The federal government recently reminded school districts that they are allowed to use the word “dyslexia” when documenting a child’s special education needs. For you lay people, that’s like your doctor being reminded that she can use the word “insomnia” when you routinely cannot sleep. They may prefer the term “sleep disturbance” but they’re allowed to say insomnia. Regardless of what word your doctor uses, you are most likely to respond, “No shit, Sherlock.”
Now, not all learning disabilities are dyslexia, just like not everyone who has a hard time sleeping is suffering from insomnia. But the bottom line is the same: I don’t care what you call it, please help. But what if the term your doctor used dictated what sort of treatment you received? Then you’d get super picky about the word choice, right? Or would you? Do you know enough to be picky? Do you even know what the treatments are? How much do you care about the root cause of your sleep problems?
Now imagine the patient is your child, and the issue is your child can’t read. Would you want to know why?
According to understood.org, it is estimated that about 85% of students with learning disabilities have dyslexia, alone or in conjunction with another disability. That’s about 20% of the general population depending on whose statistics you use. As it stands currently, schools are not required by federal law to identify the reason your child cannot read. They are required to take you seriously when you ask them to take a stab at it. They are required to take a stab at it, but how they do that is almost entirely up to them. Many schools use the discrepancy model, which tests students’ IQ and academic achievement, and then looks for a discrepancy between the two. If the testing shows your child has average verbal/nonverbal skills (about 100) but their decoding, fluency and/or comprehension is below average (85/ one standard deviation from the norm/ think middle of the bell curve), then they could be classified as having a specific learning disability. This is the traditional method of diagnosis, and one that is still used in 39 states.
Our current evaluation process is the educational equivalent of a “Check Engine” light. It tells you something’s wrong, but very little about what’s going on under the hood.
There are more specific assessments, but schools are not required to administer them. You have to get a private evaluation for that, which will run you about $5,000. If this were healthcare, you’d look in-network first, right? Here’s the thing about staying educationally in-network: Not only are schools not required to administer subtests that could give more insight into a reading problem, schools are also not required under federal law to have an educator on staff trained in teaching children with dyslexia how to read. (which they can totally learn how to do if taught properly early enough) It’s up to each state to determine how their teachers are trained. New York State currently has a bill in committee that would require teachers be trained in identifying and educating students with dyslexia. The bill also requires that evaluation be based on current scientific understanding of dyslexia, and that team members making instructional decisions be knowledgeable about dyslexia.
That means none of these things is required right now.
It is the equivalent of taking your check engine light to the garage only to find there is no mechanic. And unless you’ve got a couple grand lying around for a private evaluation, you have to stay educationally in-network. If you’re lucky, the school offers to provide your child with extra reading support, hopefully with a reading specialist, with or without testing for a learning disability. This approach is called Response to Intervention (RTI) and it does use scientifically-based programs to help remediate reading issues, but not necessarily programs specifically for dyslexia. Because RTI doesn’t require a specific diagnosis for a student to participate. It is supposed to allow for faster identification and remediation of students at-risk for poor learning outcomes, but in many cases it simply delays the inevitable. As of 2004, RTI can also be used to legally classify a student with a specific learning disability in all 50 states instead of the discrepancy model, but that assumes the person administering the intervention is familiar with identifying dyslexia. Again, they are not required to have that kind of training. And if RTI doesn’t work? Then you can get that evaluation that isn’t required to identify the causes of your child’s reading disability. You’ve just wasted 1-2 school years, and your child still can’t read.
No, this process does not result in failure every student who receives services within it. No, not every student who needs extra reading support has dyslexia. And, no, not every school takes short-cuts in the assessment process. There are school officials out there who genuinely care, and allocate resources accordingly. There are teachers who take their role in identifying and treating students with dyslexia seriously. There are professionals in our schools who have been using the term dyslexia for years.
BECAUSE THEY HAVE BEEN ALWAYS BEEN ALLOWED TO.
Words do matter. They are powerful. But this recent federal reminder is simply semantics. I’m more interested in why school districts have avoided using the word and what they will be required to do about it.