The Huge, Hidden Cost of Being Neurodivergent

Hello, my friends. The huge, hidden cost of being neurodivergent has tremendous, real-time impact on many neurodivergent adults, but today I'm going to ask you to step back in time and think about your early life to really clarify ~ for you ~ what led up to what I covered in Episode 1: missed diagnoses, wrong diagnoses, or misunderstanding yourself as depressed, anxious, obsessive, oppositional, irresponsible, unstable, uptight, lazy, dumb, weird – whatever it is for you, I'm talking about characteristics that were assigned to you, and that you may have come to see as part of who you are, that imply YOU are the reason you're unhappy. Today, I'll tell you how it happened so you can let go of that bullshit and walk or march or dance or storm right into the rest of your life celebrating who you are, not apologizing.

Because you are not the reason you're unhappy. And if you're not unhappy, but you're struggling in other ways, let me be clear: You are not the reason you're exhausted. You are not the reason you're frustrated. You're not the reason you're anxious, or a perfectionist, or "wound too tight." You're not the reason you're forgetful, have your head in the clouds, or struggle to do the most important thing first. You're not the reason your thoughts or emotions feel out of control sometimes ~ or all the time.

And not only are you not the reason for your problems, but a lot of them aren't even problems. Many of the criticisms we — and maybe other people — use to describe the things we need to fix about ourselves actually describe our reactions to trying to meet the expectations of circumstances and relationships that don't fit us.

In and of itself, not meeting expectations and situations that don't fit us should be a neutral experience — the same way you might grab a Phillips head screwdriver, then realize the screw you need to tighten requires a flathead. In that case, you wouldn't be mad at the screwdriver or the screw, and you wouldn't throw the screwdriver away or leave the screw loose. You'd find the right screwdriver — or in my case, try your fingernail, then a butter knife, then go find the right screwdriver — or you'd switch the screw, and that would be that.

But we are generally taught to see situations that don't fit us as evidence that we are flawed in some way, and for the most part, we're encouraged to adapt ourselves to the situation, not to expect, request, or create changes in the situations to fit us better.

Let me give you one more example in case you're stuck deciding if you're the screw or the screwdriver in the previous analogy. If you ran a mile in shoes that were way too small, and afterward your feet were blistered and even bloody, you wouldn't think there was something terribly, intrinsically wrong with your feet, right? It was the damn shoes! And if you're thinking, "Yeah, but there must be something wrong with me if I ran a mile in shoes that were tearing up my feet," hold that thought.

For now, let's back up a little and start with how we got here. First, a quick reminder that when I use the words neurodivergent or neurodivergence, I’m referring to significant variation in a person's brain functioning relative to that of the general population. This variation is present from birth and because development is more closely monitored in childhood than during other periods of our lives, differences are usually noticed then, but can easily be, and often are, missed or misattributed. Even though neurodivergence is a natural state that should be met with understanding, acceptance, and support, neurodivergent children's differences are often corrected and even disciplined.

For that reason, there's a very common sequence of experiences that takes nearly all neurodivergent children from being our authentic selves to getting subtle and not so subtle messages that aspects of our authentic selves are not acceptable, wanted, or valued, to trying to change ourselves, to failing to change ourselves, to becoming adults who are pretty sure that we would be happy, or successful, or at least fine, if we could just get our shit together in one way or another.

As you heard me give that overview, it may have resonated with you right away. Examples from your own life may have popped into your mind without you having to reflect on your past at all. But for a lot of us, the connection between memories of our early lives and how we understand ourselves now isn't very clear.

Part of that is because our individual experiences can vary so much. Some of us will have received those negative messages about a single aspect of our authentic selves or something that only impacted a minor area of our lives. While others of us will have felt that everything we said or did was met with correction or criticism by essentially everyone, everywhere. And most of us fall somewhere in between those extremes.

But what makes an even bigger difference in whether or not you're aware of that sequence of experiences that took you from being yourself to being pretty sure you're the problem is the extent to which you've internalized those negative messages that came in between.

In other words, if your brain has stored memories of those occurrences as things that happened to you, as external experiences, you're more likely to remember them the way I described that sequence: you're being you, you get negative feedback, you try to change, and so on.

That's not to say that those experiences are not still impactful, because they are. But over time, you're likely to develop an understanding of why certain situations and relationships are not good fits for you, and there's incredible value in knowing that it's no more the screw's fault than it is the screwdriver's fault when they're incompatible: they just don't fit.

In contrast, if your brain stored those memories as things that happened because of you, as events that occurred just because you were involved, the source is internal, so you're probably less aware of that very common sequence of experiences for neurodivergent children, and more convinced that everything that's hard in your life is simply your fault.

If you think about other types of differences that can be evident in childhood, that sequence is far less common. A child who has a severe allergy to bee stings, for example, might get negative messages about it. There might be harsh comments about the cost of EpiPens or the inconvenience of having to provide one to the school, or they may get yelled at for not noticing bees in the grass they're playing in. And that can be hard, but they aren't inundated with implications that they should correct themselves to somehow not be allergic, or flooded with praise if they become really good at faking that they're not allergic.

What about children who are much taller than average? They may be teased or assumed to be older than they are by strangers, who might expect them to behave differently, or they may never hear the end of how much it costs their parents to replace the shoes and clothes they outgrow so fast. And none of that should happen to them, but still, no one actually blames the child for growing.

The most important distinction between those examples and the sequence of experiences that is common for neurodivergent children is the outcome, which is that neurodivergent people come to believe that the only way to address our difficulties is to change ourselves.

This is what I call The Huge, Hidden Cost of Being Neurodivergent, because for most of us, it's far more impactful than the actual differences in the ways our brains function, which we know because there are some situations in which the ways our brains function cause absolutely no problems at all.

Let's take a deeper look at how this hidden cost starts adding up in our early lives. It often begins in our families, but not always. Many of us were raised by a parent or parents who are also neurodivergent, though they may not know they are or identify with being neurodivergent. Still, neurodivergent parents may see themselves ~ not significant differences ~ in their neurodivergent children, who then might receive fewer or less intense messages of criticism, correction, or rejection when they're being their authentic selves.

That can also be the case for neurodivergent kids who have a parent or parents who are very attuned to them. Parents like this anticipate and meet their neurodivergent child's needs often before the child is even aware of them. Examples of this are a parent providing a lot of opportunities for physical activity for a child who needs that, or a parent removing a child from an overstimulating environment before it becomes a problem, or a parent encouraging a child who has difficulty explaining big emotions with words to use art to express themselves.

Those types of parental actions can normalize and validate a neurodivergent child's differences, but even parents who are themselves neurodivergent or are naturally attuned have usually been socialized ~ as people and as parents ~ to expect some amount of compliance from children, so there's typically some correction of a neurodivergent child's instincts. It's important to note that children accrue the hidden cost of being neurodivergent even when messages of correction are given as loving guidance.

And I don't say that to place unnecessary blame on parents or anyone else, but to help you understand how you got here. I often hear neurodivergent adults deny themselves any acknowledgement of being impacted by the actions of people they love. They'll say things like, "I can see why my parents treated me the way they did because I was a handful," or, "My grandmother always made me feel really bad about myself, but I don't like to talk about that because I had it so much better than a lot of other people."

One of the trickiest things to accept about life is that two things that seem to oppose each other can be true at the same time. So, you can know your big brother loved you and that the way he would complain about how long it took you to do your chores is the voice you still hear in the back of your head as your blood pressure spikes whenever you try to do anything within a time limit. We can be overwhelmed with gratitude for our families and wish they'd known more about how their actions would impact us.

Can you think of examples from your own life of messages you received in genuinely loving and supportive ways that also forced you to shut some part of yourself down or made you feel like an outsider no one could possibly understand? Maybe you loved to just sit in the den with your grandpa during family gatherings, but your mom would always say, "Come on now. Go play with your cousins. You're hurting their feelings ignoring them like this."

Or you used every ounce of self-control to manage your energy in school because you absolutely loved your teacher, so sitting at the kitchen table doing your homework was like torture, and your dad would say, "See how your sister does her homework fast so she can go play? Just do it like that. You don't want Mrs. Smith to think you don't care about what she's trying to teach you."

On the flip side of those experiences are parents who perceive their neurodivergent children to be completely different from themselves, who aren't at all attuned, or who have rigid models or ideas about parenting that prioritize getting obedience from children through authority or force, if necessary. Rigid parenting is difficult for kids regardless of where they are in the range of neurodiversity, but overall, neurodivergent kids with those kinds of parents fare worse, because they're more likely to have difficulty fitting in other settings as well, so the hidden costs are cumulative.

And lastly in terms of families are the messages we get from siblings and other family members, as I've already mentioned in a couple examples. Extended family members will subconsciously compare a neurodivergent child they don't see often to a mental prototype of a child that age, which usually makes the neurodivergent child's differences very apparent and, somehow, opened a commentary. Whereas a parent may have no problem with their neurodivergent child wearing earbuds at a loud, crowded restaurant, Uncle Steve may have no reservations about telling the child they're being rude.

Or Grandma, who hasn't seen the family in five years, may deliver an unsolicited speech about how she was an aide in a special education classroom 35 years ago, so she knows what autism looks like, and So-and-so, the actually autistic child, is just faking it. Uncle Steve and Grandma might feel better for getting those things off their chest while the hidden costs to those children are growing.

Sibling dynamics are complicated to begin with, and can be hugely impacted by one child getting a higher level of support or attention from parents or other family members. Of course, neurodivergent children aren't responsible for parents being more focused on their needs than their sibling's, but siblings who feel neglected or ignored can rarely see that, and that's not their responsibility either, so some of them can be pretty mean when they're taking their frustrations out on the person who seems responsible.

Neurodivergent siblings can also be in the role of the "perfect" or "easiest" child if they've already mastered the skill of avoiding criticism at all costs. This can cause neurotypical siblings to be perceived as "problem" children, when in fact they're just making and learning from typical, age-appropriate mistakes. Even though the perfection everyone praises comes at considerable cost to the neurodivergent child who is terrified of making mistakes, sibling relationships are complicated just as much by having a sibling who sets the bar impossibly high as by having a sibling who gets all of mom's attention or always gets to pick the restaurant because they only eat five things.

All of that being said, the hidden cost of being neurodivergent really starts racking up when kids go to school. There are more reasons for this than I could ever cover in a single episode, so I've condensed them to an overarching principle, which is this: Generally speaking, most educational systems have one definition of success in each area. This includes academic tasks, but also communication, social skills, behavior, and how emotions are expressed.

Think back to your own childhood. For the most part, teachers taught one "right" way to print each letter of the alphabet, to do addition, to ask for something, to play with peers, to eat your lunch, and on and on. Then, they measured how well you could do each thing the one "right" way. Right?

And this is not in any way a castigation of teachers, many of whom go out of their way to accommodate children's differences, but as a system overall, especially in the U.S., there aren't enough resources to allow children to learn differently, or even be significantly different, or to assess their learning, communication, social skills, behavior, and emotional expression in more broad or dynamic ways.

So most of us were taught the one right way to do each thing, then given a number or letter grade to describe how well we could do each thing the one right way, even if we could do it better another way. That means that if you were a child who could tell anyone, in articulate detail, about the Revolutionary War, the lifecycle of a butterfly, or Louis Armstrong's music, the grade you would've received for a written report on the subject wouldn't reflect your knowledge, or your use of language to express that knowledge, if you had messy handwriting, spelled poorly, couldn't sit still long enough to finish a written report, or exceeded the page limit because you knew more about the topic than you could fit in a few pages, and all of it seemed equally important to you.

On top of that, school also meant being surrounded by a large group of peers who were all measuring themselves, and each other, and you, against these one-size-fits-all standards. And here's the rub: Most of your peers ~ an estimated 7 or 8 out of 10 ~ could learn all of the things the way they were taught, could demonstrate their learning in ways teachers could measure accurately, and did those things naturally, without suppressing their instincts and natural ways of processing, and without having to separate who they are from who everyone wants them to be.

But the neurodivergent kids ~ an estimated 2 or 3 out of every 10 ~ couldn't learn all of the things, or couldn't learn them the one way each of the things was taught, or couldn't demonstrate that they knew the things in the ways the teacher or their peers or their parents were measuring them, or they could do all of those things, but only by putting a false version of themselves forward while shrinking or pushing down their authentic selves.

Can you imagine if we had a way to quantify the hidden cost of that? Especially when you consider that it applies not just to academic performance, but to having teachers' approval, encouragement, and support, how we were treated by peers, and whether or not we had real friends ~ people who knew and accepted our true selves.

Even if a young person has a neurodivergence diagnosis, and knows that they do, and knows something about what it means, most neurodivergent people at any age do not have a full understanding of the ways neurodevelopmental differences impact all areas of our lives. So instead of understanding and accepting the ways we're different from others — like you would if you were taller than your classmates, or had to carry an EpiPen because of a life-threatening allergy to bee stings — as neurodivergent kids, we saw our neurodevelopmental differences as flaws or failings, things we needed to work on, things we needed to change, things that were wrong with us.

What we didn't know is that we were comparing ourselves to standards that didn't fit us. Of course we were, because everyone else was comparing us to those standards, too. Do you remember that? Do you remember people telling you to be quieter, more social, more focused, less emotional, less active, more responsible, less lazy? If you thought about it, could you estimate the cost of those comments, whether they were made lovingly or critically?

And those are relatively mild ways to tell us that we weren't meeting one-size-fits-all standards. Many of us received messages that were much more cruel, even though nothing we did or could have done would've made those standards fit us. What the hell is the cost of that?

The crazy thing is that no matter the phase of our lives, neurodivergent people — like all people — want to do well, to be liked, to be praised and rewarded and valued, to succeed, so when we fail to meet expectations and it's implied or said that we didn't try hard enough or that we don't care, nothing could be further from the truth. The fact of the matter is, when it comes to academic performance, social interaction, career, or really any area of life, it's far more likely that the people who do well with ease “didn't try” or “don't care,” because they didn't need to. A lot of the time, we tried harder and cared more than everyone else combined, and still fell short ~ even if just of our own expectations.

The hidden cost of being neurodivergent really comes from the discrepancy between, on the one hand, our intentions, our effort, and what we hope will happen as a result, and, on the other hand, the actual outcome or how the outcome evaluated. That discrepancy causes an incredible amount of internal strain.

We're on edge. We're overwhelmed. We push ourselves too hard. We prioritize the wrong things. We over-prepare and become perfectionists to try to avoid the pain of criticism and failure. We're "control freaks." We're exhausted, and hopeless. We lash out. Or we check out. We distract ourselves with things that make us feel good. We aim lower. And maybe, eventually, we actually do stop trying, because then we can't fail.

That is the huge, hidden cost of being neurodivergent. Which brings me back to the thought you had after you ran a mile in shoes that were way too tight, and didn't think something was terribly, intrinsically wrong with your feet when you saw they were blistered and even bloody, because you knew it was the damn shoes!

But you did think, "There must be something wrong with me if I ran a mile in shoes that were tearing up my feet." That you had that thought tells me two things that must be true about you running a mile in shoes that are way too tight: One, you'd never do that. And two, if you did, there'd be a hell of a good reason, like that your partner or child was injured and you had to run a mile through a forest to get help, and didn't even realize you threw on your partner's shoes before you began the sprint.

Everything I talked about today, everything you've been through that has cost you so much, is no different than running a mile in shoes that are tearing up your feet. When you were a child, there was a hell of a good reason you squished yourself into expectations that didn't fit you, which was that you didn't know you didn't have to — just like you didn't know you'd squished your feet into the way too tight shoes. But now you know you don't have to, which brings us back to the other of the two things that must be true, you: that if you didn't have a hell of a good reason, you'd never run a mile in shoes that were tearing up your feet, because you'd know you could just stop running or you could take the shoes off, and run if you want.

So I want to ask you, now that you know, how are you going to stop running to change yourself to meet unmeetable, one-size-fits-all standards, while the cost to you continues to accumulate? And if you are still squishing yourself into circumstances and relationships that don't fit you, when are you going to take those off of yourself, and run if you want, or walk or march or dance or storm right into the rest of your life celebrating who you are, not apologizing?

Until next time, remember: You don't have to change yourself to deserve happiness or success, because being who you are isn't the problem: it's the solution. I am rooting for you ~ exactly as you are. I'll see you soon.