all have names—some names and labels we choose, and others we earn. Each reveals something essential about us. I didn’t choose the name “ dyslexic” but I accept it now, and pay it the respect it is due. It doesn’t define me—but it does inform me and others who might want to know why I double-check my arithmetic, why I send everything I write to Dell; or to Ann, our executive assistant; or to Courtney, our communications director.
Dyslexia explains why it takes longer for me to get some tasks done. Sometimes dyslexia has been a stumbling block that I was able to turn into a stepping stone with help from others. Other times it has just been a stumbling block. Dr. Drake was fond of saying that having dyslexia and 59 cents would get you a cup of coffee at McDonald’s. The price has changed for coffee—but the cost of dyslexia to the individual has remained stubbornly the same over the decades.
Dyslexia should be in the DSM-V. The testing and the diagnosis can inform us, but it does not define us. A diagnosis is not a prerequisite for us to do our primary job in school:
Teach all children to read.
We don’t need the DSM to help us apply the extensive body of scientific evidence and solid research that has been done over the last two decades about how children learn to read in our schools and classrooms.
To those concerned and worried about the DSM-V, I say, let’s keep our eye on the ball. Let’s put the focus on serving the children in the classroom. Let’s use our ire and outrage to get things right there so our children don’t have to struggle for years on end before receiving the vital services they so rightfully deserve.
If not us, who?
If not now, when?
If we can do our jobs now in schools to teach all children to read, I promise by the time the DSM-VI comes out, dyslexia as a diagnostic category could be rendered moot.
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