it is time we stopped using the terms “autism” and “adhd”. they are not simply poor descriptions but harmful and incorrect and that does a terrible disservice to a neurologically-varied community of millions.
to understand why these terms are so problematic, we have to dive into what each is and how it is seen from the inside and outside but the first hurdle to overcome has nothing to do with these terms specifically and everything to do with people being resistant to changing terminology, especially surrounding medical issues. without fail, each time i discuss the need to overhaul both the naming and diagnostic models for autism and adhd, i am greeted with a version of “everyone already uses and understands these terms and you can’t just change the names of things”.
my response is relatively simple. “autism”, the term, was first used in the early twentieth century and first diagnosed in the 1940s, less than a hundred years ago, despite it having existed for millennia. “adhd” has gone through multiple name changes even since the 1960s with none being particularly accurate or helpful to the majority of those it describes and the latest iteration only being codified in the late 1980s. none of that really proves the usefulness of change but it sets the stage for the rest of the answer. in the early twentieth century, when these descriptions were first coined, many other terms were in common usage. “mental retardation” as a diagnosis was once even broken down into “idiots”, “imbeciles” and “morons” in medical textbooks — we now use a much more accurate description, “intellectual and developmental disability”. “consumption”, “white death” or “phthisis” is now called tuberculosis. “falling sickness” is now called epilepsy. “putrid fever” is called diphtheria. “dropsy” is called edema, not a disease but a symptom. gargoylism is called mucopolysaccharidosis or “hurler’s syndrome”. “woolsorter’s disease” is called anthrax. “great pox” is called syphilis. “gleet” is called gonorrhea. “gay-related immune deficiency” is now called aids (acquired immunodeficiency syndrome). “spanish fever” is now called influenza, the flu, a term we now use regularly.
there are pages more examples of updated naming to correct misunderstandings and inaccuracies but i have no doubt you already get the point. just because a name exists and is common in both the medical world and the public sphere, that doesn’t mean it shouldn’t and can’t be fixed. just as it is unthinkable for a doctor to diagnose a newborn with “gay-related immune deficiency” or “consumption” or document them as being an “imbecile” or “mentally retarded”, it should be just as outdated to be diagnosed as “autistic” or “adhd”.
before we continue, it is important to distinguish between things you have and things you are. to use their current terminology, autism and adhd are not “have” things but “are” things for the simple reason that they are genetic neurological states no different from being human, canine or feline. we don’t talk about a cat as “having felineness”. in much the same way, while it is certainly useful to discuss “blackness” and “whiteness”, we talk about people as being black or white, not “having blackness” or “having whiteness”. it is the same kind of awkward to talk about someone “having autism” or “having adhd”. that is not to say autism and adhd should not be discussed in the abstract as nouns. just that “someone with autism” is simply a misunderstanding of what autism is. we can talk about diseases like tuberculosis, cancer and smallpox as things someone has. but autism and adhd are neither diseases nor disorders.
that is where the problem begins in earnest. the current terminology is “autism spectrum disorder”, which goes zero-for-three on accuracy. it is not a disorder. it is not a spectrum. and it has nothing to do with what the word “autism” actually means — “self-absorption”. in fact, the word itself is the opposite of what autism actually is from a neurological perspective. “attention-deficit/hyperactivity disorder” is again incorrect in its description. it is not a disorder. it is not a deficit of attention. while some people certainly are hyperactive, that is not present in the majority and it is a secondary effect even where it does exist. perhaps one-for-four in the most generous sense but far closer to autism’s zero on the accuracy scale.
“neurodivergence” is a better but still somewhat-misleading way of thinking about these issues because it implies a relationship that doesn’t exist. it paints a picture of everyone being somewhere on a scale of diverse neurology where everyone is either closer to or farther from autism and/or adhd, giving rise to the notion of “everyone’s a little autistic”, which is simply incorrect.
a better way to think of this is “neurovariance”. in other words, there is neurotypical and neurovariant and you are in one category or the other, not at a place somewhere on a spectrum of neurology. while there may be other neurovariances, something i am not prepared to debate here, what are currently termed autism and adhd are certainly two that need to be addressed and retermed. i propose “sensory neurovariance” and “focal neurovariance”, respectively, as accurate descriptors. from a pronunciation standpoint, as these things are often important details, i would suggest we use snv (sin-vee) and fnv (fin-vee) for the two primary ideas and sfnv (sin-fin) for the correlation between them.
from here on, we will use “sensory neurovariance” or snv and “focal neurovariance” or fnv to describe what are currently and commonly termed “autism” and “adhd” as well as sfnv (sensory-focal neurovariance) to describe “audhd” or “autism-adhd”. if this is confusing at any point, it may be helpful to highlight this to refer to…
- snv (sensory neurovariance) = autism
- fnv (focal neurovariance) = adhd
- sfnv (sensory-focal neurovariance) = audhd
first, we have to understand that we are talking about biological variance here, not variation of diagnostic outcomes. these are two purely genetic shifts and the ideal diagnosis would be genetic testing but that is not currently available because they are not single-trait entities like hair or eye color. testing for a single genetic difference will never give anything like a result for either. whether there will ever be a genetic test capable of diagnosing snv, fnv or sfnv is an open question but, if it arrives, it will be long in the future so we must not pin our hopes of progress to a potential but unlikely eventuality.
there are myriad criteria for diagnosis but what we are looking for is more accurate description of the underlying situation in the body, not just of the symptoms and outcomes, which is where much of the existing confusion began with “autism” describing reversion to the internal world of the self, which is how some people see it from the outside, and attention issues and hyperactivity being what parents and doctors often found problematic in certain fnv children. this is an important distinction because, especially when it comes to snv, there are multiple types with little if any outward similarity in symptoms but the same underlying cause. this difference has gone through multiple naming conventions with none solving the deeper issue. it began as being distinguished between “autism” and “asperger’s syndrome” then, once it was more problematic in social circles to name a medical idea after a die-hard nazi doctor like hans asperger, “low-functioning” and “high-functioning” autism and, on a similar but not-identical criteria scale, low, medium and high-support-needs autism.
these are all terrible descriptions of the underlying issue, though the last is at least helpful in terms of how much assistance people need on a daily basis to function. it does ignore the fact that the level of support needs required is often the result of level of masking and how burned-out people are prepared to get before asking for help but it is at least a start to providing that assistance so i applaud the effort.
the process of diagnosis for snv/fnv/sfnv is what i often refer to as “diagnosis by numbers” or “trait roulette”. an accurate diagnosis is relatively simple procedurally, making it altogether bewildering why it is often so difficult and cost-prohibitive to acquire. think of it this way. take a handful of sand, roll it in ink and throw it at a huge sheet of paper. the pattern it will make won’t be random but it will appear that way at first. what it will be is a scattered collection of dots. these are neurological traits. now take a smaller handful of sand and roll it in a different color of ink and repeat the task. some of the new dots will overlap the old dots while many won’t. note every overlap. those are the positive diagnostic traits — your “diagnosis by numbers” criteria, so to speak. practically-speaking, this is how snv/fnv/sfnv diagnosis is (or at least should be) conducted. while it is rarely done in a combined manner, which i argue should be the only way it is performed, checking for snv/fnv truly is generally done this way, though it is rarely conceptualized like this.
the deeper description goes something like this. a series of traits is identified for snv and fnv. patients are identified as either having or not having these traits. a total (or at least a weighted total) is recorded and a high enough number results in a diagnosis. in the case of snv, for example, some of these traits include stimming, hyperfixation, intense routine, varied emotional reciprocity, literal thought.
to use our scattered ink dots model, a good way to think of it is that each dot represents a trait and we can draw a border around the specific traits designated for snv and fnv. with enough dots being hit by both colors — where the test criteria are and where the person actually exhibits the traits — we have diagnosis. because there is significant overlap between the traits for snv and fnv, sfnv is the resulting diagnosis when they score high enough in trait matches in both categories.
this is why it is so misleading to think of snv/fnv as a spectrum. these are diagnostic criteria far closer to checkboxes on a long list and identification can be conducted simply by asking a series of yes/no questions. yes, it is a long list of questions to get an accurate result. but it is not a question of “more snv” or “more fnv”. a spectrum is a very specific visual descriptor ranging from low to high in terms of intensity — the typical example is the electromagnetic spectrum ranging from long-wavelength, low-energy (\<10^-5ev) to short-wavelength, high-energy (>10^5ev) with visible light in the 2-3 electron-volt range. snv/fnv doesn’t work that way in much the same way as someone is not more or less blue-eyed or five-fingered or oxygen-breathing. you can certainly have more or fewer traits just like you can breathe more or less oxygen. but that doesn’t change the underlying situation.
if we zoom in on snv, we quickly discover a problem of divergence in traits that has no impact on whether a person is snv but has a massive impact on how it changes their behavior — the reason for the terms high-functioning and low-functioning, despite them being misleading. it was described as two ends of a spectrum but, again, the spectrum is misleading. to understand why, we must look more deeply into the s/f part of snv/fnv.
what exactly are snv/fnv?
they are neurological variances or variations in how information is processed by human neurology. there are many different aspects of how information is dealt with in our bodies but two of the most significant are sensory and focal processing. some of the others include more basic processing like hormonal and electrochemical as well as emotional and even sexual, to the extent emotional and sexual can be treated as separate for the purposes of theoretical exploration. of course, all processing in our bodies is neurologically-linked. but it is useful to distinguish different types much like we talk about sound and touch as different concepts despite the fact that both are the impact pressure of physical forces on our bodies — a hand touching my arm compared to the movement hitting my eardrum, both being physical movement but having very different results.
each human experiences sensory input and focus change. they are fundamental to how our neurology works. imagine sensory input being graphed as a line like on a seismograph, the tool we have all seen recording earthquakes. it oscillates up and down depending on the intensity of the vibration of the earth as paper moves along under it and gives a record of how strong that movement is over time. take that same image from a neurotypical person and draw it along a wall and label the lowest point 3 and the highest point 5. go all the way to the left and fill in the rest of the numbers to scale, 0 to 10, then draw horizontal lines across at 3, 4 and 5. what you now have is a clear description of what you can think of as “filtered sensory processing”, something neurotypicals do without having to exert energy. this is the graph for a single sense — for example, sound — over a period of time.
what happens is that sensory input comes in somewhere on that scale, 0 to 10, and is compressed and filtered to between 3 and 5 with 4 being approximately “calm” or “neutral” sensory experience for that particular period. for example, if this is sound, anything below 3 is either discarded as unimportant or amplified to make it significant enough for the mind to notice by bumping it up to 3. anything over 5 is either discarded by the mind treating it as outside the realm of understanding or by softening it to 5 and reacting accordingly. the mind has all this performed for it before it ever has to deal with it. because nearly all sounds are routine, everyday occurrences, the vast majority of the soundscape surrounding us is filtered out as unimportant, less than 3. that gives our minds a tiny fraction to deal with. the hum of all the electrical devices around us, the sound of the wind and the movement of our bodies and those around us against objects including clothing, breathing, soft noises in the distance, etc. they are all filtered out.
with snv, however, that filtration and compression doesn’t happen. the result is that the mind has to actively process each input and there is no way to immediately determine which is significant. in other words, a person speaking to you has to compete with the breathing of everyone in the room, the dog barking outside, the hum of every electrical appliance within perhaps a three-room radius, the vibration of the heating system, the movement of water in the pipes and thousands of other low-level ambient noises, just within sound. the impact of this from infancy is something snvs get used to to a greater or lesser degree but that adaptation comes with a variable high cost and potential high reward. some people get only the cost while others also get the reward. the cost is guaranteed.
the cost is sensory overwhelm. not in the sense of “everyone wants me to work hard today” or “it was stressful because i had to make dinner quickly” but “my mind doesn’t have the processing power to deal with all this input so it stops working”. in an adult, that can look like partial catatonia or burnout. in a young child, however, that can have a much more noticeable result — inability to learn, even things like language and speech. this is where the issue comes from that the same underlying issue can have vastly different results. in some snv children, the need for vastly-increased sensory processing makes is so far more information can be dealt with. in other words, it creates higher intelligence through attrition. more neurological ability develops far more quickly because it is necessary for survival. in others, the brain goes into safe-mode, so to speak, choosing survival through rejection of sensory input. this creates the myth of the “autistic genius” and “autistic idiot” — an error in one way but based on the reality of two diverging outcomes from sensory processing overload. i would suggest we call these snv-a (sensory hyper-processing) and snv-b (sensory hypo-processing), not one being better or worse, more or less severe, just classification because it is useful for outcomes and diagnosis.
many snv-as think of themselves as average intelligence but this is rarely, if ever, the case. the reason for the misidentification is simple. snv-a typically manifests itself in young adults as social difference, among other things. it means people gravitate toward those who are both accepting and stimulating. people who are not afraid of someone who communicates differently and will talk about hyperfixations and not engage in meaningless smalltalk and unnecessary tradition or convention. in other words, snv-as avoid average, more-traditional, more-conservative, less-intelligent peers. they self-select above-average-intelligence counterparts because they are the ones most likely to be accepting, engaging friends. snv-as also tend to do well in controlled academia like college, given the opportunity, despite there being many aspects of the educational system, especially the k12 system, that are difficult. the academic side rarely is by comparison because of all the years of processing so much extra sensory input with the same neurological system that now has to deal with academic information. as a result, what appears “average” and “normal” from an intelligence standpoint isn’t. what we think of as “rednecks”, “hicks”, “bumpkins” and “hillbillies” are average. that is the human norm. of course, that is not a value judgment, simply a description of the state of human intelligence. when all your friends are college graduates and professionals, if you think you’re “a little above average but certainly not an autistic genius”, that description is misleading.
fnv has a different path to get there but a similar result. the focal processing system is less fundamental for development at a very young age because the norm for early-childhood development is lack of focus. that is something that develops later and it is typical for all children to be easily distracted, especially infants. anyone who has spent any time with a toddler will understand that intuitively. time in a primary classroom often feels like a collection of spooked deer, even when the children want to pay attention to something, after a few minutes. a high-school classroom, however, is a very different experience, where most students have developed the ability to concentrate for an hour on a topic as long as the topic is engaging. there is no fundamental overwhelm from masses of sensory input to make language-learning and daily functioning difficult at a young age so that extreme result tends not to happen in fnv.
what does arise, however, is that focusing on things follows the same graph comparison as sensory processing in snv. neurotypical focus is related to intent while fnv focus is only driven by interest and immediate outcome. in other words, the fact that something has to be done or that there are consequences to it not being done doesn’t make an fnv any more able to focus on a task that is repetitive, uninteresting, undesirable or unimportant. focus comes from being intensely attracted to a task in the moment, usually by an immediate outcome or hyperfixation. focus doesn’t get compressed into the 3-5 portion of the chart. it can certainly inhabit that region but often is vastly more intense or far lower than even the unfocused state of a neurotypical. as such, this was classified from the outside as not paying attention or being hyperactive. but what it is inside is a completely different method of focus. certainly, some children can be hyperactive if they have nothing that catches their minds and holds focus. it can definitely look like not paying attention. but neither is necessary and both are certainly not accurate descriptions of the underlying processes.
the end-result can often be the same type of intelligence resulting from having to go through school and college without the fundamental focus neurotypicals exhibit. studying without being able to sit still and read the same thing hour after hour, learning enough to pass without really being able to pay attention in class because it simply “doesn’t hit” that day. it trains the mind to either give up or develop better abilities to retain and process information. in other words, the same divergence in fnv occurs, perhaps less intensely but visibly, as in snv, leading to either academic failure because the system doesn’t mesh with focal neurovariance or academic success and notably-higher intelligence after years that is often masked by self-selecting a friend and coworker group with the same types of success and intelligence.
resulting from all these issues, what we have is a failure to describe and understand snv/fnv/sfnv and much of this comes from the terms used to talk about them and a medical system that misses the fact that they are based on purely-genetic variations in sensory and focal neurological processing. correcting these issues would have a significant positive impact on lives of everyone in the neurovariant community. i can only hope that improvement may come in the near future.