By Rick Smith, CEO, and Jennifer Topple, Board Chair, International Dyslexia Association
Do you have a moment to talk about the “D word,” also known as dyslexia?
We hoped we were past needing to have this conversation—but if you read a recent Huffington Post opinion piece about a “supposed dyslexic subgroup,” or saw any of the social media commentaries, you know that we still need to have difficult conversations about dyslexia. The meaning of the “D word” may be unclear to some, but not to us. We know what the word means and what dyslexia is.
The International Dyslexia Association has been working at this for a long time (nearly 70 years!), and we have done so in collaboration with dyslexia’s many stakeholders—families and people struggling with dyslexia, educators, researchers, advocates, policymakers, and policy shapers. Each has played a vital role in helping us advance a clear, concise, research-informed understanding of dyslexia and promote quality reading instruction for all children.
Some critics argue that since scientists use varying definitions to characterize dyslexia, we should doubt its existence. Some argue that since scientists cannot point to the exact underlying cause of dyslexia, we should question whether it is real. Some say that dyslexia is a “white-privilege disability” for lazy children whose parents refuse to take responsibility for their offspring’s shortcomings. Some discount dyslexia’s significance, acknowledging that while it may be real, far too many kids struggle to read for various reasons (e.g., poor quality reading instruction) and that’s all that counts.
Let’s examine these arguments
Yes, scientists have used different criteria for defining dyslexia. So what? The vast majority of scientists use the same characteristics when defining dyslexia. Children with dyslexia struggle to accurately read and spell words. What differs among scientists is how profound and persistent the deficits must be before they label a child with dyslexia. Even with these differences, the findings still demonstrate that for no apparent reason, some children struggle to learn to read print despite the most favorable circumstances life offers. These children may have the opportunities that money affords. They may have the love that comes from a devoted caregiver. They may have a teacher providing them with quality reading instruction. In short, they may seem capable and advantaged in every way, but still these children struggle to read.
Yes, we still do not know precisely what causes dyslexia. Yet, we have made great advances in understanding a set of candidate causal factors. Differences in a child’s ability to process language are linked to dyslexia. We have also identified a clear genetic link, as well as differences in brain structure, function, and chemistry that are associated with dyslexia.
But even with that said, so what if we have not found the exact causes? We do not know what causes cancer either, in spite of knowing a considerable amount about risk factors and biological differences associated with it. That does not make the death of a loved one from cancer any less painfully real. Not knowing dyslexia’s cause(s) does not make the pain felt by a parent whose child struggles to read any less real. These parents watch their children work harder than their peers simply to keep from falling farther behind. It can be heartbreaking. No wonder the driving force behind efforts to provide educational support for these children comes from concerned parents and teachers.
Dyslexia’s various hallmark characteristics fall along continuums of severity that can change developmentally across a lifespan and improve with environmental influence, such as sustained and intensive, comprehensive, evidence-based literacy instruction.
Whatever their ethnic background or economic status, any child may struggle to learn to read. And, let’s be clear—a child who is not white or from privilege can also struggle to learn to read due to dyslexia. For these children, their circumstances (often their postal code) and lack of access to appropriate reading instruction usually exacerbate dyslexia’s effects. Unfortunately, we live in a society in which wealth is still disproportionally linked to race, ethnicity, and opportunity.
Logic tells us that far too many children struggle to read for dyslexia to be the only explanation. Most of these kids do not have a brain-based difference in how they process language. Rather, their problems with reading stem from poor early literacy experiences and a lack of quality reading instruction. But, acknowledging this reality does not invalidate dyslexia. Nor does it negate the very real toll dyslexia has on the wellbeing of far too many children—of all ethnicities and at all socio-economic levels—or the need to redouble our efforts to promote a better understanding of the “D word.”
Let’s focus on what’s most important
The question is not why some people continue to marginalize dyslexia or deny its existence. That is a distraction. The burning question is why do so many children struggle to develop what arguably is the most foundational skill of a citizen of the 21st century—print literacy? The answer? We have not implemented quality, research-validated reading instruction for all children.
The International Dyslexia Association is deeply concerned with this question and with overcoming barriers to providing this reading instruction to every child in every classroom. We are concerned because while this instruction is important for all children, it is absolutely vital for those with dyslexia. We also are concerned because when this reading instruction is fully implemented, we are better able to find and help those children who struggle with reading due to dyslexia.
In addition to early risk factors linked to future reading success, the most reliable predictor of dyslexia is a failure to make gains in reading when provided with quality, comprehensive, evidence-based literacy instruction in the general education classroom. That fact compels us to ensure that all children have access to this instruction, which allows us to identify the children with dyslexia who will require far more intensive and sustained comprehensive evidence-based literacy instruction to become proficient readers. We are also compelled to raise awareness of the emerging means for identifying children at risk for reading failure and for implementing research-informed, comprehensive universal screenings as early as possible. These realities drive our commitment to helping to establish the prevention models necessary to reduce the prevalence of reading failure.
In short, when we focus on the needs of children with dyslexia, we implement robust educational systems that benefit all children—until everyone can read. This is the aim of the International Dyslexia Association.
To learn more about dyslexia and our work to ensure that comprehensive evidence-based literacy instruction is provided to all children, please visit our website DyslexiaIDA.org. For in-depth information about this instruction (AKA, Structured Literacy), click here and here. For excellent articles about the value of the dyslexia construct, and the term dyslexia, see these links:
- Marcus Aurelius and the Continuing Dyslexia Debate
- Defending the “D Word … Dyslexia
- Demystifying the “D Word:” Why and How the Term Dyslexia Should be Used
Rick Smith, Chief Executive Officer
Rick Smith joined IDA in January 2015 as CEO. Under his leadership, the organization has designed the IDA Destiny, implemented IDA’s first global brand advancement and development initiative, TeamQuest, and integrated planning and performance management. As CEO, Rick is responsible for the strategic advancement of the International Dyslexia Association, its brand, and all IDA programs nationally and globally. Rick has 35 years of experience in organizational management and is nationally recognized as a top organizational strategist and visionary having managed large organizations generating over $400,000,000 during his tenure. He has been President and CEO of the American Liver Foundation, President of the National Multiple Sclerosis Society in Arizona and Maryland, CEO of the American Diabetes Association in California and New Mexico and Executive Director of the American Cancer Society in Maryland.
Jennifer Topple, M.S., CCC/SLP, Chair
Jennifer Topple, M.S., CCC/SLP, has been elected by the Delegate Assembly as the new Chair of the IDA Board of Directors. Ms. Topple has been on the Board of Directors and has served as Chair of the Branch Council Executive Committee (BCEC) and as President of the Georgia Branch. She is the Director of Assistive and Instructional Technology at The Howard School, a K-12 school for students with language-based learning differences in Atlanta, Georgia. Ms. Topple has been a speech-language pathologist in both hospital and school settings for more than sixteen years with a focus on language-learning disabilities and assistive technology. She has presented and held workshops on the topic of assistive technology both locally and internationally. Ms. Topple holds an M.S. in Speech and Hearing Sciences from the University of New Mexico and a B.A. in Public Relations from Auburn University.
IDA’s Mission Statement:
Our mission is to create a future for all individuals who struggle with dyslexia and other related reading differences so that they may have richer, more robust lives and access to the tools and resources they need.
The International Dyslexia Association (IDA) provides the opportunity for all people who struggle with dyslexia and other related reading differences to have richer, more robust lives by providing access to the tools and resources they need. IDA’s home office, 42 branches in the United States and Canada, and 31 Global Partners provide educator training, publications information, and support to help struggling readers around the world. IDA is the authoritative voice of current and reliable research and information to educate families and professionals about dyslexia and to inform the practice and policy changes needed to provide effective instruction for all people to learn to read. IDA has been serving individuals with dyslexia, their families, and professionals in the field for more than sixty-six years. Its membership is composed of a global network of people with dyslexia, their families, educators, diagnosticians, physicians, researchers, and other professionals in the field. IDA provides publications and information and referral services to thousands of people each year, and its annual conference attracts thousands of researchers, clinicians, parents, teachers, psychologists, educational therapists, and people with dyslexia. Visit IDA at dyslexia.org to learn more.
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