Dyslexia Is Very Treatable. So Why Aren’t We Helping More Kids?

“They know I struggle, but they don’t help me.”

Matthew, a recently evaluated fifth-grader, explains his frustration with reading and school. His story is mirrored in countless others we've witnessed as educational consultants. A high school senior was denied an athletic scholarship to college because she was reading at a third-grade level. A sixth-grader still read at an early first-grade level because she spent three years, after an inappropriate placement, in a class for students with intellectual disabilities.

The vast majority of the students we see have a recognized and well-understood learning disability: dyslexia. Yet, far too often, the disorder goes undiagnosed and untreated, with devastating results.

In our combined 60 years’ worth of experience, we have witnessed the devastation firsthand. Time after time, we have observed students receive profoundly insufficient or inappropriate services despite a clear diagnosis. These students and their families have worn a path to our doors, without pause, for all of these years.

Our careers as diagnosticians have paralleled several decades of increasing understanding of the science of reading disorders. People with dyslexia, although bright, experience difficulty with written and/or spoken language. They have trouble understanding how letter sounds are put together to make words. This affects their ability to read and spell and to explain their thinking in writing. For example, while a dyslexic fifth grader may readily understand and appreciate the life cycle of the butterfly, she may struggle to decode the word “caterpillar."

There is a disconnect between what we know about dyslexia and how we treat it.

From our perspective, dyslexia is a rewarding diagnosis to make since it has a specific cause and an effective course of treatment. The research is clear and demonstrates both the urgency and benefit of early diagnosis and intervention for struggling readers.

Yet despite an increase in awareness and although most schools now have staff trained to instruct dyslexics, vast problems persist. There is a disconnect between what we know about dyslexia and how we treat it.

The current school culture is often one of “wait and see” for struggling readers. Some schools erroneously claim that dyslexia can’t be diagnosed until children are reading or even until they are in third grade. Imagine the consequences if your doctor offered only half a dose of antibiotic to your child to treat a strep throat, or decided to “wait and see” what happened if your child got acute appendicitis.

Even when school evaluations identify underlying language disorders consistent with dyslexia, the intervention is often not early enough, not appropriate, insufficiently individualized or intensive enough.

The impact can be ruinous.

Imagine the consequences if your doctor ... decided to 'wait and see' what happened if your child got acute appendicitis.

This scenario continues to play out within our schools and communities. Parents become tireless record-keepers and advocates for their children. School districts juggle intervention and resource allocation. Dyslexic children suffer while the grown-ups decide what to do.

Statistics regarding literacy attainment in the United States are alarming. Forty-five million Americans are functionally illiterate and cannot read above a fifth-grade level. Nearly two-thirds of America’s students in fourth, eighth and 12th grades scored below the proficient level in reading. Massachusetts is not exempt from these dire statistics: 2015 MCAS results for English/Language Arts showed that about 40 percent of third-graders were not reading at grade level.

The problem of untreated dyslexia and the ability to be literate later in adulthood are inextricably linked. Persistent reading difficulties from kindergarten through adolescence interfere with self-esteem, peer relationships, development of identity and ability to learn. Children who struggle with reading struggle with vocabulary and developing their fund of information. High-schoolers with untreated reading disabilities look ahead to their future with anguish and unrealized dreams. Low-literacy adults experience difficulty securing jobs that match their intellectual strengths or affinities. With appropriate intervention in the early years, dyslexic individuals can be afforded the same choices as typical learners after high school.

It would be unfortunate for our state to finish this decade in the current mindset. We must secure the link between research and practice and support schools who feel disempowered to take responsibility or commit resources. We must recommit ourselves to prioritize literacy development during the elementary years for all children — which includes giving dyslexic children the support and services they need to achieve literacy, just as their peers do — before they get to middle school. As long as we continue to see the problem as someone else’s, dyslexics in Massachusetts will continue to experience deleterious and far-reaching academic, vocational and emotional consequences.

There is hope. Currently, the Massachusetts Legislature is considering four bills that would require the Department of Elementary and Secondary Education to issue guidelines to school districts on early screening procedures for dyslexia. The bills differ in their requirements of how schools must help students with dyslexia, including extra teacher training.

Many students who receive generic reading instruction learn to read at grade level. However, dyslexic students require structured literacy approaches.

As one first grader said, “I have a locked box in my brain and no one has the key.”

But we have the knowledge. We have the key. All we need is someone to turn it.