Complexities of Defining ADHD
ADHD is a controversial topic, and it’s never been more relevant. Diagnoses are soaring right now, driven up by a variety of interacting forces. Open discussion about ADHD – and the related general concept of “neurodiversity” – has been exploding on the Internet. And recently, there’s been a very unfortunate Adderall shortage.
So I wanted to take an opportunity to share some thoughts about it. I would say that I was taking this opportunity to clear things up, but unfortunately, that might not be possible. The reality is a really muddy situation, and many people’s mental models – including many professionals' – are oversimplifications.
This is unfortunate because ADHD is an important issue, not just in childhood, but in adulthood as well. It is prevalent: according to one study, it affects 4.4% of adults in the US, and according to another, 2.8% of adults globally (numbers can vary greatly, for reasons we’ll discuss). ADHD can, especially if untreated, cause severe adverse life outcomes, including up to a 13 year decrease in life expectancy. Treatment for ADHD – especially stimulant medications – is very effective, and access to it is an urgent matter for those who need it.
Aside: ADHD: A Misnomer
There are a lot of misconceptions about it that cause people to think ADHD is less severe than it actually is, many to do with the name. ADHD, or Attention Deficit Hyperactivity Disorder, is named for the two traits that bother parents and teachers the most when they manifest in children: inattention and hyperactivity. While they are important in a classroom or disciplinary setting, they are not the actual core symptoms, or the symptoms that cause people with ADHD – especially adults but also children – the most trouble. And I will focus on adults with ADHD in this post, because I am an adult with ADHD.
So what are the actual core symptoms? Dr. Russell Barkley, one of the leading experts on ADHD, considers ADHD to be a misnomer. He summarizes it instead as an “Executive Function Deficit Disorder” because its core symptom is difficulty with executive functions, which he lists and explains in more detail in this article, essential reading to understanding ADHD better.
In a terminological distinction of questionable value, ADHD is considered a neurodevelopmental disorder like dyslexia or autism, which are considered distinct from a mental illness like anxiety or depression. Disorders of both categories are documented in the DSM, or Diagnostic and Statistical Manual of Mental Disorders. ADHD, while not itself considered a form of mental illness, does lead to an increased likelihood of developing a mental illness.
ADHD is a serious and relatively prevalent condition in adults, so it’s fortunate that such effective treatments exist, and that it has been able to be studied as well as it has been. Unfortunately, its causes are poorly understood, and even defining what ADHD is or what it means for someone to have ADHD can be surprisingly difficult.
In this post, I intend to explain why ADHD is so difficult to define, and explore some of the consequences of that difficulty.
Competing Approaches to Defining ADHD#
Let me start with an example: Trauma, especially Complex Post-Traumatic Stress Disorder (CPTSD), can have a lot of the same symptoms as ADHD. It can cause difficulty with executive function, which is the core symptom of ADHD. Specifically, it can cause trouble staying on task, keeping track of responsibilities and physical objects, and restlessness – all classic ADHD symptoms.
But how to think of that is something of a philosophical question: Is ADHD a pattern of symptoms with common coping skills and treatments? In that case, we could say that CPTSD can cause ADHD. Or is ADHD an attempt to figure out an underlying specific brain disorder? In that case, we wouldn’t want to say that trauma “causes ADHD.”
This question comes up surprisingly often; this connection between CPTSD and ADHD is just one example. It is a surprisingly nuanced question, and I’ve seen ADHD (and its connection to CPTSD) framed both ways by reliable sources. I don’t think it necessarily has a clear answer. At a certain point, it can feel like “arguing over semantics.” But it is important, because we need some way of categorizing and discussing people’s brains, if only to provide treatment.
In practice, the answer may depend on context. For a therapist teaching coping skills, it might be easier to think about it as “trauma causes ADHD,” and then teach the ADHD coping skills. For a psychiatrist, the underlying causes may (or may not) be more relevant, depending on how much it influences the effectiveness of various medications; treating the CPTSD with typical CPTSD medications (such as anti-depressants or mood stabilizers) might (or might not) be a better way of treating the ADHD-like symptoms, rather than prescribing an ADHD medication like Adderall.
Intuitively, it seems obvious: Split them up. We like to think of ADHD as a neat and tidy disorder, one that you’re born with, one that’s genetic. CPTSD is acquired, and has drastically different causes than a typical ADHD case. It seems obvious that different causes should mean different disorders. And if some of the same techniques are helpful, therapists can think of the ADHD traits caused by CPTSD as just that: “ADHD traits.” And if some of the same medications are helpful, we can just say something along the lines of “in some cases ADHD medications can help with CPTSD.”
But it’s harder than you might think to fully avoid basing the definition on the symptoms. For all the definitions in the world, in practice “people with ADHD” means “people diagnosed with ADHD” – and ADHD is diagnosed based on the symptoms. While research into the causes and underlying neurological mechanisms have made great strides, the best diagnostic tools we have don’t involve brain scans or genetic tests. Instead, you have to use some combination of surveying and interviewing the patient, surveying or interviewing people the patient knows, or doing cognitive tests to see if the patient is in fact impaired in those areas of cognition that ADHD makes more difficult.
All of these involve investigating symptoms, not causes. And ADHD diagnosis also requires that these symptoms actually cause problems. To quote the standard DSM (The Diagnostic and Statistical Manual of Mental Disorders), an ADHD diagnosis has this absolute criterion:
D. There is clear evidence that the symptoms interfere with, or reduce the quality of, social, academic, or occupational functioning.
This all paints a picture of a definition – or at least a diagnostic process – based on the symptoms. And yet, the DSM also includes a criterion that points in the direction of ADHD being a discrete disorder, rather than a collection of symptoms:
E. The symptoms do not occur exclusively during the course of schizophrenia or another psychotic disorder and are not better explained by another mental disorder (e.g., mood disorder, anxiety disorder, dissociative disorder, personality disorder, substance intoxication or withdrawal).
This would be more straight-forward if ADHD had a known, specific cause. If there were a single known mutation that caused ADHD – like the ones known to cause Down syndrome or Fragile X syndrome – it would be clear: you would either have ADHD or you don’t, based on whether you had that genetic abnormality.
But though there has been some research on the genetics of ADHD, it is far from definitive or conclusive. In fact, ADHD isn’t even 100% determined by genetics. Instead, it has an estimated heritability of 77-88%, which is a measure of how likely it is for a person with ADHD’s identical twin to also have ADHD, and related to how likely it is for their other relatives to have it.
And to be clear, heritability is difficult to study (and thus the wide range): It’s hard to control genetic factors from environmental ones, when you necessarily have to consider people who are blood-related to each other. Furthermore, this doesn’t mean that one “ADHD gene” represents all of this heritability – there likely are many different genes lumped in there, all causing (potentially different flavors of) ADHD, with different levels of heritability that then work out to a weighted average of 77-88%. And sometimes, related people might both have ADHD traits by coincidence, and that’s also hard to control for: How easy is it for a study to verify that the specific executive function deficits experienced by these relatives are similar?
Non-genetic risk factors also abound: people born prematurely are twice to three times as likely to develop ADHD. Modern ADHD research got its start with yet another risk factor: children recovering from Spanish Flu started having drastic behavioral shifts, that were then called “Minimal Brain Damage” or “Minimal Brain Dysfunction,” which was ultimately renamed ADHD. This has come to more public attention recently due to concerns with long COVID. (That article contains quotes from Russell Barkley, the leading expert on ADHD mentioned above when discussing executive functions.)
Given this diversity of causes, and our substantial but still incomplete understanding of the neurological mechanisms, do we have the knowledge necessary to think of ADHD as a disorder of symptoms, rather than a list of symptoms that tend to correlate with each other? I am far from the first person to consider this; some have even gone as far to propose that the word “disorder” be removed from the acronym as misleading.
So, returning to the CPTSD example, perhaps it makes more sense to add one more possible cause. Perhaps saying that CPTSD can cause ADHD traits is equivalent to saying that CPTSD causes ADHD, because “ADHD traits” is all the traction we have on this disorder.
Aside: Obligatory Caveat
I say “perhaps” for a reason. One reason not to would be if there were discernible differences, especially in treatment, between ADHD as caused by CPTSD, and other cases: for example, differences in effective medication.
And about medication I offer no opinion. I’m not a psychiatrist, nor am I any sort of expert on CPTSD – that is not the cause of my ADHD, personally. It’s a very complicated issue, especially because the causal arrow might point both directions, which is to say that recent studies have shown that not only can CPTSD cause ADHD traits, but ADHD is a risk factor in developing CPTSD. For any individual case, it may not be clear which came first.
As you can see, ADHD is not a simple, tidy disorder at all (and neither is CPTSD) and that, more than any particular position, is what I want you as a reader to take away from this.
Of course, we might someday discover a crystal-clear ADHD gene, or perhaps a couple of them. This would mean essentially that we were discovering new disorders, disorders that were previously all lumped under the umbrella label of ADHD. Once this happens, we’d have to decide as a society what to do to realign our labels.
And how to realign the labels will depend on the nature of the discovery. Perhaps one gene would cover the majority of people with ADHD, and therefore it might keep the name, with a new, objective, genetic test. The others would be considered “ADHD-like.” Or perhaps, a smaller group of patients would be covered under a narrower disorder, and then we would say things like “this used to be considered a type of ADHD, but now we know better.”
This may seem far-fetched, but it has already happened with autism. Similarly to ADHD, autism is primarily diagnosed based on symptoms. But there are genetic disorders, like Fragile X and especially Rett syndrome with substantial overlap in symptoms to autism. Rett syndrome in particular used to be categorized alongside autism in the DSM, as a “pervasive developmental disorder” alongside Asperger syndrome and autism proper – basically as one of several parts of the “autism spectrum.” But when its genetic and neurological mechanisms were discovered, it was removed from that section, and from the DSM entirely.
Perhaps, as more and more discrete causes of autism are discovered, this will happen more and more. Autism is currently a very large umbrella, appropriately termed a “spectrum,” covering profoundly disabled adults who cannot take care of themselves, and mostly functional adults who simply exhibit some levels of social and executive function difficulty.
Aside: Are disorders with multiple causes “real”?
One popular conclusion to draw from the muddied and ill-understood causes of ADHD is that ADHD is not real. One example of this is the fringe book ADHD Does Not Exist by Richard Saul, a neurologist who wrote this book with no backing from wider research, and who is not widely recognized as legitimate among ADHD experts. Nevertheless, the book is popular in some circles, and Richard Saul has gotten traction with some parents and teachers (and unfortunately even some doctors), and even wrote an opinion piece in Time Magazine.
In the book’s blurb, it says that “ADHD is actually a cluster of symptoms stemming from over 20 other conditions or disorders” – a statement that may be tempting to believe, given what I’ve said above, but is ultimately deeply misleading. So I thought I’d spend some time picking this argument apart.
First, we don’t know a complete list of what disorders can “cause ADHD,” but there’s lots of evidence that ADHD is primarily genetic. Whatever other problems the gene(s) involved may cause, and whatever shifts in categorization may be brought about by further research, there are definitely genes that do cause ADHD symptoms.
There are also definitely many people whose primary set of symptoms that raise to the level of needing psychiatric care are exactly that set of symptoms, the typical ADHD. Whether this set of symptoms is caused by one gene or many, and whether it is caused by genes alone or a combination of genes and environment, or even sometimes by environment alone, it is a real occurrence and a real problem that often occurs on its own.
That is enough to make ADHD exist.
But more importantly, this set of symptoms, whatever genes mediate them and whatever variety of causes they have, can be extremely debilitating. People need treatments for it now, and it has well-proven, well-studied, extremely effective treatments, especially medicinal ones. Even if ADHD were primarily caused by other identifiable psychiatric disorders, that would not mean setting aside ADHD medications. They would still be effective for all the people they’re currently effective for.
If anything, this perspective should make us study expanding the use of ADHD treatments and medications to situations where the symptoms can be said to be caused by other disorders, rather than give up on them for everyone in hopes of finding the “proper” treatment for the “underlying” disorder for every individual.
Of course, the popularity of this book and its flawed line of thinking is easy to explain: Many people have already made up their mind that ADHD medications are problematic, and are looking for any excuse to get rid of them. Motivated reasoning abounds.
What to do with the connection between ADHD and autism?#
I want to return to the topic of autism. As I mentioned, autism often comes with some level of deficit in executive function. That throws a wrinkle into the definition of ADHD, because a deficit of executive function is the core symptom of ADHD, the summary or cause of all the other symptoms.
Given this, it’s not surprising that many children and adults seem eligible for both diagnoses. In the past, following a model of ADHD where it was considered a discrete disorder with its own particular causes (even though we don’t understand them), practitioners had to choose one. A diagnosis of autism (or the then-separate diagnosis of Asperger syndrome) could explain any and all ADHD symptoms, so if both sets of diagnostic criteria were met, Asperger syndrome was the one chosen.
But that was changed in the most recent edition of the DSM, the DSM V, so now both diagnoses are possible in the same person. This has been a great step forward pragmatically: It has allowed children and adults who exhibit traits from both disorders to get access to better treatment, especially stimulant ADHD medications, which are among the most consistently effective psychiatric treatments modern medicine has ever developed.
But this has also led to some surprising, and philosophically challenging, results. Now that it’s possible for a person to have both diagnoses, we have found a huge amount of comorbidity, which is correlation between two disorders – an amount of comorbidity that leads to questions about whether we’re categorizing these disorders correctly.
According to a meta-analysis 50-70% of those with a diagnosis of ASD (autism spectrum disorder) also meet the criteria for a diagnosis of ADHD. Many experts believe the number should be even higher. Some even believe that all autism cases cause executive dysfunction and therefore can be expected to lead to ADHD symptoms – and that therefore we should no longer allow concurrent diagnoses.
In the other direction, we necessarily see lower numbers, because ASD is less common than ADHD. Still, around 20%-30% of people with ADHD are diagnosable with autism, especially if it is specifically screened for. Given that ADHD is about 2 to 2.5 times as prevalent as autism (depending on the studies used), these are the numbers we’d expect mathematically. The connection may be even stronger if we consider the prevalence of specific autism symptoms, such as sensory sensitivity, in cases where a full autism diagnosis isn’t indicated.
So what should we do with this? Given that both ADHD and autism have unclear and diverse causes, we treat them in practice, if not always in theory, as correlated symptoms or traits. But if they’re also correlated with each other, as they seem to be, then what basis do we have for separating them? Should we merge them into one disorder? Given the relative prevalences, should we consider autism to be a more severe form of ADHD? A more narrowly defined subset of it?
If we were to combine them, it wouldn’t be the first time two disorders were merged – even ones that might seem drastically different from the outside. The DSM V merged autism and Asperger syndrome into one diagnosis, “autism spectrum disorder.” And ADHD used to be considered distinct from the non-hyperactive ADD, but now it is just one disorder, ADHD, which can then be subdivided hyperactive, inattentive, or combined “presentations.”
Many on social media have already made up their mind, and rushed ahead of the experts. One particular Instagram post asked, “Is ADHD on the autism spectrum?” In spite of the stereotype that all articles titled with a question can be summarized as “no,” the linked article gave an enthusiastic, almost gleeful “yes.”
I commented that if ADHD and autism are connected, there might be a better way to express this connection than saying “ADHD is on the autism spectrum.” In fact, given that ADHD is the more common diagnosis, perhaps it would be more accurate to say that autism is on the ADHD spectrum – and probably less stigmatized at that. For this, I was yelled at for being an ableist. Ah, the folly of writing things on the Internet (says Jimmy, while writing a blog post on the Internet).
Less controversially, many have adopted the term neurodivergent as a de facto umbrella term for autism and ADHD – and other disorders, like CPTSD, that share traits with them. This term originated from autism advocacy, to shift from a model where such disorders are treated as pathologies to a model where they are treated as differences, fully natural and possibly even beneficial.
Theoretically, the term neurodivergent is meant to include anyone whose brain substantially differs from the brains of average – or neurotypical – people. If this theoretical definition is given credence, especially when coupled with an insistence that it doesn’t have to refer to a pathology, it can become dizzyingly broad almost to the point of meaninglessness. Are left-handed people neurodivergent? Are people with anxiety? Are people with extraordinary talents, even when not coupled with any symptoms of any recognized disorder? If the definition is broad enough, then there won’t be a substantial number of neurotypical people left! Does that make the term meaningless? Or is that, in fact, the point?
But in my experience, the term primarily seems to be used to describe the nebulous space of traits with substantial overlap with autism and ADHD – such as autism and ADHD themselves, and disorders with significant symptom overlap, like sensory integration disorder (SID), and, of course, CPTSD.
This serves a practical purpose: It allows people to share advice, common experiences, and coping mechanisms without getting into the trouble of playing the game of which specific diagnosis they’re for. And while sometimes there’s glitches (such as universal human experiences being depicted as “neurodiverse” experiences), overall, this is a helpful thing.
But while the Internet has addressed the terminology problem appropriately for the goals of sharing empathy and coping skills, professionals still have to deal with the panoply of diagnoses. For them, there are many practical questions to wrestle with:
- Should a person with both ADHD and autism traits be diagnosed with both?
- Should they be diagnosed with autism only, out of philosophical reasons, as was required in the 90’s under DSM IV, even if the ADHD traits are the ones that actually cause them the most trouble?
- Is autism a term for a particular sub-type of ADHD, and should it automatically come with an ADHD diagnosis?
- Should ADHD interventions and medications be tried more often for those whose diagnosis is just autism?
- Should there be more mechanisms available for people to switch from an autism diagnosis to an ADHD diagnosis, or vice versa?
- If so, how can these mechanisms be made available to children who are not capable of effective self-advocacy?
ADHD and autism as spectrums#
Aside: Plural Forms
I expect this article to have a lot of neurodivergent readership, and we tend to be a pedantic lot, so I want to clarify something even though it’s objectively unimportant:
I was really tempted to write “spectra” instead of “spectrums” above, but as we’re discussing the metaphorical concept of a spectrum, and not the physics concept, I thought it would be unnecessarily confusing. The dictionary accepts the regular English plural in addition to the Latinate one, and that is the plural I have decided to adopt for this article.
After all, there’s no way that it would be appropriate to pluralize “stigma,” when used as a mental health and disability rights term, as “stigmata,” the classical Greek plural of that word.
This is made even more complicated by the fact that as with autism, ADHD traits come on a spectrum. While ADHD on its own normally doesn’t cause the types of profound disability associated with severe autism, it can cause serious struggles and suffering. Part of the stigma of ADHD is that it is not taken seriously as a deeply disabling condition, which it very much can be. Everyone knows someone who has it, but who manages it successfully with coping skills and/or medication. Everyone knows someone for whom it is – given medication or coping skills – just a personality quirk. And people project that understanding of it onto someone who has drastic problems functioning.
Meanwhile, mild autism is treated as a catastrophe, even when it’s extremely mild, even when society would be better suited treating it more like a quirk. Erring on the side of caution is still erring.
To paraphrase another Instagram meme that spoke to me greatly: How can it be that ADHD and autism are such closely related disorders, but ADHD is treated as a quirky personality trait and not taken seriously, and autism is treated as the devil’s work that has to be eradicated?
Given this, if a person, especially a child, can be diagnosed with both autism and ADHD, but the autism is mild and the ADHD is severe, ADHD may be the more appropriate diagnosis not for any objective reason, but simply for the reason of avoiding the stronger stigma.
But given the subjective nature of diagnosis, and the fact that both disorders are (in practice if not in theory) correlated bundles of traits, it’s even worse than that. The autism spectrum (and the ADHD spectrum) are normally considered to range from mild autism (or ADHD) to severe autism (or ADHD). But is there any evidence of a solid cut-off?
For genetic disorders, you typically either have it or you don’t. But for disorders that have a variety of causes, many of them unknown (even if many are heritable), that are on a spectrum of severity, there’s also the possibility of almost having the disorder. There’s people out there who almost have ADHD, or almost have autism.
There’s lots of people like this: People with “sub-clinical” ADHD or autism, or with “some ADHD (or autism) traits.” To analogize to a different field of medicine, they are the neurodevelopmental equivalent of people who have to squint a little more than average to read things far away, but don’t actually need glasses. Or people who have a little trouble telling green apart from red, but can figure it out with mild difficulty.
Perhaps such a person is one criterion short of the DSM checklist. Or perhaps they check all the boxes, but they’ve built a life for themselves where it isn’t a problem, and they fail to check the all-important box of experiencing significant “impairment in functioning.”
The spectrum of such a disorder extends from the most severe cases to the most mild, yes, but it doesn’t stop there. It extends through these sub-clinical cases, and beyond, to people with normal executive functioning (in the ADHD cases), and then great executive functioning, and then perhaps even to people who have opposite but equally dysfunctional traits.
Aside: An Anti-ADHD?
This was referenced in the article where Dr. Barkley was interviewed, where he discussed a disorder he characterized as “the opposite” of ADHD, but I suspect it’s more complicated than that.
In all honesty, from the brief description, it sounded like a blend of inattentive ADHD and mild autism to me, but perhaps I didn’t understand it correctly. I suspect some people with either or both of these diagnoses will fall into this new diagnosis instead, if and when it becomes available.
This all goes to show how much we’re still learning about this topic.
We use the term “on the spectrum” as a euphemism to mean someone who has autism spectrum disorder, but the term is really a misnomer. I’m not trying to change how we talk – I know that is beyond my power – but I do believe, in a more literal sense, everyone is somewhere on the spectrum of how much autism they have compared to the “average person.” This is true even if the amount of autism they have is negligible or even negative. And likewise with ADHD.
And you have to draw the line somewhere, but the line can move. If it’s a normal distribution, which is the most normal type of distribution to occur in nature (thus the name), most people over the line are going to be close to the line. That is to say, not only will most (ADHD or autism) cases be mild, but a substantial portion of cases will be marginal, and will genuinely be a matter of opinion.
You might assume that most people who have ADHD have clear-cut ADHD, but that simply is untrue. Most people who have ADHD have mild ADHD, and a substantial number barely have it. These people also need treatment, because by definition, the line should be put so that people who are on the ADHD side of it are impaired in functioning.
Aside: Are disorders on a spectrum “real”?
Unfortunately, the idea that these disorders are defined by symptoms and possibly on a spectrum that includes neurotypical people leads some people to conclude that therefore ADHD isn’t a “real” disorder, like in the provocative title of this article: “Is ADHD a Real Disorder or One End of a Normal Continuum." I wish I didn’t have to address this, but unfortunately, given the level of ADHD denialism in society, which will take any excuse to deny the reality and severity of ADHD, it’s important.
It is a false dichotomy to think that something can be a disorder, or one end of a continuum, but not both. Being too far along on a continuous spectrum can be a real medical problem. For some reason, we have no trouble with the idea of considering “high blood pressure” to be a disease, even though the cut-off for what’s considered high is sometimes adjusted, and even though blood pressure readings form a continuum. Similarly, we have no trouble taking diabetes seriously, when it too is on a spectrum, and we even have names like “pre-diabetes” for other ranges on the spectrum. Why we have difficulty applying similar reasoning to neurodevelopmental disorders is beyond me.
ADHD is more complicated than these, because as I discuss, the line is drawn not based on where it causes problems for the body, but where it causes problems in context – and context changes. But that doesn’t mean that it’s not real. Many real things are not clear-cut binaries – few real things are clear-cut at all. ADHD, and ADHD diagnosis, is complicated, not because ADHD is “not real,” but because it is real.
The fact that ADHD and autism are not clear-cut binaries does, however, lead to a number of weird effects.
It explains why children who are young for their class are more likely to be diagnosed with ADHD – something I am sure is true for autism as well. They are, after all, more likely to experience “impairment in functioning” because of their traits, because they have higher expectations of them in their context – and these impairments are more likely to attract the attention of the adults in their life.
It partially explains why the number of cases fluctuate over time. Both rates of autism and ADHD diagnosis are on the rise, and I’m sure part of that is attributable to better screening and better access to health care. But perhaps some of that is also attributable to more demands placed on our executive function, and our social conformity.
My impression is that society has gotten more difficult for mildly neurodivergent people over time. On the autism side, society has gotten more and more complex, more ironic, less rule-driven, and more informal – that is, there are more unwritten rules (that are changing faster than ever between generations), and fewer explicit ones. On the ADHD side, more and more distracting devices and social media apps degrade our attention span, as we’re expected to navigate increasingly Kafkaesque bureaucracies with less and less social support. I could write an entire blog post on how society is getting less ADHD-friendly.
This “spectrum effect” almost certainly explains why many adults “grow out of” their childhood ADHD – they didn’t actually grow out of it in the sense that they’re now in a discretely different category. Rather, what happened is that they matured and improved in absolute terms with respect to their executive function (as everyone does), and also developed coping mechanisms (as everyone does to make up for those situations where their executive function doesn’t naturally reach the task at hand). In so doing, they drifted over the line of diagnosability and clinicality, but most such people are almost certainly still on the “ADHD” side of things.
Autism is seen as incurable out of recognition that you can’t ever discretely jump categories. ADHD is seen as something you can grow out of in recognition that you can drift over the line from disorder to quirk. I believe from personal experience that this is a difference in attitude rather than fact – that those formerly ADHD children who become “neurotypical” adults are better described as no longer “clinically” ADHD than no longer ADHD at all. And, likewise, there are likely plenty of people whose childhood autism spectrum diagnosis (e.g. Asperger syndrome) may well have been valid, but who as adults would never be able to be diagnosed with it if evaluated from square one.
This explains at least part of why ADHD diagnoses went up so dramatically during COVID – people’s coping mechanisms were shattered by the restrictions and lock-downs, or by the stress and anxiety of avoiding the disease, or by the political turmoil. I know my ADHD and anxiety got much worse over COVID, so that I felt I’d lost 5 years of maturity and emotional progress. I’m not surprised that it brought some people over the line.
But given that ADHD and autism are so clearly connected, this has other consequences as well. Severe or unmedicated ADHD can be as disabling as mild autism, but different. It does come with social difficulties, often (but clearly not always) different from the autism ones. Can you tell the difference between a deficit in social performance and a deficit in social understanding, especially in a child? They raise many of the same red flags.
This leads to the following odd effect: Severe ADHD can often look like mild autism. I don’t mean just to the untrained eye; I mean also to experienced professionals. And in many cases they do go together; severe ADHD often comes with autism. But in some cases, severe ADHD gets mistaken for autism when it is not autism, especially because people will assume that ADHD is mostly relatively mild, and that therefore severe problems with functioning must correspond to a more severe diagnosis.
In situations like this, if the autism traits are mild enough, the ADHD will sometimes be the disorder that requires more treatment, or even the only disorder that is severe enough to be clinical and require treatment at all. But if it is diagnosed, autism is the disorder that causes more concern, and gets more institutional attention.
Sometimes, this institutional attention is a good thing, and can be used to get treatment that can then be tailored to the individual. But sometimes, it results in ill-tailored, overdone treatment instead, and all the stigma that comes with it. And of course, a lot of those more extreme treatments are never appropriate for anyone: Even when extreme interventions are in fact called for, not all extreme interventions are created equal.
Thoughts on “neurodiversity culture” vs medical perspectives#
I do not want to arrive at the conclusion that professionals should untangle this by uncritically taking as fact everything neurodivergent people say, especially on the Internet. Internet neurodiversity culture has plenty of its own issues, and some of that is an insistence on believing everyone’s experiences that has spilled over into believing everyone’s conclusions, even if they’re questionable. Half-baked opinions are asserted as gospel truth, to be dissented from only on pain of extreme social censure – which is hard for people who struggle with any of these disorders to deal with proportionately.
Self-diagnoses and peer diagnoses are common. This is understandable because it helps people find coping mechanisms that are useful to them and answer their questions. But it can also be problematic, because sometimes important and useful treatments are missed. And people who have some ADHD or autism traits – which absolutely everyone can show from time to time – can trigger these informal diagnoses that are then also treated as unquestionable dogmas. And, of course, perfectly universal experiences are sometimes presented as signs of neurodivergence – sometimes because neurodivergent people experience them moderately more often than average, and sometimes just because it’s hard to tell subjectively what’s part of your disorder and what’s just a part of normal life.
But I would ask professionals (and parents, teachers, and loved ones – “hearts,” as How to ADHD calls them) to take neurodiversity culture seriously, even if not always at face value. Please listen, but with a grain of salt. It’s a complicated nuance, and nuance is one of the hardest things a person can ever accomplish, but I think it’s possible.
That includes this blog post – I hope that everyone reading this believes my experiences (and most of my knowledge and opinions are very strongly derived from extensive personal and vicarious experiences). I hope that my readers take my arguments and reasoning seriously, because it is greatly informed by both my experience and the huge amount of both research and consideration I’ve poured into this topic – consideration, again, heavily influenced by a deep familiarity with the facts on the ground.
But that does not mean that I’m necessarily right about all of my conclusions, even where I speak confidently. This is a complicated issue – as I hope I have conveyed – so it’s hard for anyone to be completely right about it. But also, this is not a professional interest of mine. I have studied and contemplated this topic as thoroughly as I have not because I have taken classes on it, or been naturally interested in it (especially in a “hyperfocus” or “special interest” kind of way – I could write an entire blog post about that terminology as well), but because I have been repeatedly forced to by circumstances – both mine, and those of other neurodiverse people in my life.
I know that detracts from my credibility in some ways, but hopefully adds to it in others, and that people take me seriously even when I fail to use the exact right terminology du jour, whether that be medical terminology or cultural neurodiversity terminology.
If there’s anything I’d ask people to take away from this, it’s that neurodivergence is anything but simple and straight-forward. Neither autism nor ADHD is a discrete disorder with an objective test. The way we organize symptoms and traits into diagnoses is arbitrary and imperfect; we can only hope that it will improve over time.
That said, ADHD medication is extremely effective, and stimulant medications are among the most effective and well-proven treatments available. I personally take Strattera, a non-stimulant, and it has been life-changing for me, addressing many issues that have caused me real problems throughout my life.
We cannot just stop prescribing Adderall because ADHD is hard to define. We can’t just wait until we’ve pinned down these definitions more to treat it. Whether or not it is caused by one or many underlying mental disorders or mental differences, ADHD is a label for very serious symptoms, and it is only properly diagnosed when there is an impairment in functioning – which there often is. It leads to vastly worse life outcomes, worse career performance, more spending (the “ADHD tax”), and in too many cases, poverty. As I mentioned in the introduction, it is objectively linked to drastically lower life expectancy. It is fundamentally mistaken to treat it as so categorically less severe and serious than autism when it is so closely related – and when it is so readily treatable with medication.
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