Trigger warning: long read, anger, suicidality, ABA, trauma, functioning labels
This pattern: adaptive skill -> “intelligent” -> high-functioning. wtf.
Further, this pattern: need for support -> “lack” -> low-functioning. Again: wtf.
First off: it’s ableist. That’s a given. Functioning labels, intelligence and correlating adaptability to both (and its respective presumed opposites) are *all* flawed concepts.
That said, I’d like to talk about how this makes no sense. Not just because functioning labels are ableist, but how the entire pattern doesn’t make any sense.
A *lot* of being viewed as high-functioning is about masking, and possibly having some particular set of skills or talents that are viewed as “humanizing” (and under capitalism, valuable). I can do both (even if it’s sending me careening towards a meltdown while I do it), up to a point — then things fall apart. So, rhetorically speaking: what does that make me? It is virtually impossible to memorize every possible social interaction; even if some hypothetical person did so, new ones emerge regularly, if not constantly. No amount of scanning a database of situations and scripted responses, and affective empathy (if needed) can fix that. It’s as if those of us who get viewed as “high functioning” (or in some mixed state of high and low functioning, if someone is bothering to pay attention) are the opposite of the “puzzle piece” metaphor; instead of being a neurotypical person trapped inside an autistic shell, we’re autistic people trapped in a learned/assimilated neurotypical one, to varying degrees.
A huge part of this is due to viewing typed or spoken communication as a key marker of ability and intelligence, if not proof of intelligence itself. When I’m non-speaking, does my ability shift? When I melt down? When I’m non-compliant? Is an IQ test an indicator of anything at all? (If you answer is “yes”, consider: even the official WAIS site encourages people to study in advance for testing. So then, what is being tested? If your answer is speed of response as an indicator of intelligence, perhaps consider that this concept is also flawed and ableist.) Also, the lived experience of having a skill or talent in society is predicated on a complex set of social skills, and it’s rare for accommodations to be made based entirely on that skill or talent, especially if you’re marginalized or oppressed. <sarcasm> So much for talent being mapped to functionality with the inference of social acceptance and inclusion! </sarcasm>
That said, there’s also the problem of viewing “low functioning” as lack rather than difference, of equating challenges and the need for support through the lens of intelligence, if not correlating lack of speech to lack of intelligence to lack of capability. Everything from the rather condescending ways people approach facilitated communication on an individual basis, without allowing for context, training or the person’s ability to type independently, to the ways that exhibiting high-functioning traits is equated with being high functioning at all times (or for that matter, with “not really being autistic”) are rooted in biased assumptions about functionality, both “high” and “low”.
Here’s a deeper problem that I see, especially for autistic youth: either through adversives or positive reinforcement, ABA presumes making an allistic child out of an autistic one. This alone is abuse, but on top of it, there’s a presumption that you’ll ditch that “fake child” (the autistic one) and become the real one (the made-up allistic one) that was buried under a pile of broken puzzle pieces. It’s very abuser-as-false-savior-like, as a “therapeutic” approach.
The problem with this is that it’s a lie. The real child is the autistic one, (TW: ABA, coercion, violence) the rest is forced and/or bribed compliance. Further, if you remember who you actually are in adolescence and adulthood, this creates a tension between your real self and the fake allistic one — which is masking at its most harmful. It can lead to forgetting who you are altogether, so you know that your mask isn’t real, but you can’t get back to who you are before you masked, either. This was coming up a lot on the #takethemaskoff campaign: autistic people kept saying “I’ve been masking for so long, I don’t even know who am anymore.” I know what it feels like to start to forget. It’s like someone is murdering you, and you get to watch. There’s masking out of necessity and survival, as well as masking to get your wants and needs met — then there’s masking that can be overcome, safely, or that could if someone hadn’t been subjected to years of forced compliance. (These categories aren’t necessarily mutually exclusive, either.) In my opinion this is part of why there’s a link between suicidality and masking.
There’s a variety of ways that ABA and directly ABA-like things are foisted upon autistics. I know that ABA as a practice has been around since the mid-1960s, and the first assessment questionnaires have been around since then as well; my parents used behavioralist techniques that map to ABA more than closely enough to parallel ABA itself. Why that is, I don’t know (although I have my guesses), all I know is that it was traumatizing as fuck, and once the “compliance protocol” was established, it *never* went way. Not just in childhood, period. I have had to unlearn “people tell you what to do, you do it”. It’s a life skills anti-pattern.
What helped me find modes of expression and learning in the school system was *NOT* being assessed, and the more negative aspects of what my parents did at home. What did were teachers that encouraged students to find their own ways of learning and communicating, instead of trying to force us into a box. I thrived under these teachers, and didn’t otherwise. (It’s probably important to point out here that I was frequently what now gets labeled as combative, non-compliant or passive otherwise.) By high school, I learned how to coast, until I was forced out for other reasons. This wasn’t just educational, it was inter-personal as well. I was literally rescued from some personal hell, assessment included, twice — only to fall back into hell until I left the school system altogether, and I have no intentions of forgetting that.
Perhaps what is flawed here is both the entire concept of intelligence in the first place, as a presumed indicator of cognition as well as ability, if not sentience — as well as the idea of “functioning” being a fixed state, that can only be deviated from by regression or “cure”. Both of these assumptions are dangerously ableist, if not eugenicist in their world-views. This is the sort of never-ending array of conundrums that Melanie Yergeau talks about — the frequent assumption is that someone is either too autistic or not autistic enough to self-advocate. This basically is a toxic worldview, and deserves to be challenged as a pernicious threat to our well-being and survival. Self-advocacy is communication, and non-compliance is a social skill, regardless of how we have been labeled, how we communicate and express ourselves, and what levels of support we need.