Dani over at Autistic Academic recently posted Why This “High-Functioning” Autistic Really Wishes You’d Shut Up About High-Functioning Autistics. It’s a well reasoned and provocative post that might make you reconsider how you think and refer to differences in others.
I highly recommend giving the post a read but some of the best parts are in the follow-on comments. I’ll take some liberties and quote from one:
When my husband’s colleagues meet me for the first time, they’re reassured by the label “high-functioning.” They relax a bit. I’m not too weird – I can be reasoned with, unlike “those autistics.” But this also means they’re not paying attention to where they can communicate with me better, like in lowering the pitch and volume of their voices or reminding themselves to have patience with my utter lack of modulated eye contact. “High-functioning” is reassuring because it says to them “this person is NT enough that I don’t have to be reminded not everyone is of my neurotype.” But that puts the onus on me to uphold that charade, or pay the social price. And that’s not a fair distribution of labor.
I still haven’t reconciled how I feel about the labels but I’m very sympathetic with the post, especially the part about distribution of work. I wrote about this in Why I don’t do Christmas cards“:
If I operate at a level of minimal filtering so that I feel internally authentic, most others will feel uncomfortable because the interaction will be socially inappropriate. If I modify my responses to a greater degree, I can achieve socially acceptable results but I struggle with what feels to me like hypocrisy. In other words, it usually is not possible for both of us to be comfortable with my authenticity and yet we can’t be friends unless *you* feel I’m sincere.
The irony for me personally is that I spent the first 40+ years of my life perceived as a low-functioning neurotypical. Sure I have a high IQ, posses a facility for understanding complex technical systems with relative ease, and am conventionally successful (job, marriage, etc.). But I’m also socially awkward to the point of being unintentionally rude or offensive, have panic attacks brought on by impostor syndrome, am almost completely blind to body language, and an hour in a crowded place uses up all my spoons and mortgages a few from the next allotment.
As a kid I wasn’t picked for the team. Note I didn’t say “picked last” there. Later I was bullied to the point of ending up in the hospital on one occasion and almost killed on another. As an adult I frequently wasn’t picked for the (workplace) team either.
So, trust me, my initial reaction was overwhelmingly positive. It was a relief to be thought of as a high-functioning anything. High-functioning autistic? Yeah, I’ll take that. In a heartbeat. Whatever that label says to others, it helped me to make decisions and take actions based on very incomplete knowledge of autism.
The problem is that we acquire knowledge of anything from a fractal, top-down approach. We necessarily begin with very incomplete knowledge but we assemble a framework of labeled categories and run with it. As we learn more, we rearrange that knowledge structure, making gross adjustments. We then learn more and eventually fill in fine details. Sometimes we learn things that are paradigm changing and have to reassess everything from the high level assumptions all the way down to the fine details.
As an example of this process, when I want to go river rafting I know something about rivers – they have water, flow downhill, and many are sufficiently deep and fast for the activity planned. But I don’t know about the particular river unless I inquire as to its watersport classification. That tells me more but it doesn’t tell me what that river is like, and even if I’ve been there personally I haven’t experienced all of it or seen it on different days, for example before, during and after the Spring runoff. But the International Scale of River Difficulty rating gives me sufficient information to make a decision. The key to being able to make decisions and take actions is to use heuristics that we know don’t describe the whole but that capture enough detail to be useful.
Once we accept that all human knowledge is incomplete, we must devise a method by which we can function effectively with incomplete knowledge. For better or for worse we label because as humans it’s how our brains organize information from broad generic categories down to ever deeper levels of fractal complexity. We use heuristics to categorize at all of these levels in order to deal with the fact of always having incomplete knowledge. (And if we are honest with ourselves, the possibility of having incorrect knowledge.) Even extreme cases like conjoined twins have incomplete knowledge of each other.
Assuming we actually had complete knowledge of something or someone, we still can’t communicate that in a single bolus. It isn’t just about parsing the information internally, but also about how we communicate it to others and that follows the same top-down fractal process.
Shortcuts, in a sense, are all we actually have.
We can never get rid of them, only think deeply about the effects of the ones we choose to use or not.
Growing up in Klan country, I was indoctrinated with all sorts of labels that I eventually realized were harmful not merely to others, but to me as well. When I sought to purge myself of these I ended up temporarily with the common refrain “I’m not prejudiced, some of my best friends are black!” Eventually I realized the problems with that and worked to eliminate all racial references from how I routinely think about people. One of my former colleagues is also a former football player. Another is a former teacher. It really doesn’t matter what their ethnicities are since knowing about their previous vocations tells you much more about them.
Both of us still have incomplete knowledge but my introduction of those people to you starts at the highest levels of the fractal tree and works its way down to finer grained knowledge. Depending on your interests you might be drawn more to the football player or the teacher. When you ask about one or the other of them you take action based on incomplete knowledge.
I’m guessing Dani’s husband uses the high-functioning label as part of this walk down the fractal tree. We can’t introduce the topic of autism without having a path to walk from the upper-most fractal layers down to the fine detail, one layer at a time. It is jarring to attempt that by skipping several layers, and possibly detrimental to further communications.
That is, in fact, one of the primary ways in which we autistics are socially awkward: we do not tailor the level of information to the audience. When the other person wants the executive summary, we go off on a 9-volume treatise. On trains. Or Star Trek. Or birds. You name it, we think you want COMPLETE KNOWLEDGE OF THE SUBJECT NOW, when of course you don’t.
So what’s to do? Sometimes we have to abandon specific labels because they are based on incorrect information. Other times the labels are so incomplete as to be useless for making decisions or taking action. They aren’t wrong, just not useful. Sometimes we abandon labels because they are intentionally deceptive, like when a marketer names a scent “ocean breeze” and it’s really just wax and chemistry that vaguely smells of salt and decaying seaweed. That label is more about what is evoked in your mind than the reality of the experience.
Which, I believe is the heart of Dani’s objection. The qualification of “high” does not exist without the corresponding “low.” Neither tells you what you need to know about the person to which they are applied and in this case the implied “low-functioning” autistics aren’t even part of the conversation. The term assigns a measure of human worth to them, then subjects them to a bit of taxation without representation. Isn’t that supposed to be something we don’t like? At least here in the USA where I live?
The “high-functioning” autistic doesn’t fare well in the usage either. As Dani notes, it’s the top of a scale that, at least in this level of the fractal knowledge tree, is perceived to not overlap with the lowest functioning neurotypical. Well, that pretty much sucks for all involved. Autistic isn’t “less,” but rather “different.” Sure, there are those among us whose autism is functionally crippling. Go to any nursing home and you’ll find people whose age is functionally crippling. Guess what, if we are lucky enough to live that long and not die of infectious disease or trauma, all of us are eventually non-verbal and need assistance with daily activities. When that’s you, how do you hope people will treat you? With compassion and dignity? Or as something less than fully human?
Unfortunately we can abandon specific labels but we can’t abandon labeling and we can’t rappel down the fractal tree, skipping many layers at a time but expecting to be understood nonetheless. Maybe someday the label “autistic” will convey sufficient detail at the top of the fractal learning tree that it doesn’t need a qualifier. Maybe we will come up with something better. I know Dani will be thinking about it and thanks to the blog post, so will I. But I hope Dani will forgive me if I keep using “high-functioning,” perhaps a bit reluctantly, until we have that new label.
By the way, the answer to the question in the title is no. A “functioning autistic” implies a “non-functioning” autistic which is worse than what we have now.
I’m sympathetic to Dani’s stance but I don’t know what to do about it yet. Except to bat it around among people who care enough to give the matter serious consideration. If you got this far, I’m thinking that includes you.What are your thoughts? Where do you stand on the functional labels and why?