the issue with asperger’s

the issue with asperger’s

there has been a significant amount of whining both within the autistic community and outside it. the first is mostly because of oddly-missing information. the second is, i suspect, based in our cultural obsession of late with shaming people and taking any excuse to make noise about things that sound outrageous, despite no real personal connection.

so i thought it would be a good idea to talk about this issue and perhaps make some things a little clearer. i want to make this perfectly plain, though. this is not the beginning of a discussion and if you don’t agree, that’s perfectly fine. i’m not interested. you are entitled to have your own view on anything you like. there’s no point in sharing it with me as i don’t read comments and my feedback is moderated to include only questions and teaching.

with that out of the way, let’s look at the problem people have with “asperger’s” (asperger’s syndrome, it is usually called) as a diagnosis. it’s two things, really. one is that they say it’s not a real diagnosis. the other is that they say the doctor it was named after was a terrible person. i’ll take a look at the second one first.

hans asperger was a doctor in austria in the first half of the twentieth century who studied children with neurological disorders. no big surprise there, i suspect, given that one of them is named after him for being the first one to propose its existence. here’s where the problem comes, though. he wasn’t just a doctor. he was a nazi doctor. and he used his experiments and diagnoses to systematically privilege certain patients, often children of other nazis, while condemning those with similar divergent mental traits to death or torture. by the standards of the holocaust, what he did was unsurprising. by the standards of all modern medicine is supposed to stand for, his actions, like those of all doctors working for the nazis, are nothing short of disgusting.

that seems to jive well with what people are complaining about in terms of the diagnosis, right? well, no. not quite. john langdon down (the one down’s syndrome is named for) spent a significant portion of his career performing questionable and unscientific bleeding treatments on patients in his care. james parkinson (parkinson’s disease) was part of a plot to poison king george iii (admittedly not for nasty reasons as the king was standing in the way of equal rights for citizens but still not exactly the behavior one expects of a doctor). thomas hodgkin (hodgkin’s disease) was an ardent and outspoken supporter of the liberia project, a way to separate black people of african descent from whites and keep them locked in a single place, where they couldn’t mix with or (scandalously) breed with other races.

what’s my point? historical revisionism. we look at the past and think these people lived in a situation where their actions can be judged by modern standards. and we are free to do that, of course. but we must be very careful not to assume that the people we would like to respect from a century or more ago lived lives that we would consider worthy of that respect on closer examination. that is in no way an apology for the actions of asperger (or, for that matter, down, parkinson or hodgkin). i am happy to condemn these people as the hateful examples of humanity that they so obviously were. what i am not prepared to do is accept the hypocrisy that is in place where people discredit certain individuals for their actions while ignoring the terrible things done by others, just because they like the results. adolf hitler was a racist, violent monster who killed untold millions and propagated hatred that still lives generations later. winston churchill, too, was a racist, violent monster who killed untold millions and propagated hatred (a very similar white-supremacist, antisemitic, anti-asian hatred, in fact) that still lives to this day and is in many ways the guiding principle for british culture and society. let’s be highly critical of the horrible actions of people in the past. but let’s be complete about it.

so i would happily see people’s names stripped from medical diagnoses. not just the ones who were horrible, actually. i think it’s a horrible idea to name medical conditions after people. but if we’re going to do that for all the people whose actions were reprehensible and monstrous, let’s do it whole-heartedly and have some less-historically-loaded names across the board in medicine.

the other part that appears to be being propagated of late, though, is a bit more troubling — the notion that asperger’s is an artificial diagnosis. there are a few problems with this. one is that a vast number of people received this as their clinical diagnosis when the name was still being used. the other is that, whatever name we put on it, there is definitely something causing the symptoms and saying the disorder is fictitious denies those people a clear diagnosis, something that gives many people not just comfort but a way to continue their lives, strategies to cope, etc. i was a teen when i was given exactly this diagnosis. while i believe the classification is questionable at best and the name troubling, the fact that there was certainly a problem requiring a name is unmistakable. yes, certainly, it would be better to put another name on it. but much of the rhetoric around this topic has been more to deny people with such a diagnosis in their past the certainty of knowing how to identify themselves, denying them a community of support. i don’t think that’s the intent, at least not from within the community. but for many people this has been the effect.

leaving aside the question of what to call it, though, let’s look at the issue of diagnosis. specifically the diagnosis of autism.

“autism” is a poorly-understood series of neurological abnormalities that can be assumed to be, though not necessarily proved to be, genetic in origin, though almost certainly not hereditary. what does that mean? it means an autistic brain works differently from, though not necessarily either better or worse than, an average brain. while the word is thrown around far too much lately without context and its definition has been bent so far out of shape as to have almost no coherent meaning, an average neurological system can be called “neurotypical”. that’s not to say that there is a specific neurotypical brain or neurology that is possessed by individuals. it’s a range of norms, though, and the vast majority of people fall within a small deviation of that norm in various measures, giving it a reasonably-meaningful clinical definition.

autism is not the only way people can end up with a neurology different from the norm but it is probably the most common. this is important, though, as it is often seen as a binary — either you are autistic or neurotypical. that is absolutely not the case. many people who are not neurotypical are also not autistic. so any diagnostic situation that sets up diagnosis as simply occurring because proof the other is not the case is spurious at best and manipulative in most cases.

this brings us to the real problem, though. while i certainly have issues with “asperger’s” as a diagnosis, i have a much larger problem with people being diagnosed with “autism spectrum disorder”. why? because it’s not a spectrum. i will say that again just to be clear. there is no autism spectrum. it’s a horrible way to look at it. technically speaking, it’s not really a disorder, either. but that’s a difference without any real effect. it’s the fact that people see it as a spectrum that is the real issue. it leads to ideas like “you’re a little autistic” or “you’re more autistic than them”. this is both wrong and harmful.

let’s take a look at an obvious and perhaps silly, though meaningful example. pregnancy is an extremely variable condition. it begins and ends at reasonably predictable points but how it impacts the body while it is ongoing is both unpredictable and vastly divergent from one to another. some gain vast amounts of weight and have visibly-different bodies after a matter of five or six months while others barely show effects at all. some encounter myriad side-effects while others continue to full-term with the child having minimal impact on their daily lives. some have incredible difficulty in the delivery process while for others it is quick and relatively simple. having never been pregnant, i am no expert on how it feels from the inside and this is certainly not a judgment of those who have gone through the process. i imagine birth is extremely painful and much of pregnancy is terribly unpleasant. but my issue is that nobody is “a little pregnant”. if you have more severe effects on the body, people won’t say you’re more pregnant than someone else. and, for that matter, someone who goes through their pregnancy without it impacting their daily lives in a meaningful way from these effects is not described as being “high-functioning-pregnant”. the whole concept would be, as i said, silly.

this is what is done with autism, however. the notion of a spectrum was originally proposed to show that there are various symptoms and that not all autistics exhibit all of them. it went on to describe the idea that even within these symptoms there are vast degrees of variability of severity. the result is that autism presents in many different ways because of the limitless combinations possible of which characteristics and their severity. much like in the case of pregnancy, however, none of these things make a person more or less autistic or turn it into a spectrum.

symptoms of depression are myriad and unpredictably-combined, presenting in limitless patterns that often change daily. yet a diagnosis of “being on the depression spectrum” would be met with completely-justified derision and immediately exposed as meaningless. there are many varieties of cancer, usually denoted by type of growth and, more frequently, location (breast, lung, stomach, pancreas, etc). we do not, however, talk about people as being on the cancer spectrum, despite its variability in presentation and effect. like cancer, actually, autism is not a mammoth, overarching diagnosis. cancer certainly began that way, as a catch-all term for any mutational cellular growth. autism in much the same way began as a diagnosis for all non-neurotypical effects.

we know far more about how neurology works now, though. what was (and sadly still is) called a single thing truly needs to be redefined as a group of loosely-linked diagnoses under the umbrella term of autism.

the most common way, though no longer popular, to do this was by classifying people as high/low-functioning autistic. the problem with this is that it made it sound like those classified in the low category had a more severe problem and those in the high category were better people. we can call this systemic ableism or simply see it as an example of human self-classification in line with selfish and prejudicial motives, which i suspect is more accurate as a description.

there are very clearly several sets of common behavioral effects of autism, however. the variation is not random. it is, to a certain degree, predictable. for example, autistics who lack verbal communication also demonstrate certain traits like physical sensitivity variation, temperature control problems, cognitive processing deficiencies and eye-movement and eye-contact difficulties. some of these are shared with other autistics but they tend to exist predictably when someone is non-verbal. conversely, those whose symptoms appear far closer to what would be thought of as obsessive-compulsive disorder often have high mental processing in both detail and concentration while lacking social cue understanding. these, too, tend to come as a group. this is an extremely simplified version of this division and there are absolutely not only two groups of autistics but i believe it clearly demonstrates the problem with a single name or diagnosis. this is not to say that autism isn’t a thing. it’s just to say that it is several things and it would be useful if instead of there being only a blanket term (which is certainly useful), there were names for the more specific groups, too, allowing those who experience those particular effects to more easily receive treatment and find others whose lives may have been similar — finding those who suffer from a similar problem is extremely difficult within the autistic community unless your symptoms are the most common ones and you respond well to the most common treatments because subdivision is often vague at best and more frequently absent.

i would welcome a diagnostic system that looks much like that used for diabetes, where patients are classified simply with a type number. still definitely diabetic, a clear diagnosis with all that entails both positive and negative. but a specific subcategory leading to more effective grouping, treatment and community. i can see a potential future where we are classified and identify as “type 4 autistic” and that has a specific meaning.

so, yes. we definitely need to stop using the term “asperger’s”, though we need to make sure all people who have received that diagnosis accurately can still be classified as autistic and receive all the benefits both societally and emotionally that a clear and unambiguous diagnosis entails. more importantly, we need to stop using the phrase “autism spectrum” or the classification of “autism spectrum disorder” to denote non-neurotypicals. “autism” or “autistic” are perfectly fine with me and probably the best option. it might be useful to remember that this word itself has a somewhat troubled history, though. it symbolizes that autistics are self-only, outside society or culture (from auto, self, as in automatic, autoimmune, etc) and that’s a rather troubling stereotype that really only applies to a certain subsection of the autistic community.

all that being said, the purpose of this is mostly to share information and encourage people to be a little less exasperated (ok, not exasperated at all), performatively-shocked, mock-outraged and such about the use of “asperger’s” as a term. yes, it’s outdated. yes, it’s horrible. yes, he was a degenerate. but let’s put it in perspective and if we’re going to use these things as judgments of medical diagnoses that have vast impacts on people’s lives, let’s think it through and be coherent, complete and caring as we do it. if you’ve lived a huge portion of your life identifying in a particular way and someone tells you you’re identifying with a diagnosis that doesn’t exist, this could send you into a horrendous spiral of failing mental health. i wouldn’t want to be responsible for that, especially not by the casual sharing and reposting of things that sound great and are trending on social media.

let’s try to be a little better about our own histories and treat these subjects carefully. i don’t expect you (or anyone) to take what i have said and believe or accept it wholeheartedly. i’m not looking to engage in a discussion with you or anyone else on it. this is publication, not community-outreach. i am a writer coming from a place of my own experience, emotions and knowledge. what i would encourage is that before you speak or write about this, especially in public but even to your family and friends, make sure you familiarize yourself with the history of the topic, read some papers and studies, talk to people who have personally experienced diagnoses (or have had difficulty getting them, for that matter, which is all too frequently the case). in other words, i encourage you to speak about this. but please make sure your words come from a place not just of best intentions but awareness, not just awareness of what people are saying in the global megaphone of social media but actual scientific and medical professionals, not just one of them, many. engage with the subtlety and nuance and ongoing debate. if you’re going to wade into this topic, know that what you say could hurt many people around you, perhaps your friend, in many cases those who are autistic and either haven’t yet been diagnosed or simply don’t share their diagnosis.

as in all things, it’s better to be quiet until you can be kind and gentle. i’m not the one who will be hurt by potentially-careless words because i won’t be the one hearing them. but those you would like to protect may suffer from them. and i think we’d all like to avoid that.

thanks for reading.