Are we thinking about dyslexia the wrong way?
September 23, 2020 4:23 PM   Subscribe

Sirin Kale has written a lengthy article in The Guardian revealing new research and new conversations around dyslexia. Kale talks to experts both iconoclastic and established in a report inspired by a local controversies in Staffordshire and Warwickshire of how to classify and respond to the diagnosis of dyslexia.

Kale's article suggests we may be misconceptualizing the condition in ways that can harm children, particularly disadvantaged children.
posted by zeusianfog (9 comments total) 15 users marked this as a favorite
For Elliott, this is not just a matter of scientific accuracy. He also believes that the current system entrenches inequality, because children from poorer backgrounds tend to be less likely to be diagnosed with dyslexia. “Reading difficulties are real. I’ve seen thousands of kids with reading difficulties,” he told me. “You know what? Very few of the ones I saw in the inner cities, in the council estates, get diagnosed with dyslexia.”

This part jumped out at me, particularly considering how many educational resources rely on specific diagnoses in order to be unlocked for particular struggling students. Through this lens, diagnosis becomes a tool to reinforce of the social hierarchy, and it's no wonder people get angry and push back on that idea.
posted by mhoye at 4:54 PM on September 23, 2020 [14 favorites]

Great article. A similar debate occurred/is occuring in America. It's not really new, dating back to the 90's at least and being reflected in the post 2000 revisions of the IDEA (American federal law governing educational disability). Some of the terms and titles are different, though. The professionals described in the article who assess students for specialized instruction are likely called "school psychologists" in America; although Texas and I think California uses a different term. Also, students with dyslexia in America likely would receive services under the legal category of "specific learning disability".

It's just differences in terminology and professional titles, though. The debate is similarly heated, and old.
posted by eagles123 at 9:28 PM on September 23, 2020

I ran into this inequality with learning disability diagnosis recently with a friend I've been informally tutoring on the side for a licensure exam.

She's in her early 50s Black, smart. She works so hard. She takes copious notes. She does discussions, study groups and extra classes. She can read, but even with years of practice it is a slow process with word mistakes and it exhausts her. Exhausts. I watch her during multiple choice exams and 15 questions in she's so taxed by the reading that she stops trying to find the answers . In addition she runs out of time of the exam every time, even with practice. Meanwhile if I read them aloud, she can do 50, 60 questions before her she gets tired.

She was never tested for any type of learning disability, she's never even concidered that there might be something making things harder than they should be. But I do know she will have difficulty making it through the exam without extra time or some other types of support. I think she's be great in the role, but I have doubts she'll get there.

Is it something neurological? Is it a highly underfunded, segregated school system that she attended as a child? Is it that when she was in school there wasn't nearly as much recognition of reading difficulty? Is it her race and just outright discrimination? Are all these questions tangled together in some sort of convoluted web? Probably. Regardless, it is not her fault.

I do know that she has aspirations, goals and the skills to do what she wants. There's abosultely no reason that her specific difficulties should keep her from getting it. So I spent some time writing letters and explaining how to access accommodations, who she would need to talk to, what the process is, how to navigate through insurance, a bunch of stuff. She'd never heard of any of it before.

Meanwhile my wife is from a similar area, close in age, and white. She managed to have a diagnosis . She managed to get tons of support. She got to take tests verbally through lots of her schooling. She got extra time on assignments and work.

I hope my friend can get the accommodations she will need for the exam.

Is there work on trying to redefine or break down dyslexia into more specific cataorgies? This isn't my field at all, and I'm not really sure. I don't think figuring out that people's real difficulties got lumped together, that testing for it was based in discriminatory criteria means we shouldn't have a diagnosis for it, but maybe it needs to be more specific of its catching a wide variety of symptoms? I would think that particular difficulties being highlighted would help direct an approach that is more useful. What that means and how that would work I have no idea.
posted by AlexiaSky at 9:42 PM on September 23, 2020 [13 favorites]

some experts have begun to question the existence of dyslexia itself

According to Elliott, we should stop using the word dyslexia

He felt the guidance stated that dyslexia didn’t exist. “If you’re telling me that dyslexia doesn’t really exist, I’m afraid my everyday experience of life says you’re wrong.”

So much of the opposition described in the article seems like a response to that framing. For many people, hearing that dyslexia isn't real is like hearing that their struggles aren't real, that they're just stupid or just didn't work hard enough. If what they're saying is that dyslexia should be understood as an umbrella category for all kinds of reading difficulties - that the simple fact of having reading difficulties of any kind means that you have dyslexia and should therefore receive the relevant interventions - then they should really sharpen that message.
posted by trig at 3:23 AM on September 24, 2020 [10 favorites]

trig, exactly. I have pretty severe ADHD that wasn't diagnosed until I was 41 and I am very sensitive to someone saying ADHD "doesn't exist" because I know exactly how much I would have benefitted from an earlier diagnosis and how hard I was working before treatment to approach some semblance of normal, and how the disorder makes you look "lazy" when really you're putting more effort than everyone around you.

But if things were presented differently -- if someone said, let's screen all kids for executive function disorders and make sure they get the individual attention and interventions they need, then YES, I'm fully on board with that. ADHD is an imperfect label for a variety of executive function disorders that overlap with other disorders, but that all need to be treated via a similar paradigm of assessment, treatment, and coaching. I'm sure there are a few different ways to be dyslexic/have trouble with reading, with the common factor being that all of these kids need individual attention that others do not. And reading is important enough to have that be a required resource in every school.

AlexiaSky, your friend's story is familiar. I used to volunteer with an adult literacy program, and after seeing their successes I trust their evaluation of the problem. They explained it like this -- some people don't have an ear for music and while anyone can learn to play an instrument, these folks just need more practice to do so. Some kids are like this with reading, and it's usually that they have problems making the letters-sounds connection. If these kids get some extra phonics training with some individual attention to help them through, they learn to read just as competently as everyone else. But instead, and most often when these kids are minorities because biases come into play, they're seen as lazy or unwilling to try. This is leads to exactly the opposite of a good learning environment , and the kids never catch up. All of our clients were minorities, and a large proportion had been in prison, and they would go from sounding out c-a-t => cat to reading Fahrenheit 451 as they moved through the program. It shouldn't be like this. Kids should just all be screened for reading difficulties and resources for providing extra attention and help should be available in every public school for kids who need it as a requirement for being considered a school eligible for public funding.

If you're not good with music you probably won't join the band, and if you're a little uncoordinated you'll probably not join the track team, and that's just fine and no one sees that as a personal failing. There should also not be a stigma if you have this kind of problem but it happens to be with reading. The problem is that reading is so vital that kids can't just not participate in that part of school -- the schools need to be required to provide the extra resources for these kids.
posted by antinomia at 4:49 AM on September 24, 2020 [8 favorites]

Echoing all of this, I wonder if they couldn't just expand the definition of dyslexia to cover all issues with reading and writing. It avoids discounting anyone's experience, but acknowledges that the diagnosis has been used as a means of cementing privileges and class structure.
posted by Hactar at 5:46 AM on September 24, 2020 [1 favorite]

Retired school psychologist here. There is a model (at least in the U.S.) of identifying and intervening with students who are failing academically that does not require language about disability. Basically, students are screened for difficulty and, if they are not making adequate progress, they are provided with interventions, which start in the regular classroom but can ramp up to special education services of appropriate individualization if needed. If you want to know more, here's a one site to explore.

The school district where I worked started trying this is the 1990's, and I know that the entire state of Iowa was doing it. I've been retired long enough that I don't know what's happening now, but I can tell you that attempts to put this model in place may be met with pushback from regular and general education teachers, from state departments of education, and from parents. One thing underlying this resistance is the tendency of the U.S. special education system - I can't speak for other countries - to be most welcoming to students who can be considered to have medical/physical/neurological issues underlying their school failures. "Dyslexia" is something the child has; if you take the emphasis off that, and put it on "we haven't figured out how to teach this child to read", the onus for change is on the school system.

Also, it's not surprising that the labels that given to children vary by race and socioeconomic status. One of the first professional articles I read in graduate school - sometime in 1975-6 - studied the differences between students labeled as "minimally brain damaged" and "cognitively disabled" in a large suburban school district. There was no significant difference between their test scores. White kids were labeled MBD (today they might be considered to have ADHD). The cognitively disabled kids were African-American.

None of this is to say that dyslexia - a brain-based condition making it hard to learn to read - and ADHD aren't real things. But if we focus our attention on only those students who fit test-based and medical criteria, we are harming a number of students academically, socially, economically, and emotionally.
posted by ALeaflikeStructure at 9:09 AM on September 24, 2020 [3 favorites]

> There is a model (at least in the U.S.) of identifying and intervening with students who are failing academically that does not require language about disability. Basically, students are screened for difficulty and, if they are not making adequate progress, they are provided with interventions, which start in the regular classroom but can ramp up to special education services of appropriate individualization if needed.

But this kind of approach doesn't work so well for those who are privately struggling and frustrated but able to eke out passing grades. I knew as a child that there was something wrong/different about the way I couldn't understand certain things in math and science, and literally no-one believed me. I was way above grade level in reading/spelling/language, so I was able to cobble together enough ways to compensate that I was merely scolded for "not working up to ability" in math class, even though I actually felt like I was losing my mind. I didn't hear the term dyscalculia until I was an adult, and my understanding is that it's even less well-defined than dyslexia is.
posted by desuetude at 11:08 AM on September 24, 2020 [6 favorites]

desuetude, YES. I wonder how different my schooling would have been if I had been taught math the way my kids were, with varying ways of finding the answer vs. the One And True Way Of Math that we were stuck with in the 70s and 80s.
posted by cooker girl at 10:17 AM on September 26, 2020

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