This changed my mind on what’s possible with a learning disability

Rae has a lifelong misconception about her dyscalculia turned on its head. And she learns why labels don’t mean limits.

• Listen: Kids are at a breaking point, and school policies might be to blame 

• Listen: The uncertain future of special education in the United States 

• The discrepancy model: What you need to know

Jen Spindler: And that is what's so strange about this relationship between ability and aptitude, and how do we, you know, take a kid who comes in and say, "Okay, well, you're not good at math, but you're good at reading."

Rae Jacobson: When does the label help, and when does it hurt? It's something I've been thinking about a lot. As a kid, I was diagnosed with dyscalculia — or I guess some people say dyscalculia. This means that math and directions and spatial reasoning are all really hard for me.

And when you're diagnosed with a specific learning disability, there's a phrase they use: a discrepancy between ability and aptitude. It was one of those things that you hear and it just stays with you. Because the way I understood it then, and the way I've understood it my entire life, was pretty simple. A discrepancy between what I should be able to do — math — and what I could actually do — no math.

It colored how I saw myself and what I thought I was capable of. In high school, it was at the top of my mind when I got my SAT scores back: 800 on my verbal, which is really good, and 300 on my math, which you have to, like, misspell your own name to get. Or you have to do what I did, which was make a butterfly pattern in the test bubbles because I figured it would shake out to basically the same thing.

It's always been that way. Some things come so easily and others not at all. The way I and many of my teachers understood this discrepancy was that it was a kind of prophecy fulfilled. I should be able to do this, but I can't, so I won't. I've talked to a lot of people who are diagnosed with specific learning disabilities like dyscalculia or dyslexia and more, and this is something a lot of us have experienced.

These labels come with this sense of limitation — a feeling that there are some things we just can't learn. And it's tough, too, because they've also been really helpful — unlocking support and accommodations and giving us language to explain our brains. So lately, I've been reexamining what these labels really mean, what they say about what we can or can't do. And the more I think about it, the less sense it makes.

So I reached out to today's guest, Jen Spindler. Jen is a former special education teacher turned researcher. She studied inclusive education at Cambridge University — the one in the UK — and I knew she'd be able to offer perspective. What I didn't expect was that she'd change how I've been thinking about what's possible for brains like mine my entire life. I'm Rae Jacobson, and today on "Hyperfocus", Jen Spindler changes my mind.

When I think of ability and aptitude, I do think of it as this discrepancy between what you should be able to do and what you are able to do. And that's how they know if you have a learning disability, was in my mind. Like, oh, okay, well, you should be able to do math, but you can't do math. So that must mean you have a deficit in math and thus that's how we define whether or not you have an LD.

Jen: When we talk about aptitude, we're typically talking about an innate ability, right? A natural readiness that someone is born with, and there's a typical consensus that this is constant because it's something that is coming naturally to a person.

Abilities are acquired. And because of that, it's actually very malleable to change. And this is really important because aptitude and ability are connected. Aptitude is kind of — think of it as — the spark that a person has within them — as like an ember or a flame — and then when we want to grow it, right, we would need to feed that spark.

Ability is very informed by a person's experiences. And a person who has a lot of confidence, who, you know, feels good about themselves, they're going to develop their abilities very quickly, right? Because their internalized voice is saying, "Hey, I can do this."

If we think about children or young people who have learning disabilities and they're having experiences in which the world isn't built for them, right then and there, they're not engaging. And therefore, their abilities are actually developing more slowly.

05:51 Intelligence is flexible and connected to a person's experiences, confidence, and environmental support.

Rae: So it turns out I've been thinking about this all wrong for decades. It's not the be-all and end-all measure of what you should be able to do versus what you're actually able to do. Aptitude is your innate ability, like the things that come naturally to you. Someone has an aptitude for watercolor painting or basketball or whatever.

It's pretty static, but it isn't what I thought — the thing that defines whether you'll ever be able to do something at all. Because ability, what you're able to do, is not static. It changes, and it's impacted by a ton of different stuff, like how you see yourself, the kind of support you have access to, the environment in which you're trying to learn.

So it turns out that discrepancy I was so hung up on isn't a prophecy. It's a possibility.

Jen: And that is what's so strange about this relationship between ability and aptitude, and how do we take a kid who comes in and say, "Okay, well, you're not good at math, but you're good at reading." What are the even other factors that aren't in that equation that we may not be assessing a kid at all, but they're really good at? That they won't be able to build that muscle or skill because we haven't even decided that it's important in schools.

Rae: That completely changes how I read that phrase. So aptitude, you're saying, you measure someone's aptitude — like a WISC, an intelligence test — and you say, "They should be able to go to math." Ah, but look, they're not good at math.

But there's a weird thing, that that would mean that if you get an intelligence test at age five, that your score would remain the same when you're 15. And that's what we thought was true. But we actually realized that that's very flexible and is connected to the experiences you have.

And so what is true intelligence at its core can be questionable. And that's — but either way, if we were to separate it, I would think aptitude's what you're born with and your innate abilities, and ability is the performance and how it acts itself out in the world.

Rae: Okay, let me make sure I'm getting this right now because this really changes how I've looked at this for literally all of my life. So I'm truly sifting through this, but it's not about: this is what you should be able to do, this is what you can do, so here's the problem and that's what now we give you this diagnosis based on this difference.

It's: this is what you're coming in with, and for a long time we thought that was fixed. Is that right? Like, this is what you're able to do, this is who you are, this is where you are, and it's not going to change. But what you're saying is it's not that at all. It's super flexible and that people can change over time. And so maybe that definition not only doesn't mean what I think it means, but doesn't really work anymore.

Jen: Well, if you were to talk to a neuropsychologist, they will tell you that intelligence is basically fixed. Their entire life's work is based on that. It's the idea that you can give a test and mark a kid on a standard deviation score and say, "This kid should be performing well in math because they are so brilliant, but they aren't."

But as the research has shown, it's a little more complex than that, because all of the experiences that we have build over time. And what would have been an aptitude or something we're naturally ready with, if you never see a piano, you'll never know if you're good at piano. And that's the part that is a deficit that kind of builds for kids.

11:58 IEPs and self-advocacy for success

Rae: I take some comfort that in my understanding of ability and aptitude as fixed and immutable issues, I was in the company of a bunch of fancy neuropsychologists. But I take a lot more comfort in the fact that we were pretty much all wrong.

There are so many factors at play that it's impossible to just say this is just how you are, which to me has always kind of felt like the psychological version of "it is what it is." Like Jen says, if you never see a piano, you'll never have any idea what you would have done if you had the chance to get behind a keyboard.

It's similar with learning anything else. If you aren't taught math in a way that makes sense to you or in an environment where you are able to learn, you'll never know if math makes sense to you. Jen explained that this is where inclusive learning comes in and why it's so important. Because though some parts of a learning disability are fixed, what if — what if — there was a way to teach reading or math that worked for all kinds of brains? What would that world look like?

But the reality of trying to teach a diverse spectrum of learners is incredibly complicated. So this is where IEPs, or Individualized Education Programs, come in. These plans, which are designed to help kids access the support they need to learn, are pretty common these days, but that was not always the case. IEPs came to be in 1975 at the passage of the Individuals with Disabilities Education Act, which you probably know as IDEA.

Jen: This was really profound because it was the government saying, "Hey, at a federal level, we're going to dedicate resources to a kid's individualized education plan to ensure that children with disabilities can actually access education."

And that's really powerful because without that resourcing and dedication in the past, kids — it wasn't an assumption they would go to school. If you had a problem with learning, you would drop out by eighth grade. A lot of kids who were nonverbal or speech and language issues were institutionalized. It was a civil rights issue at this point.

But I think this is important. We are now at the crux of the debate of inclusion. Without the label and that identification, how are we supposed to know what a kid needs? There needs to be some sort of metric or understanding of a kid's learning in that moment, which we would say is their abilities, right, to then say, "Okay, that kid needs counseling twice a week. Oh, this child needs a small reading group." That can't be determined without understanding and labeling a child.

Rae: So it's two-sided. As you're saying, there's a coin, you flip it, there's labeling and all of the benefits that come with that.

Jen: Yes.

Rae: And then there's the other side of the coin, which you also touched on, which is a sense of limitation that can come from being labeled.

Jen: Absolutely, yeah. We know this is true from research studies. The idea of self-concept, which is an individual's belief in their abilities, it is what we call a protective factor. For kids with learning disabilities very specifically, a protective factor means that the higher a person's self-concept — that internalized voice, "I can do this" — the more likely that they're going to find success in school, right?

That can look like — you know, high — it's hard if you have dyslexia to read. You said dyscalculia. It's hard to do math, but you might still stick with it because you have an internalized voice that says, "Hey, you know what? I can do this."

And the part that has been a struggle for special education for years is to both give the identification and then to also empower kids to say, "Oh no, no, this isn't a bad thing. You just need help in school."

Rae: When you talk about how that stuff carries down through the years, you know, like I'm sitting here talking to you about it now, I can remember the feeling from when I was a child. I know that this is endemic throughout our community.

And we hear about this over and over, like, oh, this is who I was in school. And you have a lot of people walking around who never had the benefit of this thinking — this thinking that's still evolving — that is not at all like a fixed thing. And I feel like it's a piece of the conversation we don't get to have around inclusion, which is that you have people who carry, like, all of the stories they've been told about themselves and whether those stories benefited them in some ways or didn't.

It's kind of in flux. We don't really have a great way to manage that in adulthood.

Jen: So much of what makes us an adult is a result of our experiences when we were children. And you know, those memories are so powerful that one of the reasons we can remember being seven so vividly in comparison to what you ate for breakfast yesterday is because, developmentally, we are so elastic and absorbing everything.

And as we get older, developmentally, around age 21, 22, the frontal lobe starts to harden, we start becoming more logical and less emotional. But that foundation is what makes childhood so critical, magical, and at the same time, so much potential.

Rae: As Jen talked about the importance of self-concept, I started thinking about the other labels people with disabilities often rack up — the ones that are less official and more insidious, the ones we sometimes give ourselves without even realizing: bad at math, failure, struggling, difficult, dumb.

Because a diagnosis is just a diagnosis — a tool we use to define a need and, in this post-IDEA world anyway, to unlock the support that we need to feed our aptitudes and grow our abilities. What if we could find a way to use labels that help us and drop the ones that don't, to ask for what we need and know we deserve it? What might we be capable of then? Jen told me a story that kind of felt like a glimpse into that world.

Jen: Where my first two weeks teaching, I had taken points off for spelling for a kid. I'll never forget, and this girl came up to me — this is the second week of school — and she said, "Ms. Spindler, I have dyslexia. You cannot take off points for spelling on this test. It says it on my IEP."

Rae: Wow.

Jen: This would be the dream of an IEP, right?

Rae: I want to meet that kid. That's awesome.

Jen: But that would mean we would then have to reckon with the fact that it's not just academic that we are promoting and trying to nourish and build. We are also — you know, this self-advocacy piece. Because the world will always see you differently in some way, and you need to speak to it and say what are your rights and what you deserve. That is also very important. And that's the piece that I think that has been missed quite often.

Rae: Yeah. There's a way to view people by their deficits and there's a way to view people by who they are as a holistic person.

Jen: That's right, yeah.

Rae: It sounds like what you're telling me now is that like all of this stuff, all of this educational policymaking and changes and the things that kids go through individually and the teachers, they all come together to create the experience that somebody has as they move through the school.

Jen: 100%.

Rae: None of this exists in a vacuum.

Jen: No.

Rae: And the goal, right, is to have a person who hits adulthood and feels like they could be like that girl and be like, "I can advocate for myself. My difference is part of who I am and, you know what? If you don't like it, get on board or jump off. I don't care."

Like, you have a person who understands themselves, their brain, their ability, what they want from life — all of those things work in concert with each other. You don't have somebody who's like, "Well, I'm broken. So here's what I can't do and here's what I've been told that I can do, so I guess I'll just do that." That's the bad outcome.

Jen: Yeah, and the problem is that often we have very low expectations for kids with disabilities. And so they internalize the voice that their adults have. And so when we look at the holistic child, one of the reasons that, you know, you want to think about their whole self and not that little piece that you're getting in that moment is because that little piece can either define who they are.

And if they aren't experiencing success — like a kid who's bad at math — then that's all that they'll feel. But if you then really seek to engage and meet a child where they are and approach — this is something that's actually called — there is a name for it — by inclusionists, in which we need to radically think about, to really revolutionize education.

We would have to approach the situation where the teacher's learning just as much as the kid, right? In which you are allowing the kid to put themselves a little into whatever it is that your belief system are and change a little. Then that is where we can now actually grow.

And a part of that is not thinking of education as an end state. It's this malleable growth mindset that we can see children as little plants that are growing, that we actually have an ability to add different types of fertilizer, water. Actually, this was a quote from one of the educators of where I did my research in Cambridge, was this metaphor of kids are like plants. And it's that nurture and care that where we allow for an uncertainty so a kid can then present themselves to you and you're not putting so much of yourself and what your belief system are on them — that it's a two-way street. That we really will then be able to transform what we hope to do with special education, but has been in some ways, you know, negative.

Rae: So this is a genuine question. You have so much knowledge about all of this stuff. You've worked as a teacher, you've worked in research. This is like your world, this is your planet, this is your snow globe. And I'm so curious about like: what would a good world look like to you? What is your ideal world for all of this? If inclusivity, if that revolution could come, what is it like?

Jen: Well, firstly, I would say one of the reasons I was so encouraged by this inclusion idea of — well, what is full inclusion? What is the ecosystem of the environment that's supporting a kid? Is because I really think it would require for whole schools to remember that every adult there is an educator.

We have such a very box-like idea of what's an educator, but the secretary that greets you at the door, that's an educator. The safety person, that is an educator and is interacting with the child that then holds something in that kid and imparts education on them.

And so part of what we have to do is realize that school systems in and of itself are really important and knowing, does everyone believe that that kid can do this? Does everyone see the strengths within that one child who's constantly running in the hallways, who's, you know, maybe having a little more difficulty in getting their letters straight?

And I think we tend to gloss over and think of scale and go for the academics. And we've actually seen a lot of good changes in the academics over years. We know that kids who are identified earlier, you know, they — you can actually close gaps for reading.

But what does that look like if we know that and we actually acknowledge that a part of education is nurturing and taking a whole child and making them into a human being that becomes an adult? And that would mean thinking about schools as mini ecosystems and environments that can disable a child or enable them.

Rae: A huge thank you to Jen for coming on and genuinely changing how I see my own brain, and a massive shout-out to Julie Subrin for all her amazing work on this episode. And a listener question: we are working on an episode about dealing with sensory issues as an adult, and we want to hear from you.

If you have ADHD, how does sensory stuff show up in your life? Are you wearing your socks inside out right now? We want to know about it. Email us at hyperfocus@understood.org. Thanks so much and see you soon.

"Hyperfocus" is made by me, Rae Jacobson, and Cody Nelson. Calvin Knie is our video producer and video is edited by Alyssa Shea. Additional editing by Julie Subrin. Our research correspondent is Dr. KJ Winn. Briana Berry is our production director and Neil Drumming is our editorial director.

If you have any questions for us or ideas for future episodes, write me an email or send a voice memo to hyperfocus@understood.org. This show is brought to you by Understood.org. Our executive directors are Laura Key, Scott Cocchiere, and Jordan Davidson.

Understood.org is a nonprofit dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. If you want to help us continue this work, you can donate at understood.org/give.