When Anna and Chris Thorsen of Nashville sat down for the first parent-teacher conference of their daughter Clara’s second-grade year, they weren’t surprised to hear that Clara was having trouble telling time. Her teacher also said that Clara seemed to learn something one day, then forget it the next; her writing was poor and slanted upward, no matter how hard she tried.
“My husband starts to smile and reaches over and pets my arm, because in that moment, we both know Clara has dyslexia. There’s no question,” said Anna Thorsen.
Thorsen knows something about dyslexia herself, having struggled through school, and having been diagnosed with it at age 27. “It was almost like her teacher was ticking through a dyslexia checklist and didn’t know it.”
In many children with dyslexia, a neurobiological condition in which the brain fails to read words or letters, a lack of swift and intensive intervention can result in reading failure as well as psychological difficulties for the child. When the Thorsens came home from the conference, they decided to get Clara tested immediately and then decide the next steps.
Challenges at School
Getting testing and intervention for dyslexia at their public school proved to be more complicated than it first appeared. The Thorsens experienced more hurdles than they had expected, including the most basic: recognizing that dyslexia exists. Thorsen recalled the Nashville school district telling them that the state of Tennessee didn’t recognize dyslexia as a learning disorder.
But the Thorsens, who are both attorneys, knew differently. The Tennessee statehouse had passed the “Dyslexia is Real” bill some months before, in April 2014. The law made provisions for dyslexia as a recognized reading disability, as well as for teacher training on dyslexia, both for teachers already teaching and in education schools in Tennessee. Yet while provisions had been decided at the state level, for one reason or another, they hadn’t made their way down to the district, which was still operating under old guidelines.
When the Thorsens showed the school and the district laws from both the federal government and the state of Tennessee recognizing dyslexia as a learning disability, their school listened and agreed to help Clara get what she needed. But the family received pushback from the district, which balked at giving Clara, whose tests showed she was highly dyslexic with a high IQ, an Individualized Education Plan (IEP) without going through the proper channel -- in this case, 26 weeks of specialized reading instruction happening inside the classroom called Response To Intervention (RTI). If Clara failed to improve after 26 weeks, she would then qualify for an IEP.
With a positive diagnosis in hand, the Thorsens believed that 26 weeks of RTI would only delay a more dyslexia-specific intervention. They enlisted the help of the Office of Special Education Programs at the federal Department of Education to pressure the state of Tennessee to recognize dyslexia as a reading disability, even though the “Dyslexia is Real” law was already firmly in place. After a monthlong struggle to secure services, the district finally relented, giving Clara an IEP that focused on both her dyslexia and her giftedness.
The district said it is only following guidelines set up by the state of Tennessee. "We test for specific learning disabilities in accordance with state guidelines," said Debbie McAdams, executive director for exceptional education at Metro Nashville Public Schools. "Dyslexia falls under the term 'Specific Learning Disability'. The universal screening used in MNPS screens for basic reading deficits, including phonemic awareness, phonics, word reading and fluency, which are all deficits associated with dyslexia." She said that students receive intervention for reading difficulties whether or not they have an IEP.
Dyslexia Recognition Elsewhere
The Thorsens are happy to report that Clara is currently receiving the targeted intervention she needs. But their story is far from singular: Families interviewed across the country reveal that both public and private schools aren’t fully aware of the signs of dyslexia, even though it affects 5-20 percent of schoolchildren. And, once diagnosed, schools are often unsure -- or even afraid -- of how to intervene. Currently, only 30 states recognize dyslexia as a learning disability.
But, according to Nancy Mather, professor of Disabilities and Psychoeducational Studies at the University of Arizona, screening and intervention, not to mention teacher education, mandated by law is much more uneven across states.
A disconnect between laws passed at the state or federal level and district enforcement is common, Mather said, and awareness needs to be raised about dyslexia as a learning disability. In an article soon to be published in Perspectives, the journal of the International Dyslexia Association, Mather and colleague Martha Youman highlight the inconsistencies of how dyslexia is defined in different states across the U.S.:
“A number of states have spearheaded the recognition of dyslexia as a unique disorder with prevalence rates varying from 5% to 20% among researchers and national and international organizations. This effort to recognize dyslexia is crucial because, unfortunately, the terminology used to describe reading disorders varies across states and settings. Individuals with dyslexia who are diagnosed in school settings fall under the category of “Specific Learning Disability (SLD),” a category within the Individuals with Disabilities Education Act (IDEA 2004). Individuals with dyslexia diagnosed in clinical settings fall under the category of Specific Learning Disorder with Impairment in Reading as described in the Diagnostic and Statistical Manual of Mental Disorders-5 (DSM-5) (American Psychiatric Association, 2013). Both diagnoses include “dyslexia” as a descriptive term within their definitions, but within school settings, the actual term “dyslexia” is rarely used in psychological and diagnostic reports. Thus, most parents of children who receive special education services at school under the category of SLD in reading have not been informed that their child has dyslexia. Similarly, if a clinical diagnosis of Specific Learning Disorder with Impairment in Reading is made in a clinical setting with DSM-5, parents and teachers may not necessarily understand that this label encompasses dyslexia. With the hopes of separating dyslexia from a large umbrella of learning disorders, the states of Alabama, Illinois, New Jersey, Ohio, Pennsylvania, and Texas, have passed legislation for the recognition of a dyslexia day, week, or month. On such dates, schools and mental health practitioners are encouraged to educate others about the common characteristics of dyslexia, as well as the appropriate accommodations and interventions.”
“Dyslexia is the most common type of learning disability,” Mather said. “Seventy-five to 80 percent of kids with Specified Learning Disabilities (SLD) have some form of dyslexia. But states have all kinds of terminology, and labels differ from state to state, which is why in Tennessee, they said, we don’t have dyslexia. It creates confusion. The parents are told their child has an SLD, but don’t realize their child has dyslexia.”
Even among the state dyslexia laws that do exist, many don’t have much meat on the bone. Passing a law creating “Dyslexia Awareness Month,” Mather said, is nice but isn’t going to do much to help the kids who are sitting in classrooms right now, struggling to read.
“When there’s awareness, you’re more likely to get the right kind of diagnosis and the right kind of teacher,” she said, but much more needs to be done. “Teachers need more training in specific methodologies, teachers need a strong background in language structure. They need very specific training to teach students with dyslexia.”
Advocating for Intervention
Families interviewed for this story reported feelings of panic surrounding the whole issue, from trying to diagnose a failure to read, plus the maze of tests, services and interventions involved, often coming with hefty price tags. Brooklyn parent Zanthe Taylor paid $4,000 for a battery of tests for her daughter, Calliope, when her private school requested independent testing. There were free options for both testing and tutoring, Taylor found out later, but she wasn’t made aware of them. And even the free options came with hurdles: wait lists were impossibly long, and free tutors had to come from a state-approved list.
The Thorsens attempted to get Clara tested at a highly regarded dyslexia clinic in suburban Nashville for $35, but were put on a seven-to-eight-month wait list. Impatient to begin intervention, they opted for a local, private center that provided a comprehensive test in the same week for $800. Both Taylor and the Thorsens also pay for private tutors on top of help received at school.
Experts like Mather and Maryanne Wolf of Tufts University say the core of the panic and confusion from states on down to classrooms can largely be avoided with proper understanding of what dyslexia is and what it isn't. When schools and educators are properly trained on how to identify the different manifestations of dyslexia and to intervene appropriately, panic dissipates.
They confirmed that what families experienced was real, and part of a bigger picture: Many children aren’t receiving the diagnosis and intervention they desperately need to do well in school, and many families don’t have the means for expensive testing and tutoring.
“The kids don’t get any better, that’s what happens,” Mather said. “That’s the reality -- it’s the fortunate few who get some kind of help.”
Mather worked with educational software development company MindPlay to develop a three-hour video course designed specifically for teachers to better understand dyslexia.
“I think it’s important for teachers to have a basic understanding of dyslexia,” Mather said. “It makes them more empathetic, alerts them that this is a real problem. They may not realize how much it affects students’ self-esteem when everyone can read, and they can’t.”