By Hal Malchow, IDA President-Elect
The dyslexia debate is, at first glance, a small one. Julian Elliott and Elena Grigorenko, in their new book, The Dyslexia Debate, argue that the term “dyslexia” describes too many conditions, is too broad for diagnosis, and should be replaced by “reading disorders,” a term that is, oddly, even broader and less scientific than the word they seek to replace.
In 2002 the International Dyslexia Association adopted the following definition for dyslexia: “Dyslexia is a specific learning disability that is neurological in origin. It is characterized by difficulties with accurate and/or fluent word recognition and by poor spelling and decoding abilities. These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction. Secondary consequences may include problems in reading comprehension and reduced reading experience that can impede growth of vocabulary and background knowledge.” This language is echoed by the NIH (National Institutes of Health) in its own definition.
The International Dyslexia Association recognizes that the term dyslexia often is used inaccurately to describe other conditions associated with reading difficulties. That usage adds confusion and a lack of specificity to the diagnosis of dyslexia. The more we learn about dyslexia and related disorders, the more complex these conditions appear. But in their pursuit of a more perfect definition, Drs. Elliott and Grigorenko overlook real world consequences for people who actually live with the condition they would rename.
The word “dyslexia” serves many purposes. It is written into the laws of our nation and many states to afford remediation, accommodations, and other services to help people with dyslexia succeed. It is a word woven into decades of research and groundbreaking approaches that alleviate the condition it describes. It offers a common understanding in classrooms across America that reading difficulties are not easily explained by laziness or low intelligence. Instead they may lie in a neurodevelopmental condition that effective teaching methods can address. To avoid confusion about the term “dyslexia,” many states have incorporated the IDA definition into their laws.
Today, we live in a world where complex issues often are reduced to sound bites empty of real content. And in this world, those who tamper with commonly understood language do so at their peril. As Drs. Elliott and Grigorenko have acknowledged, the debate they launched has reached far beyond their own simple question. The dyslexia debate, in some places, has degenerated into a debate about whether dyslexia, as we currently understand it, is real at all. As a result, Drs. Elliot’s and Grigorenko’s own position has been characterized in ways remote from anything they have written or proposed. By tampering with the language, Drs. Elliott and Grigorenko have themselves become misunderstood.
“We believe that ‘dyslexia’ is a beautiful word. True, it describes a category of learning disorders. But it also describes a community, a body of knowledge, a category of law, a more positive sense of self, and a belief about the progress we can achieve together.”
In her eloquent defense of the word “dyslexia,” Maryanne Wolf, a leading reading scientist at Tufts University, stated that what is most important about this word is that it tells a child who struggles to read, “It is not your fault.” My own story speaks to that point.We in this field, whether we be scientists, educators, or advocates, should understand, more than anyone else, the importance of words. Language and limitations in mastering it are the focus of our work. Changing the accepted language of our field may be appropriate for academic speculation. But changing words has no positive consequence for those who live with this condition.
I came to the International Dyslexia Association not as a professional but as a parent. After my son was diagnosed with learning disorders, he entered The Lab School of Washington as a fourth grader unable to read at all. More than a year later, in preparation for a parent conference, I received a twenty-page document describing testing and detailing deficiencies in a number of mental processes, some of which I never imagined existed at all. It was excruciating to read, but finally I reached the last page where his standardized test scores appeared. After learning about all of the things he could not do well, I saw his reading score. He was reading at the fifth grade level.
I don’t recall that the word “dyslexia” ever appeared in that report. Yet this word guided us to a school that could teach him to read. It brought to that school teachers and staff who were inspired by the challenge of teaching children for whom reading acquisition would be a very difficult task. Finally, it told my son that he was not stupid, but simply had a condition that meant he would have to work harder to master some skills.
The word “dyslexia” may not satisfy Drs. Elliott’s and Grikorenko’s standards as a scientific definition. At the International Dyslexia Association we understand the science behind reading disorders. We also understand the power of common language and the mission and purpose it can provide. We believe that “dyslexia” is a beautiful word. True, it describes a category of learning disorders. But it also describes a community, a body of knowledge, a category of law, a more positive sense of self, and a belief about the progress we can achieve together. We will continue to use the word “dyslexia” now and in the future.
Hal Malchow is a successful businessman and political consultant who has provided fundraising services for groups like the American Red Cross, the Democratic National Committee, the US Olympic committee and many others. He has worked for six presidential candidates. Hal co-authored of The Sword of Darrow, a young adult fantasy novel, with his then eight-year old dyslexic son, Alex. Through that association Hal joined the IDA Board in 2011 and is now the president-elect.
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