The Benefits and Drawbacks of a Dyslexia Diagnosis

A diagnosis of dyslexia can be a relief, but it's also the start of a long journey of identity as a dyslexic person.

Hey everyone, we're Nick and Sonja and this is Dyslexia Journey, where we discuss topics to help you support the dyslexic kid in your life. Alright, today we're going to tackle the topic of identity as a dyslexic. Now this is obviously a topic with lots of different areas of discussion, lots of ramifications, and we're really only going to be able to scratch the surface today, but this is an important topic that we wanted to start covering as part of Dyslexia Journey.

And again, this is really just the first of, I'm sure, many episodes where we're going to be delving into this. Hopefully sometimes with some other experts on too, who may have something to say about how all this plays in. So, I think often the identity aspect as a dyslexic starts with diagnosis, you know, that it specifically is dyslexia. And so that can feel like a relief, like maybe it's felt like something's wrong, but you don't know what.

Or like if a child has been feeling dumb in school, often they've been feeling stupid, like, oh, I'm just not as smart as these other people. They can read already and I can't read or whatever. I think in that case, it often is a big relief to realize, and at least the way that our child was diagnosed, they were very clear about really establishing that, like, this is a very specific brain difference disability that is not related to how smart you are.

Like, you're still smart, you are smart, but you also have this learning disability. Right, which of course that starts to get into some of the nuances already, right? Calling it a disability, but we'll get into that soon. And so the other important part, I think, is that, wow, it opens up this whole world of accommodations also, which is so important and essential.

People understanding more what's going on, like maybe the kid had a teacher who thought they just weren't paying attention or something like that, and now the teacher's going to understand, oh, this was going on. And so there's a lot of, like, really relieving kind of things that come along, I think, with diagnosis. On the other hand, and the identity aspect, you know, it's, you could think of it as a label, right?

So, and when we talk about things as labels, that sort of maybe has more of the negative connotation of what can happen, which is maybe, like, hopefully feeling not the thing, like, that they're dumb, but then maybe feeling like, well, what is this? And then taking on, you know, like, even using the word disability, like, what does that mean if I think of it as a disability? And, well, and unfortunately, I think, sort of historically in society, the term dyslexic was not, does not necessarily have positive connotations, right?

So, so taking that on as saying, like, I have been diagnosed with dyslexia. And so now our children are, have to, or are sort of faced with how to, how to deal with that. And so with, obviously, there's the benefits of, of sort of realizing what is causing the problems with, with reading and so on. And there can be a relief for people, but then, but then you're faced with, like, oh, now I have this, this thing that isn't, it isn't going to go away, right?

And, you know, now, now I have to learn to live with this. And so that really gets into the identity aspects of this whole discussion. Right. And I wanted to just bring up the, the concept, the psychology concept of stereotype threat. And I'm going to read you the definition, but I'll talk about a little more what it is, too, especially for a dyslexic person. So stereotype threat is the performance-diminishing apprehension of fulfilling an applicable negative ability-related stereotype in the face of a challenging or frustrating task.

So basically, I think it might help to actually talk about the kinds of studies they do for this to understand what that means. So, for example, they've done it with lots of different people, women in the sciences, racial minorities. And the idea is that if the person taking, let's say, a hard test is, is made to be aware of, of a stereotype about part of their identity, you know, race or women in sciences or something like that, then it affects their performance on the test.

And that's probably the simplest way of putting it, although it's much more complicated than that, really. And so they've started studying this. I don't think there's a lot of conclusive evidence yet because there's a lot of interacting factors. But they've started studying this for dyslexic students because they're expecting that that will also be true. You know, it's interesting because even in how they do the study, like sometimes what they'll do is just say the study is looking at this or this, like the study is looking at verbal skill, for example, they might say.

Or they might say the study is actually looking at how you reason a problem or something. So then it doesn't feel as verbal, for example, and that'll affect the performance on the test, because in one case, the stereotype of dyslexics not being as good at, let's say, language arts might get evoked versus not. So it's just something to keep in mind, I think. You know, this is a very specific kind of thing that they look at, you know, in academics especially.

But I think it points to that idea that then it's like we can be conscious of something that we're labeled as and then it can affect something like our performance. Yeah, kind of. Like we're almost like living up to an expectation that's a little bit different than that, actually. It's not, stereotype threat isn't exactly the same as that. No, but it's a similar concept. And so it's sort of in its simplest form, and the idea is people who are diagnosed with dyslexia, once they sort of then take on that identity as being dyslexic, and they know that, oh, people with dyslexia are not good at reading.

Like that's the sort of, that's what's commonly thought, right, or not good at writing. And then when faced with a task that is explicitly reading or writing, they might, rather than sort of rely, you know, fall back on their own strengths, they're going to remember, like, oh, I'm not supposed to be good at this, right? And so it's easy to see how that could negatively affect our kids. Well, in just a couple of specific ways, it's usually either by disengaging, so not trying as hard on the test, or actually sometimes, like, spending a lot longer on a problem, which can sometimes, you know, go well or not go well.

So those are some of the ways they've started to look at that in terms of how it actually plays out. But the point, overall point, being that it affects someone psychologically. So that's sort of like talking about diagnosis, some of the pros, but maybe some cons also with, like, potential labeling or starting to feel like stereotypes apply to a person. I think, though, that there's also, like, a way in which a dyslexic person can start to see much broader, in a much broader way, their identity, too.

So in that case, you know, maybe you might think of things like neurodiversity and the idea that they just interact with the world and learning in a different way. Yeah, that's been really helpful, I think, in the way that our daughter has embraced this identity and that we've discussed it with her is emphasizing sort of worldwide neurodiversity. And so, you know, she, her brain is different from people who don't have dyslexia, but it's different in ways that make some things harder, but that also make some things easier.

For example, she has really strong visual spatial skills. And so we've really emphasized with her that not just the label of dyslexia, but the fact that she is a visual spatial learner. And so she's really embraced that as part of this whole identity. Right. So it's a, there's almost an aspect where the identity can be explored even in that way. And then I think also it starts to bring up, you know, ideas where you start to see that it's really like how an individual is interacting with their society, which starts to get more into advocacy and that kind of thing.

And I think that in that case, like students also are, you know, there can be a positive to that, right? I mean, there's a challenge to it because that's, that's really difficult to feel like someone's atypical, like, and then there's a typical way things are run and that that has struggles associated with it can be very difficult and challenging. On the other hand, it can, it can lead maybe to some early, like, I feel like our daughter, especially, like she pretty early became quite assertive about accommodations and that's like helped her overall assertiveness.

And so there can be some positives in terms of resilient, things like resilience and assertiveness and all that kind of thing as well. Yeah, and I think it's really can be helpful for society at large to have people who have different learning styles and different strengths and weaknesses to be advocating for accommodations and things like that. Because I think that the traditional school system really only works well for a small fraction of children, actually.

And so having a much more individualized approach to education with accommodations for people, I think is going to be better for everyone in the long run. So I guess what, as parents, like, how can we approach this? Because, you know, we've said all these positive things, we've said a lot of challenging things, like, so how can we approach that? I think one thing that's important is to, you know, besides, well, I guess, no, I'll say that first.

First, I think it is important to try to help our kids understand lots of these different nuances or, like, you know, like if they didn't even know that dyslexia has strengths, that's important for them to know. But it's also important to meet them where they're at and accept that. Like, we can't force them to be cheerful about it if they're at a stage where they're feeling labeled and unhappy about it. I mean, we can't.

Right. You can't force someone to embrace an identity. I mean, if they are saying, I don't want to be dyslexic, like, listen to them, listen to what they're saying. They're obviously dealing with a lot of feelings and emotions around that. Yeah. And so, I mean, I guess maybe it just really comes back to the fact that it's a journey, right? We picked the name Dyslexia Journey, you know, for a reason, I think, which is that a lot of these aspects, even the identity aspect, is a journey.

And it's probably a continuing forever kind of journey. And so, it's important, I think, to think of it as a process and exploration and then mainly just meeting our kid, like, right where they're at with it and trying to be a support for them. Right. So, let us know what you think about this concept of identity with regards to dyslexia. We'd love to know how you've handled it with your kids, how your kids have embraced it or not embraced it.

Just let us know your thoughts. Thanks, everyone. Thanks, everyone.