Last week, I read the beginnings of an online conversation in the comments on Mama Be Good’s post Good Trouble. The conversation took place between a parent of an autistic child and an autistic self advocate. One had used the terms ‘high-functioning’ and ‘low-functioning’ and the other had taken issue with the language and what she asserted are its connotations.
I talk an awful lot here about the implications of language and how the words that we use affect those on the spectrum. Broad-stroke generalizations like these are a perfect example. Whether we realize it or not, ‘high-functioning’ and ‘low-functioning’ have the power to validate the assumptions that we make – and allow society to make – regarding both the level of need and the level of ability among people on the spectrum.
I’ll start by saying that I whole-heatedly agree that the categorization of autisms (< — not a typo) along arbitrary lines based upon a binary system that only allows for the two possibilities of ‘high-functioning’ or ‘low-functioning’ is completely artificial and undoubtedly destructive.
There are a million reasons why this language is injurious, but one argument that was put forth in this case is that it creates the false perception that those who fall into this so-called “high-functioning” category need less support then their “lower-functioning” peers.
This isn’t the first time that I’ve heard this argument, but it gave me pause. Because I would argue that to some degree, at least as the terms are typically defined (I’ll get back to this shortly) they do. Or at least radically different support. (In a subsequent comment on Brenda’s post, a person who identified themselves as an autistic self-advocate said something similar.)
A person with some – any – accessible method of communicating with those around him will necessarily need a different level of support than those without. A person with no awareness of or respect for danger, will, by definition need more intensive care than one who is able to understand and avoid it. A person who can cook and clean, who can use the toilet and maintain a safe level of personal hygiene will have very different needs than one who cannot.
But that certainly doesn’t mean that they ALL don’t need support.
And then there’s this issue of how to define “high-functioning” and “low-functioning”? What do those terms actually mean?
I’d submit that they mean a whole lot less than people think they do.
Autism does not lend itself to a neat, linear model. Hell, autism doesn’t lend itself to a neat anything. People often ask me where Brooke “falls on the autism spectrum”. I understand that the question is born of a false but comforting perception that there is some kind of skill vs challenge hierarchy – a pretty, brightly colored pyramid perhaps – upon which we can place equally brightly colored thumbtacks to denote ranking of severity and prominence of gifts.
Of course pretty colored pyramids are useless (unless it’s 1978 and we’re discussing food. ) We’re not talking about food. We’re talking about living, breathing, constantly evolving, delightfully complex human beings.
So I guess the question is – as it always is – what do we do?
Well, I’d say that as with most things, we attack the problem from both sides. We work on changing the language that reinforces the bifurcated model of autism (not using it is a great way to start) and at the same time we educate the general public on why support and accommodation are vital across (around?) the spectrum. Changing language is a process. It’s not a quick fix. Ever. So we need another strategy – something that we can do concurrently to ensure that while folks continue to give into the natural tendency to categorize, no one winds up out in the cold.
In 2009, I wrote a post called Brooke Order. In that post, I said the following. I apologize that it largely repeats what I’ve said above, but I’m loathe to hack it up.
… but damn it all, here was my kid playing. And playing BIG. This was elaborate, dramatic, pretend play. Characters interacting with one another as part of a grand scene. Voices! Different, distinct, appropriate voices for each character! A sentence ran through my head.
She’s catching up!
Followed by another one.
“This is a disorder, Jess. Not a delay.”
“Her development will not ‘catch up’, per se; it will simply happen in a different order.”
[Those words were spoken by the] first specialist we ever saw. The speech therapist who directed us to the autism clinic – Do not pass Go, she had said. Do not collect $200. Just get help. The one who spent twenty minutes with our baby and knew. Just knew. And she was right about so many things. Not a delay; a disorder. A different order.
I’ve come to dislike dis-order. I prefer Brooke-order. She shows us time and again that she will come to it, whatever ‘it’ is when she is good and ready. I guess our humble job is simply to make sure she’s armed and ready when that time comes.
In response to comments on that post, I wrote the following:
you know, this whole idea of breaking apart the ‘delay’ model meant a much bigger paradigm shift for me. when those words sunk in (they were in response to my ignorant question, ‘so when will her speech catch up’?’) they changed the whole visual for me. they did away with the entire idea of linear development. so, to my mind – there is no finish line. there are no lines at all.
people often ask me which ‘end of the spectrum’ brooke is on. i try to explain that to me, the spectrum is more of a three-dimensional sphere. some people have skills A thru D and challenges F thru L. some have strengths M, J and Q and some have deficits P, R and V. it’s round, it’s malleable, it’s unpredictable. and so it is with development.
i picture skills and tools and milestones all mixed together inside the globe. when they’re ready, armed with whatever tools we can give them from the outside our kids will grab them and make them their own. by definition, though, the globe has no ‘end’ – no finish line as it were. but i think in some ways, that’s the way it should be. hell, i’d hate to think that any of us was ‘done’ developing. i’m sure not and i’m 28. (or not)
I guess the point of all of this for me is that we need to ensure that society at large understands that just because an autistic individual has a certain set of abilities it can never be automatically assumed that they have others. Perception of competence in one area can not negate the reality that there may be serious challenges in others.
Conversely, and no less importantly, it can never be assumed that because an individual has certain challenges, they don’t also have myriad strengths and abilities. (When in doubt, click HERE.)
People who are severely impacted by autism need and deserve our support. They face unfathomable challenges and misconceptions about who they are and what they can do every day.
People who may appear to be more mildly impacted by autism need and deserve our support. They face unfathomable challenges and misconceptions about who they are and what they can do every day.
And just because it may be easier for those of us looking from the outside in to build pretty, brightly colored pyramids upon which to categorize them, it’s no longer 1978 and we’re not talking about food.