You know what I’m sick and tired of? Functioning labels, and people worshipping them as though they’re the end-all be-all of how autistic people actually interact with the world.
We’re considered “high-functioning.” We’ve got a high tested IQ. We were expected to be able to engage in independent living after we graduated from high school. But then again, there are some tasks of daily living that we struggle with, and I wish we could get help with them. We can’t cook as often as we want to during the academic year. (It’s been easier for us over summer break, but then again, we don’t have homework.) But because we’re “high-functioning,” we can’t, at least not from official sources in our state. A lot of agencies and medical specialists define “functioning level” on IQ test scores, which are really questionable once you look at the matter more closely.
Thing is, IQ scores don’t determine how you can deal with activities of daily living. They can’t! Just because you know how to arrange blocks in a certain way, answer a bunch of math problems, match vocabulary words up with their meanings, or choose the correct pattern on a multiple-choice test, doesn’t mean that you It just means that you can take a particular set of tests well. I don’t even think that it measures intelligence, and I’m tired of government agencies using an IQ score as the sole (or primary) determiner of functioning. Also, IQ scores are known to produce “false negatives” in some autistic people: they may be considered “intellectually disabled,” simply because their brain type isn’t compatible with the structure of typical IQ tests. Amy Sequenzia, an autistic activist, poet, and self-advocate, mentions that she was given an IQ of 25, which is considered severe intellectual disability. And yet she’s able to express herself in a way that someone with an IQ of 25 should theoretically not be able to do. People who have severe ID and actually fit the profile struggle with both oral and written communication. They have a hard time doing most everyday things required of people. Sequenzia is non-speaking and needs assistance with tasks of daily living, but she can also understand and interpret abstract concepts, write about her experiences, and look at her experience in a metacognitive way. These are all skills that go against the definition of intellectual disability. These tests can also produce false positives; there are also people with “gifted” IQs that struggle to manage daily-living tasks (Hi!). They may be able to solve complex intellectual problems, conduct innovative scientific studies, or write beautiful essays about the human condition, but laundry, cleaning, dressing oneself, and time management might be incredibly difficult for them. But because they’re seen as “too intelligent” to need services, they’re left behind. We haven’t even tried accessing support services because I know we’re going to be turned away “because your IQ is too high.”
What makes the matter worse is autistic people who rank their own worth based on IQ or “functioning labels.” I think many of you know the kind: people who see themselves as being worth more because they have an IQ of 150 and are brilliant at a “hard” science, unlike those ~other~ autistics who have an intellectual disability and struggle more with certain tasks of daily living. Sorry to say, it doesn’t work that way. There are people who might have an “average” IQ score and be great at tasks that someone with a higher score might not. It happens all the time. There are folks with IQs of 170 who have a really hard time keeping their house up and managing stuff like bills, while people with scores of 100 can do it just fine. And it’s really ableist to claim that someone’s worth more because their IQ is higher, or that they’re worth less because it’s lower. By that logic, people like the Unabomber and the Boston Bombing Brothers must be WONDERFUL, right? I don’t think so. People’s worth shouldn’t be determined based on their functioning label or IQ. That just plays into that eugenics bullshit that still hasn’t been completely excised from disability discourse.
There are plenty of folks with physical disabilities and high IQs who qualify for services. Why doesn’t the same principle apply to people with developmental disabilities that affect other aspects of their lives other than their ability to do well on standardized tests that may or may not be accurate predictors of their abilities? And why are we using functioning labels/IQs as a means to determine how much we value people anyway?