Episode 1: How the Hell Could This Happen?
This is the first regular blog post and I'm jumping right into the question I've gotten in one form or another from nearly every neurodivergent adult I've encountered professionally, "How the hell could this happen?" That could be about a lot of things, but what they're asking is one of these three things, or sometimes a combination of them:
One: "How the hell could I just now be discovering I'm neurodivergent at my age?" Two: "How the hell could so many professionals have told me my problem was depression, anxiety, or some other diagnosis, when it was related to my neurodivergence all along?" Or three: "I have a diagnosis, so how the hell could I have gotten to my age without knowing all the ways being neurodivergent really impacts people's lives?"
The TLDR [Too Long Don’t Read] answer is: Diagnoses are missed, diagnoses are wrong, and diagnoses are not enough. If that's all you need to know, I'll see you next week! But if you have any of those three questions about your own experiences, stick around. We can't go back in time and change the way you, I, and many other neurodivergent adults fell through the cracks, but it's easier to move forward when we have some clarity about how the hell this happened.
Let's start with the first question: "How the hell could I just now be discovering I'm neurodivergent at my age?" Here's the short answer: Most of us got missed. Here's a longer answer so you can put your experience in context: The more we learn about neurodivergence, the more evidence we have that neurodevelopmental differences have genetic bases, meaning we're born this way.
Neurodevelopmental disorders, as they're categorized by the Diagnostic and Statistical Manual of Mental Disorders, or DSM, are present and evident in childhood, but that doesn't mean they're recognized for what they are. Obviously, everyone's experiences are different, but there are a few things we know contribute to neurodivergence diagnoses being missed in people's early lives.
First, the ways so-called "mental disorders" have been defined have changed over time. To be fair, essentially everything changes over time, especially the way we understand things. When it comes to neurodevelopmental differences, diagnoses in the U.S., Canada, and other parts of the world, are primarily guided by the DSM, which is a publication of the American Psychiatric Association.
There have been multiple versions of the DSM, and there have been advances in each, but the research and other information used to define diagnoses and the criteria that must be met for diagnoses to be assigned, has historically been based on the experiences of relatively small groups of people who were not very diverse. That is to say, there was a slant, especially early on, toward fairly privileged people with access to high-level, professional care, and whenever there's a range of how a disorder presents, the most extreme cases have typically been the ones that were noticed and studied.
As a general example, we know there have been autistic people for centuries, but autism was "discovered" as a disorder in the late '40s and classified in the first DSM as a type of childhood schizophrenia that was commonly understood to be caused by having a mother whose demeanor toward the child was not warm enough. They were called "refrigerator mothers," and if you are recoiling at that implication from a male dominated field, that mothers made their sons schizophrenic by not responding to them the right way, you're in good company.
Also, I'm sure you noticed that I said "sons," not "children." That's because autism was initially recognized almost exclusively in boys, and even the research cited in the most current version of the DSM indicates that males are at least three times more likely to be diagnosed with autism, but we'll get to that in a minute.
The point I'm making now is that the DSMs guidelines for diagnosing neurodevelopmental disorders have historically failed to capture a full range of the ways differences present in different people. This is the overarching reason diagnoses were missed in many of us early in our lives, and continue to be missed in children today. It results in kids, and also adults as many of you have experienced, being professionally evaluated but not meeting the limited diagnostic criteria in the DSM. But beyond that, other professionals who work with children also have a limited understanding of neurodivergence based directly or indirectly on the DSM. This includes pediatricians, psychotherapists, school counselors, and teachers, who are the most likely to refer a child for evaluation, but if they were taught that neurodivergence can only look certain ways, they're going to miss it, too.
Neurodevelopmental differences are often missed by parents as well, though it's important to note that this is a nested phenomenon. By that I mean, a parent whose neurodivergence was missed is more likely to miss neurodivergence in their child. I know many of you have had the experience of discovering your neurodivergence in adulthood, then becoming increasingly certain that one or both of your biological parents, or another close relative, is also neurodivergent. And you’re probably right.
Data varies considerably, but ADHD, autism, & the specific learning disorder known as dyslexia are the most common types of neurodivergence by most accounts, & each of those has been found to be around 80% heritable ~ higher in some studies.
Data varies considerably, but ADHD, autism, and the specific learning disorder known as dyslexia are the most common types of neurodivergence by most accounts, and each of those has been found to be around 80% heritable ~ higher in some studies. This also explains why many of you may have become aware of your neurodivergence through the evaluation and diagnosis of your own biological child, but prior to that process, you may not have perceived them to be atypical if their differences are similar to yours ~ which is probably why your parents didn't see you as different, which added to your diagnosis being missed.
Another reason that diagnoses are often missed in childhood has to do with co-occurrence, though there are different ways that this contributes. Many types of neurodivergence overlap, but earlier versions of the DSM didn't allow for certain diagnoses to be given together. Beyond that, whatever is observed to be the most disruptive or impairing generally takes center stage, so a very hyperactive child is likely to be diagnosed with ADHD while indications of autism or learning differences, for example, are attributed to ADHD instead of being explored separately.
On the other hand, neurodivergent people often have special skills or talents, and adults tend to be enchanted, almost blinded, by prodigious children. This can result in their neurodivergence being missed because their strengths are perceived to outweigh their challenges. For instance, exceptionally intelligent children with indications of ADHD are often overlooked because adults assume they're "smart" enough to manage their difficulties.
As I mentioned earlier, girls and other kids who are socialized as girls are less likely to be diagnosed with neurodevelopmental disorders, both historically and presently, even though there's no evidence of biological differences that makes neurodivergence more likely in males overall. It's become increasingly evident that the prevalence of neurodivergence in general is unrelated to biological sex, and that diagnoses are more often missed in girls, and later women, due to substantial gender-specific differences in the way children are socialized, which impacts the ways neurodivergence is expressed.
Even for kids who have very progressive parents, dominant cultural norms impart powerful, contrasting messages about what's expected from people socialized as girls versus those socialized as boys.
A crude summary of this very complex process that begins an infancy is that boys, overall, are encouraged to be active, outspoken, & fearless, while girls, overall, are taught to be accommodating, passive & cautious.
This socialization results in boys, in general, being uninhibited, so their differences are observable to others, and if those differences cause problems, they're likely to lead to a diagnosis and some kind of intervention. In contrast, gender-specific socialization results in girls, in general, minimizing or concealing their differences due to deeply ingrained subconscious aversion to behaving in ways that draw criticism from others. For that reason, girls' neurodivergence is much more likely to be missed by adults, peers, and even themselves, because being inauthentic disrupts normal identity development. In addition, both the expression and recognition of neurodevelopmental differences are impacted by other types of cultural influences, which can directly affect a child's behavior, but more often influences adults to attribute a child's neurodevelopmental differences to other aspects of their lives.
I'll give you a couple examples. A child who is being raised with cultural values that emphasize keeping difficulties private may not reveal academic struggles to their teacher, who might otherwise have suspected a learning disorder and referred the child for testing. Another example that's entirely too common involves children who have difficulty managing their energy levels, emotions, behavior, and focused attention, which school staff often interpret as defiance and attribute to the child lacking proper parental support, discipline, or control.
Children need those things, of course, but not having them doesn't make a person neurodivergent, just like autism isn't caused by "refrigerator mothers," but neurodivergence diagnoses are often missed when adults make these kinds of assumptions. Not surprisingly, this has the greatest impact on children of color and those from families with lower socioeconomic statuses, who are also underrepresented in the research.
Obviously there are systemic problems affecting that situation in ways that are much broader than misdiagnoses, but let's leave that alone and move on to the next question: "How the hell could so many professionals have told me my problem was depression, anxiety, or some other diagnosis, when it was related to my neurodivergence all along?" The answer is: Neurodivergent people whose diagnoses are missed for any combination of the reasons we just discussed are then likely to be misdiagnosed.
But wrong diagnoses are not a coincidence, because the only thing harder than being neurodivergent in a neurotypical world is being neurodivergent in a neurotypical world without knowing it. For many neurodivergent people, being ourselves has led to being corrected, criticized, excluded, or rejected, and trying our best hasn't gotten us the results everyone else seems to be getting. If you know you're neurodivergent, you have some frame of reference for understanding those difficulties. If you don't know, you see your difficulties as flaws you need to correct, but they're not.
Neurotypical children learn from the consequences of their actions because the corrected behavior feels right to them and represents expansion of their skills and identity. For example, a child who gets into a fight with another child on the playground might be grounded by their parents, get detention at school, and have to see the school counselor with their peer to work through their problems, which helps them consider lost video game and recess time before getting into another fight, and teaches them to talk through their problems and consider other perspectives, in addition to learning that fighting hurts and they would rather not feel pain.
In contrast, consider a child who has a sensory meltdown on the playground, resulting in them being physically restrained by school staff, one of whom they injure in their attempt to escape the additional sensory overwhelm from being held. This child gets suspended and also grounded ~ longer than the other child, because their parents are mortified that their child could be so disrespectful to an adult.
When this child returns to school, they have to spend their recesses with the school counselor to work on controlling their anger and keeping their hands to themselves. But neither of those things is the problem, and no one is helping this child understand what actually happened that day, so losing video game and recess time isn't helping this child expand their skills and identity.
Instead, the consequences teach children like this that they can't control themselves even in situations they enjoy, that they can get in big trouble for something they don't understand so of course they can't change, and that adults can't help them. Do you see the difference?
Those might be extreme examples, but they're not unheard of, and what might be considered lesser examples are compounded because they happen over and over and over again. Can you think examples from your own childhood? Did you get yelled at to "calm down" when you were just having fun, or to "sit still" when you were really trying, but you just couldn't? Did you try to make friends, but felt like you just didn't have anything in common with your peers?
Or maybe you had a solid group of friends from your neighborhood, but when you tried to talk to them at school, they made fun of the vocal tic you couldn't control? Did you check and double-check your homework to make sure it was just right, only to get a low grade for spelling errors you didn't even know you made? Were you ever excitedly telling a parent about something, only to have them interrupt to make a joke about how you "never stop talking," which is still the family joke now?
Without an understanding of our neurodivergence, the automatic response to experiences like these is to try to change to meet the expectations. But think about those examples again, and tell me how an adult could change those things about themself, let alone a child. How do you change into a less energetic person? How do you change into a person who loves boy bands when you love Mozart? Or into someone who doesn't have the vocal tic you don't want to have, but do?
Even if you use a dictionary or spellcheck software, how do you change into a person who sees spelling errors that you don't see? How do you change into a person who is less excited, and doesn't say more than your family wants to hear, even though you have no idea where that line is?
How could you change any of those things about yourself without rejecting yourself?
Just giving those examples makes my chest tighten up. Just saying them makes me feel pressured to follow rules that don't make sense to me. It makes me feel exhausted and defeated, and none of that is happening to me right now.
For neurodivergent people who don't know they're neurodivergent, the cycle goes something like this: We are ourselves, and people respond in ways that hurt us, even if they don't mean to, we're not sure what we could have done differently, but we try to change anyway ~ it feels like we try harder than anyone has ever tried to do anything before ~ but we can't get the changes quite right or make them stick, we exert tremendous energy to be the version of ourselves we think other people want, but like absolutely everyone, we are ourselves, and people respond in ways that hurt us ~ and around and around it goes.
Which brings us back to being misdiagnosed. The byproducts of that cycle are completely natural, normal, sometimes even healthy, responses to how stressful and painful it is. But for the undiagnosed, they're out of context, so they seem to us, and to people around us, and to people who are diagnosing us, like symptoms of other things, so those are the diagnoses we get ~ the wrong diagnoses.
Always being worried about how you'll respond if your routine is disturbed looks like anxiety, and so does needing everything to be perfect so no one can call out your mistakes.
Feeling hopeless and exhausted from falling short no matter how hard you try looks like depression, and so does keeping to yourself because you don't have to meet anyone else's expectations when you're alone.
Doing things the exact way that makes sense to you so you feel like something is in your control looks like OCD, and so does having thoughts you can't stop about what might go wrong.
Feeling like nothing you do helps you reign in your impulsivity looks like substance abuse, disordered eating, "addiction" to the internet, gambling, or spending money, oppositional or antisocial behavior, or mania, and so do the periods of high energy you have when you can't hold yourself back anymore.
Feeling like there are separate versions of yourself for the different situations you have to navigate looks like dissociation, and so does feeling disconnected from yourself and others when your energy is completely depleted by trying to be different than you are.
Many neurodivergent people are formally diagnosed with anxiety or depressive disorders, obsessive compulsive or impulse-control disorders, bipolar, dissociative, or personality disorders, and sometimes those diagnoses are correct, which can make targeted treatment literally lifesaving. But many neurodivergent people are given diagnoses based on secondary symptoms without ruling out a primary condition, which is like going to the emergency room with symptoms of a heart attack and being told you're having a panic attack without a single test of cardiac functioning. That, by the way, is more likely to happen to females, just as neurodivergent females are more likely to be given primary mental health diagnoses based on secondary symptoms.
Whether or not a wrong diagnosis is given formally, undiagnosed neurodivergent people often identify with wrong diagnoses, which is far more damaging. You don't need a formal diagnosis of a depressive disorder to see depression as a fundamental part of your experiences and even your identity. Same with anxiety or any other condition.
I cannot tell you how many neurodivergent adults I've worked with whose self-concepts were built on beliefs they acquired in childhood that they couldn't do certain things because of their anxiety, that they never had close relationships with their siblings or parents because they were weird and didn't try hard enough to like what the rest of the family liked, or that they're just bad because they always got in trouble or stupid because they didn't try hard enough in school. Again, these were people who had neurodevelopmental differences from birth, but were given the idea that their struggles meant something was wrong with them, and their inability to fix problems ~ that weren't even the problems ~ caused them to become adults who see them as hopelessly flawed. How fucking horrible is that?
Because the actual problems were the systems and people who corrected, rejected, and dismissed them for being neurodevelopmentally different, which we can't fix by being less ourselves. If that worked, all the masking and minimizing and shrinking and self-loathing neurodivergent people have done would surely have fixed it, and it hasn't.
The baby steps of progress toward neurodivergence being understood and accepted, and neurodivergent people living happy, healthy, fulfilling lives, have come from being allowed, or demanding the right, to be who we are. But that's a topic for another day.
Today we'll wrap up with the third question: "I have a diagnoses, so how the hell could I have gotten to my age without knowing all the ways being neurodivergent really impacts people's lives?" The answer is: Diagnoses are not enough.
It goes back to the ways the DSM defines neurodevelopmental disorders, which have changed slowly over time, but are still limited, which limits professionals' understanding of neurodivergence. That means a very well-meaning psychologist, psychiatrist, or other physician could, and very likely would, assign a diagnosis and tell you ~ or your parents if this happened when you were a child ~ what it means and what should be done about it according to their education and training, which is their duty, and not give you all the information you need. Same if you're receiving treatment from a psychotherapist, and it even goes beyond that.
The limited understanding of professionals ripples out to create limited societal understanding, because people don't know what they don't know, but a lot of them love to tell you what they're sure about, even if they're wrong. So in general, we're inundated with messages telling us 'this challenge has nothing to do with your learning differences,' 'that problem would be solved if you took your ADHD medication like you're supposed to,' and 'you wouldn't have those troubles if you stopped using autism as an excuse for everything.'
Between what professionals have told us, what our family members and friends say, depictions in the media, and even our own thoughts about what our neurodivergence means and doesn't mean, we're in a kind of echo chamber of limited understanding ~ until we aren't.
Maybe you remember the first TikTok you saw of someone explaining that they were too self-conscious about their dyslexia to interact with classmates in school, which lasted through college and carried into their jobs, so they're just now learning how to make friends at the age of 50.
Or you recall finally understanding yourself when you read Temple Grandin's Visual Thinking, or the way you felt seen for the first time watching Jessica McCabe's TEDxTalk, or Penn Holderness use his hyperfocus to kick ass on The Amazing Race.
The echo chamber breaks & understanding becomes less limited when neurodivergent people are their authentic selves ~ in books & on stages, social media & reality television ~ but also in our interactions with people in our everyday lives, & especially in the ways we see & treat ourselves.
In spite of whatever the hell happened on the way to this point in your life, you can absolutely know who you are ~ neurodivergence and all ~ and you can unlearn the patterns of minimizing or hiding your authenticity, stop beating yourself up for things you do differently, and get off the never-ending treadmill of telling yourself you just need to try harder to be like everyone else. 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'm rooting for you ~ exactly as you are.
