‘We’ve Been Hurt So Much’ — How Undiagnosed Dyslexia Can Affect Learners Their Whole Lives
Educators say unaddressed learning disabilities overwhelm and frustrate students, sometimes leading to behavioral problems. Studies have shown a disproportionate number of incarcerated people are likely dyslexic.
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Sitting inside a coffee shop in South L.A., 28-year-old Irving Álvarez recalled when he started struggling in school. It was around third grade when he remembers finding it difficult to process combinations of letters and numbers. That made math homework his worst enemy, and he would be punished time and time again in middle and high school for not keeping up with his assignments.
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“They would put me in timeout inside the classroom. They would get my desk and move it all the way to the corner... And constantly I was getting bashed out for not being able to be at a standard of a cookie cutter like every student is,” Álvarez said.
That hurt Álvarez not only for the punishments, but also for having to watch his mom do his homework because she didn’t want him to get in trouble. He said he knew there was something different about his learning, but he didn’t know how to explain it. And his teachers weren’t much help.
“They would see it as a constant problem,” Álvarez remembered. “They wouldn’t see it as we need to find a solution; what’s going on behind this or why is he not learning?”
What About Dyscalculia?
Dyscalculia is a learning disability that affects how students learn math. People living with dyscalculia could have problems recognizing numbers and difficulty connecting numbers with words. Without a formal diagnosis, it’s impossible to say whether Álvarez has dyslexia or dyscalculia.
These days, Álvarez works as a youth coordinator with the Brothers, Sons, Selves Coalition, which has the mission of ending the criminalization of young boys.
At 21, Álvarez found himself incarcerated in the California State Prison system, an outcome he in part traces back to his difficulties learning in school.
“Actually, being inside of prison — I talked to my counselor and my mental health specialist that I had in there — and they came to the conclusion that dyslexia is what’s causing this,” he said.
While what Álvarez received in the prison system wasn’t a formal diagnosis, he believes dyslexia is what he has been living with all these years, he just didn’t have a name for it.
Researchers 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. This special series from LAist investigates how California's education system — from early childhood to college to adulthood — can achieve that goal.
Álvarez’s experience is common. There’s a dearth of studies looking at dyslexia and its links with incarceration. A two-decade-old study of people incarcerated in Texas prisons found that roughly half were probably dyslexic.
Kelly Rain Collin, an education liaison with L.A. County’s Juvenile Mental Health Court, works with youth caught up in the criminal justice system to get disabilities like dyslexia identified and individual learning plans set up to intervene.
Irving Álvarez
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Robert Garrova
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“If the learning disability is not effectively addressed, which is what we see very frequently... by junior high, these kids are starting to give up, they are starting to become truant,” Collin said.
“By high school, they are feeling like, ‘why bother?,’” she said.
School districts often make Collin’s work difficult by refusing to apply learning programs tailored for dyslexic students, she explained. Collin and her colleagues also have to work with students and their families to overcome the stigma associated with special education.
LAist solicited comments from our readers about their experiences with dyslexia. You'll see their remarks throughout the series.
“Dyslexia... it hides. It is so difficult to pin down. And so many people make excuses for it: it's laziness, or you're distracted or so many things. And it can go under-treated and under-recognized. And that does everybody a disservice.”
—Jonelle Bruno of San Gabriel
“Quite a few teachers discussed dyslexia [as if it] was like the Easter Bunny or Santa. It was like you either believed in it or you didn’t,” Elementary School Special Needs Coordinator Teresa Baldwin told LAist.
Baldwin’s family calls her “The Dyslexic Whisperer” because she can easily spot the signs in people of any age. She had to fight to get support for her own dyslexic child and in her work she regularly hears from teachers who have little to no training in identifying or addressing dyslexia.
“You end up with a lot of kids who either end up becoming the bully or the class clown... Because they have to emotionally compensate for being made to feel foolish and less-than every day,” Baldwin said.
A 2018 law requires federal prisons to screen for dyslexia. But California prisons aren’t required to do dyslexia assessments.
“Although CDCR [California Department of Corrections and Rehabilitation] does not screen for dyslexia… CDCR offers additional resources, including differentiated instruction, and peer tutoring and assistance from a reader, scribe or word processor,” Terry Thornton, Deputy Press Secretary at CDCR told LAist in an email.
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How Unaddressed Learning Disabilities Ripple Through Adulthood
'Early Assessment. Early Intervention.'
Maryanne Wolf, Director of UCLA’s Center for Dyslexia, Diverse Learners and Social Justice said she’d like to see dyslexia screening across the criminal justice system.
“A great number of our incarcerated individuals first failed because they were called a failure and they didn’t understand and no one understood what to do about them,” Wolf said.
“Quite a few teachers discussed dyslexia [as if it] was like the Easter Bunny or Santa. It was like you either believed in it or you didn’t.”
— Elementary School Special Needs Coordinator Teresa Baldwin
Wolf stresses that dyslexia should not be viewed as a curse, but rather a different brain organization that is highly beneficial if understood.
Solutions for her are clear: “Early assessment. Early intervention. And educating our teachers about all of this. That will help us not have so many fall through the cracks,” Wolf said.
A 2020 report on the economic impact of dyslexia on Californiapublished by Boston Consulting Group in collaboration with the UCSF Dyslexia Center reads: “By addressing the learning gap before it widens, we can reallocate what is currently spent on serving the disproportionately high numbers of dyslexic individuals within the welfare and criminal justice systems to education budgets statewide.”
TIPS FOR GETTING A FREE OR LOW-COST LEARNING DISABILITY ASSESSMENT
Check with your college disability center. (Don't know how to contact them? Try searching this database.) If they don't offer free or low-cost evaluations, ask whether they have a vetted list of providers and whether any of them offer evaluations on a sliding scale (meaning you pay what you can afford).
Check with your health insurance provider. Your policy may, or may not, cover an evaluation.
Call 2-1-1, a call center designed to help people find local resources for health care, housing and other essential needs; or search their resource directory online.
Read about more options researched by Understood.org.
At the coffee shop in L.A., Álvarez said that’s all something he wishes he would have had back when he was in school.
“One of the biggest things I will take from this is that I still haven’t graduated high school. And I’m 28 right now... A lot of times I see that we’ve been hurt so much or we’ve been shamed so much over not being diagnosed,” Álvarez lamented.
Álvarez is still trying to find someone who can give him a formal diagnosis. Then maybe he can finally get that high school diploma.
LAist reporters Julia Barajas, Mariana Dale, Jill Replogle and Kyle Stokes, and engagement producers Adriana Pera and Stefanie Ritoper, contributed to this story.
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.
Campus Disability Resource Database - searchable database with contact information for disability resources at some 4,000 U.S. public and private colleges and universities
Generation Patient - support and advocacy for young adults with chronic medical disabilities
Terms To Know
Dyslexia Terms
Phonemes: The smallest units of sound that make up words. For example, while the word “car” is spelled with the letters c-a-r, the phonemes involved are “/k/” and “ar,” or /kar/.
Phonological awareness: An individual’s awareness of and access to the sound structure of oral language. It is the understanding that spoken language can be divided into smaller units (i.e., words, syllables, and phonemes) and that those units can be identified and manipulated.
Phonological processing: The ability to understand, mentally store, retrieve and change speech sounds. Someone with a phonological processing deficit has a hard time segmenting written words into smaller parts.
Decoding: A skill used to break words down into syllables and phonemes.
Fluency: In reading, fluencyrefers to the ability to read a text accurately and quickly, focusing on comprehension instead of decoding.
Dyslexia: A learning condition that affects how a brain processes language, which usually manifests itself in difficulty reading. People with dyslexia often have trouble recognizing letters and understanding how combinations of letters create the sounds that make up our language.
Dyscalculia: A learning condition that affects a person’s ability to do math, and can make math take longer. Dyslexia can also affect math.
Dysgraphia: A learning condition that involves difficulty with writing — handwriting, typing, and spelling. Like dyscalculia, dysgraphia has a high rate of co-occurrence with dyslexia.
Education Terms
IDEA: The Individuals with Disabilities Education Act. Federal law that requires students with disabilities to have access to a “free and appropriate education,” including additional services or accommodations.
IEP: Individualized Education Plan. A plan developed by a support team to ensure that a child who has a disability identified under IDEA and who is attending an elementary or secondary educational institution receives their education in the least restrictive environment. Children receive a support team that also includes a child’s parents and at least one special education teacher and usually a general education teacher; a school district representative; and other various experts and representatives as necessary.
Specific learning disability (SLD): One of the 13 disability categories identified in the IDEA. If an individual has an SLD, it means they can have trouble understanding or using language, spoken or written, that may make it difficult to listen, read, write, spell or do mathematical calculations. Dyslexia qualifies as a specific learning disability.
Multi-Tiered Systems of Support: A series of gradually escalating responses to students struggling in class. This is an umbrella term for the many options for services available to school districts, and is focused on all students, not specifically students in special education.
Neurodiversity: The idea that all brains interact with the world differently, supporting the notion that there is no one “right” way of neurological thinking or behaving.
Sources: California Dyslexia Guidelines, U.S. Department of Education
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