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A collage of brain imagery and text, with the phonemes for the word dyslexia made prominent.
(Alborz Kamalizad
/
LAist)
California Has Taken A Slow Approach To Dyslexia. A Lot Of Families Have Lost Patience
The nation's most common learning disorder is thought to affect somewhere between 5% and 20% of the population.
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As you read this sentence, multiple areas of the brain are at work. Your brain interprets the squiggles on the page as letters, those letters as sounds and those sounds, put together, as words. Those words, strung into sentences and paragraphs, communicate meaning.

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Audio Version: California Has Taken A Slow Approach To Dyslexia. A Lot Of Families Have Lost Patience

People who study brains agree that when reading, the way the brain’s parts work together is different in people with dyslexia — the nation’s most common learning disability — than in people without dyslexia.

Researchers also agree that with the proper interventions and instruction, the vast majority of students with dyslexia can learn to overcome academic challenges and rise to the reading level of their peers.

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But getting there? That is where brain science, education, politics and money tangle into a knot of thorny questions. Should we screen all children for dyslexia? If so, how early? Would fewer kids end up in special education, and would it be more or less expensive, overall, if we did screen? Should we teach all children to read in the manner that is best for dyslexic children?

While these debates play out, tens of thousands of California children are not learning to read. According to the National Center for Education Statistics, 37% of California fourth graders are unable to read at a basic level. The percentage of below-basic readers is dramatically higher among low-income (49%), Black (58%) and Latino (47%) students — and, especially, students with disabilities (74%).

"That is a crisis," said Kareem Weaver, co-founder of the Oakland-based group Full and Complete Reading is a Universal Mandate (FULCRUM).

While some states have moved forward with comprehensive programs to address dyslexia and improve reading instruction overall, California's approach has been slow and tentative.

ABOUT THIS SERIES
  • LAist will examine how dyslexia screening and mitigation work across California's education system every Wednesday for six weeks.

  • Do you have an experience you want to share? We want to hear from you.

Dyslexia, Defined

Dyslexia is a way that certain brains process information that usually manifests itself in difficulty reading. This difficulty is unrelated to a person’s intellectual strengths in other areas.

Dyslexia is the most common learning disability in the United States, thought to affect somewhere between 5% and 20% of the population. The wide range reflects, in part, the fact that dyslexia exists on a spectrum from mild to severe.

People with dyslexia often have trouble recognizing letters and understanding how combinations of letters create the sounds that make up our language.

Additional ways people experience dyslexia include:

  • Trouble making quick sense of units of sound, words and ideas in sentences (fluency)
  • Minimal capacity to hold information in one's head temporarily, for example, in order to take down a phone number or address, what is known as "working memory"
  • Difficulty learning a second language
  • Frequently confusing one thing for another, like left and right
  • Poor spelling and/or handwriting
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There are many reasons why a person might have trouble with reading other than dyslexia.

A student learning English as a second language is not dyslexic. A student having trouble reading because of social or emotional issues is not dyslexic.

Dyslexia is in no way a result of laziness, or a lack of motivation. Nor is it related to one’s environment.

Dyslexia is, however, often hereditary.

From Our Community
  • LAist solicited comments from our readers about their experiences with dyslexia. You'll see their remarks throughout this story.

  • "I explained to my daughter that people with dyslexia have brains where the streets twist and wind and many end up in a cul-de-sac, making it necessary for her brain to carve out trails to get to the same place everyone else gets to."

  • — Deborah Bernstein

What Is The Neuroscience Behind Dyslexia?

If you Google “What does dyslexia look like?” you might see letters that are slightly off, entirely mirrored, or upside down, along with a whole other slew of hypothetical visual manipulations.

While attempts to depict the experience of dyslexia might be accurate for some, it is impossible to characterize what dyslexia “looks like” for everyone, because the experience of dyslexia varies across individuals.

When reading, people with dyslexia use certain areas of their brain differently and more or less frequently than people without dyslexia. Parts of their brain also communicate with other parts differently.

Rebecca Gotlieb is an assistant researcher at UCLA's Center for Dyslexia, Diverse Learners, and Social Justice.

“Generally, people with dyslexia tend to have less activation in areas of the brain on the left side that support some of the language based skills, and they have more activation in some of the areas on the right side of the brain, than do typical readers,” Gotlieb said.

With appropriate reading instruction, people with dyslexia show a pattern of activation in the brain that is more similar to people without dyslexia.

But Gotlieb made this clear — we still have a lot to learn about the biology behind dyslexia.

From Our Community
  • "As soon as we got his diagnosis he was relieved (and we were too!) because there was a name and a reason he had a hard time learning. The pain of all the years, of blame being placed on him by teachers (and honestly on us too) for his ‘bad attitude’ was not erased but eased by the diagnosis, because it was not his fault."

  • —Sabrina J.

What Should People Without Dyslexia Understand About It?

Despite the challenges, many people say their dyslexia gives them advantages in other areas.

"Oddly, I think being visually dyslexic helped my engineering career as it allowed me to see physical problems with hardware from a different point of view than my ‘normal’ colleagues," said Dale Cipra, a retired aerospace engineer. Cipra joined more than 200 people in responding to an LAist callout that asked people to share personal experiences with dyslexia.

His experience echoes a point made in the California Dyslexia Guidelines, which were published in 2017 in reaction to a legislative mandate:

"Dyslexia is a paradox; an individual with dyslexia may have weakness in decoding that results in difficulties in accurate and fluent word recognition and strengths in higher-level cognitive functions, such as reasoning, critical thinking, concept formation, or problem solving."

Many people who have dyslexia have never been formally diagnosed. Many dyslexic adults with successful professional and personal lives told us they had learned to adapt and "power through." Some, including one of our colleagues, said they've kept their dyslexia quiet out of fear that it could affect their careers.

Dyslexia does not have to derail one's ambitions — case in point, dyslexic California Governor Gavin Newsom (and so many others). But educators and neuropsychologists say it is much more effective, and less costly, to address dyslexia early in a child's education.

"Early diagnosis is especially critical for narrowing the achievement gap, which is present as early as first grade," the state's dyslexia guidelines read.

Failing to address dyslexia effectively can have major consequences for a student's education and mental health. Students with dyslexia can suffer from low self-esteem and high anxiety, especially if they don't know why they're struggling to learn.

María Daisy Ortíz remembers how distraught her dyslexic granddaughter would get in second grade when she had to read out loud. "She dreaded it," Ortíz said. "And then it's not just an educational problem, it's an emotional problem."

Cherie Dorreen said her son's self-esteem fell every day of his first grade year. "At 6 years old he wanted to die and thought he was a stupid kid," she wrote to LAist. "At home, homework was a chore, it was painful, I almost ruined our relationship with the arguments and struggles."

Other people who responded to our survey told stories of educators labeling their child as lazy, unintelligent or unmotivated. We heard from parents whose kids hated going to school, and in some stories, cycles of academic exasperation turned into misbehavior.

“People act like it is just about the letters, and whether or not they see them backwards," said Deberah Schlagel, whose daughter has dyslexia. "That’s not what it is all about. For me, it is about the self-esteem part more than anything. Giving kids the confidence to walk through the world. Your kid can tell that they are not keeping up with their peers.”

Students with dyslexia do not have to fall behind. But that requires two things:

  • Identifying dyslexic students 
  • Teaching them to read and adapt their skills for academic success

As we found out, both are controversial.

From Our Community
  • "When your child is diagnosed with dyslexia you are thrust into a very confusing world. What you want is to fix it now, but realize it will take years. But where do you start? Who do you listen to? You don't have time to make the wrong choice."

  • — Laura Gonzite

California Does Not Require Screening

Universal screening for dyslexia and other reading problems has become increasingly popular across the country. Forty states now have legislation mandating screening, according to the National Center on Improving Literacy, which is operated by Boston University with funding from the U.S. Department of Education.

There is no similar mandate to screen school children for dyslexia in California. Hotly debated, any political movement has been tied up with concerns over issues that include implementation; testing fatigue; the potential budgetary implications of expanded special education; and how to properly assess the state's large population of English-language learners.

The parent advocacy group Decoding Dyslexia CA pushed a bill in 2015 that would have required schools to screen students for dyslexia and other reading and writing disorders annually from kindergarten through third grade.

The bill also would have required teacher training programs to include instruction about how to recognize and teach to dyslexic students. It called for similar instruction for practicing teachers.

But the bill was reduced to what are now the California Dyslexia Guidelines, a 136-page document designed to help educators and parents understand how to recognize characteristics of dyslexia and how to effectively teach students with dyslexia. There is no requirement that schools have to follow what the document suggests — or even read it.

State Sen. Anthony Portantino introduced another screening bill last year, but got stuck in the Assembly education committee.

Leaders of Decoding Dyslexia are disappointed in the lack of progress on screening. "What we employ in California is a wait-to-fail approach," state co-director Lori DePole said.

"We wait until the kids are so far behind in reading and/or spelling before we then jump in to quote, ‘help,’ and that is often done through a special education placement. At that point, the likelihood of closing the insurmountable gap that has already been created is pretty slim."

The state dyslexia guidelines agree:

"Early diagnosis is especially critical for narrowing the achievement gap, which is present as early as first grade; this is accomplished by screening, followed by identification and remediation with evidence-based approaches. Early diagnosis is also critical for ensuring that students with dyslexia receive focused, evidence-based intervention leading to self-awareness, self-empowerment, and the provision of necessary accommodations for success in school and life."
From Our Community
  • "Some kids are good at reading, some kids are good a listening, and some kids don't see text or numbers the same way. Teach kids to lean into their strengths in acquiring and processing information ..."

  • —Dan Oliverio

Where Literacy And Dyslexia Meet

Advocates for early screening for reading disorders argue that doing so could drastically improve the state's rather dismal literacy rate, overall. California ranks lower than the national average in fourth and eighth grade reading levels, according to the National Assessment of Educational Progress.

"One of the greatest contributing factors to lower achievement scores in reading is the lack of early and accurate identification of students with dyslexia," the state dyslexia guidelines read.

Weaver, from the reading advocacy group FULCRUM, says the state's failure to teach all kids to read is a fundamental civil rights issue. He says that failure is also the root cause of entrenched problems like homelessness and the lack of economic mobility for many Californians. "If the kids cannot read, nothing else really matters," he said.

Weaver sees screening for dyslexia as a base from which to start improving literacy for all students.

Children with dyslexia “ … are the canaries in the coal mine," Weaver said, "because if they are able to be served in regular classroom instruction, that means 95% of kids are going to be getting what they need to thrive."

From Our Community
  • "This is a system that greatly privileges wealth, class, education, English as a first language, race, gender .. everyone we have worked with is well meaning ... the system that they are working in is very broken."

  • —Ingrid Calame

California’s New Reading Risk Tool

The UCSF Dyslexia Center has developed a tool, with state funding, to detect early signs of reading challenges in kindergarten and first grade. The digital assessment, called Multitudes, will be free for California school districts and is expected to be available for the 2023-2024 school year. Versions of the assessment in Spanish and Mandarin are being piloted.

Marilu Gorno-Tempini, co-director of the UCSF Dyslexia Center, said the assessment is designed to take about 10 minutes to complete initially. Students who have difficulty with the first part will take a subsequent assessment that will take another 20 minutes or so.

Gorno-Tempini said the assessment is based on the most current neuroscientific knowledge around reading disorders and will be tweaked as scientists learn more. She hopes the tool will more accurately identify students’ reading problems than current tools.

It will not diagnose kids for dyslexia, she clarified.

"I don't want to identify anybody as dyslexic when they're in kindergarten and first grade. I want to identify them as at risk," she said. "But I want to be able to make sure that they get that intervention that they need so they are not going to get in special education in third grade."

First Assess, Then Fix

California Dyslexia Guidelines: "Evidence from decades of scientific research has shown that with appropriate, intensive instruction, students with all but the most severe reading disabilities can be effectively taught in the early grades so that they stay on track toward academic success."

Assessing students for dyslexia and other reading challenges is step one. Addressing them effectively so that dyslexic students can thrive is step two.

Some school districts, including Los Angeles Unified, already carry out early assessments for reading challenges. But many parents of dyslexic students aren't satisfied with the response to those assessments, here and across the country.

Ortíz, whose granddaughter Jocelyn is in 11th grade at Benjamin Franklin High School in Highland Park, said she's sued the district three times during Jocelyn's schooling to get her appropriate help with her dyslexia. The first time, she said, was after Jocelyn, in second grade at the time, was not progressing in reading even though she was getting extra tutoring in a small group.

'What they were offering her was not helping," Ortíz said.

She then got outside tutoring for Jocelyn in what is known as "structured literacy," an approach considered the gold standard for teaching students with dyslexia to read and, many advocates say, for teaching all students to read.

California Dyslexia Guidelines: "The content and principles of instruction that are components of Structured Literacy approaches are essential for students with dyslexia but can also be useful to students without disabilities."

Later, when Jocelyn was in fourth grade, Ortíz said she again contacted a lawyer to push the district to give her granddaughter services at one of LAUSD's Intensive Diagnostic Education Centers, which also uses a structured literacy approach. "In two years, she rose three levels," Ortíz said.

But Ortíz said most Latino parents, especially monolingual Spanish speakers, do not know what kind of services to ask for.

Dozens of other parents told LAist that they had struggled, or are struggling, to get their children appropriate services to address their reading problems. Many well-off parents resort to paying for expensive outside assessments and tutoring.

One parent said they had spent more than $400 a week on tutoring for their first grader, and close to $10,000 for a special education advocate to intercede with the school district.

Many parents said they had given up careers and uprooted their lives to help a child with dyslexia. Maricruz Sánchez said when she saw that her oldest son Matthew was struggling to learn in kindergarten, she started volunteering every day in his classroom to make sure he did not fall too far behind.

"I kept volunteering until he was in sixth grade. It was getting very overwhelming," said Sánchez, who has two other children close in age to Matthew.

Dyslexia and reading advocates, including Weaver from FULCRUM, say the core problem is that most classrooms do not use a science-based approach to teach reading. (To learn more about the "reading wars," check out this reporting from our colleagues at APM Reports.)

"We assume that if [students] don't get it right away, they will get it over time,” Weaver said. “But what we are really saying is those with money will get the tutoring when they realize there is a crisis and those without money will be left in the bottom of the barrel arguing about what's wrong and who's to blame and what the root cause is, when the reality is we are just not teaching them how to read."

From Our Community
  • "I read and write slower than the average student. That does not mean I have a lower comprehension than the average student."

  • —Madison Burton

Progress, Slowly

UCSF's Gorno-Tempini said teaching reading effectively in the general classroom isn't the end-all answer for dyslexic students. "There is a systematic way of teaching reading that should be, I think, the way of teaching reading to everybody," she said. "That's not going to be enough for dyslexic kids. … Dyslexic kids are going to need an extra dose of this or that."

Gorno-Tempini said UCSF plans to also use the new assessment tool to collect information about how schools teach reading in order to have data on what works and what does not.

In the meantime, dyslexia advocates are encouraged by the state's progress in some aspects of improving teaching for dyslexic students, including the state guidelines. The state Commission on Teacher Credentialing is in the midst of incorporating the dyslexia guidelines for evidence-based reading instruction into new teacher training.

DePole, of Decoding Dyslexia CA, is also encouraged by a recent settlement in a lawsuit filed by parents of struggling readers against the Berkeley Unified School District. The settlement requires the district to implement universal early screening for risk of reading disorders and to redesign the way it teaches reading in general and special education to better align with research-based practices.

"If done right,” DePole said, “this could be a huge example of how we should be handling and addressing reading in a school district."

Part 2: The Realities Of Early Childhood

LAist reporters Julia Barajas, Mariana Dale, Robert Garrova, and Kyle Stokes contributed to this story.

Resources

Dyslexia Resources
  • I want to know more about dyslexia ...

    • California Dyslexia Guidelines — Comprehensive guide from the California Department of Education to help educators and parents identify, assess and support students with dyslexia.
    • International Dyslexia Association — membership-based organization that hosts conferences and workshops, and publishes self-assessments and fact sheets on everything from the neuroscience of dyslexia to how to apply for accommodations on college entrance exams. It also publishes some resources in Spanish.
    • International Dyslexia Association, Los Angeles Branch — hosts teacher trainings, conferences, and provides grants to support dyslexia programs in local schools. Published fact sheets on dyslexia in English and Spanish.
    • California Dyslexia Initiative Free Webinar Series — hosted by the Sacramento County Office of Education and funded by the California Department of Education. Also publishes professional development resources for teachers.
    • Learning Disabilities Association of America: Comprehensive informational resources for parents, educators, and adults. Recommendations for helpful apps, programs, and teaching materials. Also provides advice for folks who have just learned they might have a learning disability.
  • I want to know more about laws regarding dyslexia and special education ...

    • AB-1369: California Dyslexia Guidelines — under the guidelines, the state Superintendent of Public Instruction is required to provide technical assistance in implementing the guidelines to parents, teachers, school administrators and faculty members in teacher training programs.
    • SB-237: Dyslexia Risk Screening — this bill has not been passed.
    • Individuals with Disabilities Education Act (IDEA) — IDEA requires school districts to provide a free appropriate public education in the least restrictive environment for children with disabilities. The federal IDEA website has resources for families, including information on individualized education plans (IEPs) and dispute resolution.
  • I want to connect with other parents or dyslexia advocates ...

    • Disability Rights California — engages in legal and policy advocacy, and publishes resources for individuals with disabilities and their families.
    • Decoding Dyslexia CA Parent Support Groups — Decoding Dyslexia, a grassroots organization made up of families affected by dyslexia and educators, has parent support groups that meet regularly across California.
What questions do you have about early childhood education and development? What do you want to know about kids ages 0-5 and those who care for them in Southern California?
Decades of research indicates early childhood education significantly boosts children’s readiness to learn. Mariana Dale wants families, caregivers and educators to have the information they need to help children 0-5 grow and thrive by identifying what’s working and what’s not in California’s early childhood system.