Two Out of Three Children With Dyslexia Are Never Diagnosed. Here’s Why

In 2012, researchers Chiara Barbiero and colleagues studied over 1,357 fourth-grade Italian students. They discovered that roughly two-thirds of the students with dyslexia had never received an official diagnosis. This research, published in PLOS ONE, began in school classrooms, where children were already learning to read, and teachers were already watching their progress

If a child isn’t struggling in school or is able to work around reading difficulties, then dyslexia often goes unnoticed. Human beings have a way of working around certain obstacles, and it’s surprising for many parents when their child gets a dyslexia diagnosis, even if, in hindsight, there were obvious signs.

How many children with dyslexia go undiagnosed?

According to a study by Barbiero and colleagues, roughly two-thirds of children with dyslexia had no prior diagnosis.

Barbiero’s study used classroom screening as an initial step to identify children who would then go on to receive an individual assessment. This is often used as part of the diagnostic process when a child has failed multiple attempts at reading.

In a 2023 study, Cassidy, Reggio, and Shaywitz screened 246 children at two New Orleans public charter schools. Cassidy et al found that 121 students, or approximately 49.2%, were identified through the screening. Following this screening, of the 92 students who received subsequent assessments, 57 (62%) demonstrated profiles consistent with dyslexia.

Needless to say, dyslexia is much more prevalent in the general human population than many people realize, and thus, is often undiagnosed and left unaddressed.

What does undiagnosed dyslexia look like?

Undiagnosed dyslexic students often read at a slower pace and use spoken responses that are far superior to their written responses. Spelling difficulties can also be a sign of a propensity for dyslexia. In some cases, students flat-out refuse to read, and in others, they cannot complete their work without assistance from others.  While these types of behaviors would certainly warrant further investigation into the possibility of dyslexia, they do not, by themselves, constitute an official diagnosis.

A parent might see that:

• The student often pauses when reading aloud.
• An unfamiliar word is significantly harder for students to read than a familiar word.
• Changes in spelling occur from a practice activity to completed written homework.
• Intense procrastination or avoidance of reading assignments and homework.
• Ideas on the page don’t translate to spoken explanations
• Completed work depends heavily on an adult reading alongside the child.

IDA’s guidelines for assessing an individual’s learning difficulties identify difficulties with unfamiliar words and with comparing spoken and written language. What matters is whether those struggles keep showing up. A handful of frustrating afternoons tell you less than a pattern of difficulty that continues even with instruction and support.

Why does dyslexia go undiagnosed?

Dyslexia may remain unidentified if a student has developed a way to compensate for reading difficulties. There are certain stereotypes about what dyslexic children are like and how they might act and behave, which can also have an influence. Below are some of the main reasons why dyslexia goes undiagnosed.

Smart children compensate for reading difficulties

Students may recall a well-known passage or rely on the surrounding sentence in order to recognize unfamiliar vocabulary. Students’ speaking skills can be deceiving at times and can even lead them to successfully complete an assignment quickly.

Think about the comparison of having your child tell you about a science lesson vs. that same child reading their science book alone. Your child may do a wonderful job explaining the science lesson after they were taught it in class, but that doesn’t tell you anything about their ability to read the words that exist in the textbook.

Schools may wait for a bigger academic gap

The discrepancy model previously in use looked for a large gap between a student’s intellectual ability and academic performance. But there were obvious issues with this.  A student could struggle for years before that gap was considered wide enough to prompt an evaluation. By then, they might already be well behind their classmates.

Under current Federal IDEA legislation, states are prohibited from requiring a severe, or even a moderate, discrepancy to identify a specific learning disability.

Letter reversals get too much attention

Most people think of writing or reading letters backward when they think about dyslexia. But according to the IDA, this is a myth. Whether a child reads or writes backward doesn’t really matter, as there are other symptoms and difficulties that can be attributed to dyslexia.

For example. children may have difficulty sounding out what they hear. They might have trouble separating one word from another when hearing both together and then connecting the sounds they heard to letters. There are many causes and types of dyslexia, which many fail to understand.

Reading avoidance looks like poor effort

A child who feels that, when they read, the whole class is secretly making fun of them may refuse to start a task.  Adults sometimes interpret this anxiety-driven avoidance as laziness, when in reality it’s driven by fear. The response then becomes another conversation about trying harder, while the actual cause of the issue, difficulty reading and understanding text, remains.

Identify where the resistance is coming from. Does the child engage with you when you read aloud to them, but then disengages when they are expected to read on their own? That’s an important difference.

Which children are most likely to be missed?

Children whose reading difficulties are masked by other strengths or attributed to other factors may be overlooked. For example, this could include an individual with strong comprehension skills but a slower reading rate, as well as individuals from economically disadvantaged backgrounds whose challenges are often attributed solely to economic disadvantage. Furthermore, according to the Yale School of Medicine, girls often require equal attention to dyslexia that they do not receive. This is because dyslexia is often associated with unruly boys who make trouble, rather than with the general population at large.

According to Cassidy et al., approximately 90% of the students assessed in the Cassidy study were African-American, while over 90% of the student population qualified for free lunch. According to the researchers, may be underdiagnosed among minority students”

A child’s economic background matters during an evaluation. But it should not become the default explanation for every reading struggle. A child can experience economic hardship and also have dyslexia. Assuming one explains everything can leave the other in doubt or unrecognized.

For parents, these distinctions can make a school conversation more productive:

At what age is dyslexia usually diagnosed?

Dyslexia may be identified during the early school years, but some people receive a diagnosis much later. The studies discussed here do not establish an average age at diagnosis for dyslexia. Children should ideally be screened at the start of kindergarten so that dyslexia can be addressed as early as possible.

What to do if your child’s school says they are not dyslexic but you have doubts

If the child’s school states that the child does not have dyslexia but the child continues to struggle with reading, ask the school how they reached that conclusion and whether they can provide evidence. Ask for copies of assessments and request an alternative written summary of a full, comprehensive evaluation. A screening may indicate potential risk, whereas a full assessment would examine all aspects of reading and learning history to identify the specific problem.

You can bring samples of the child’s work that required significant assistance from someone else, or provide documentation of how long it took the child to complete a task.  You should also ask the school about the type of reading instruction they provide and how they measure the child’s progress. Lastly, you should ask the school when they plan to review the results with you.

FAQ

 Can a child have dyslexia and still get good grades?

Yes. Grades do an excellent job of hiding all the hard work it takes for your child to read well. Your child may be relying solely on their memory, class discussion, or parents’ help to complete their schoolwork. If you want to see whether there are other problems to address, look at what lies behind those good grades. Slow reading and too much dependence on adults to complete homework should be considered as a potential problem regardless of whether your child’s grades indicate otherwise.

 Does a child have to reverse letters to have dyslexia?

No, and this is a common stereotype and misconception.  Writing letters backward is not a requirement for dyslexia, and letter reversals alone do not establish a diagnosis. That a student writes his letters the correct way, yet struggles with sounding out words or reading smoothly, tells you much more about that individual’s ability to read and write than the order in which those letters are written.