I find it very interesting by the way that failure to learn your language is seen as a deficit, but failure to learn my language is seen as so natural that people like me are officially described as mysterious and puzzling rather than anyone admitting that it is themselves who are confused, not autistic people or other cognitively disabled people who are inherently confusing. – My Language by Amanda Baggs
It comes with the look halfway between perplexed and pitying. Because how could I not get it? And yet how could I, supposedly lacking Theory of Mind and understanding of symbolic language? It comes with an edge to the voice and the slightest roll of the eye. The puzzle piece, she explains, slowly, pointedly, as to an errant child, stands for the mystery of autism! Not autistic people, but how we still don’t know what causes it!
And because it stands for what causes me to be me, well, obviously I shouldn’t be offended. I try to explain that autism is not, cannot be, separate from the person, using the points Jim Sinclair outlined here. But then I look again. On her lapel is the most famous of all puzzle pieces. Of course I’ve seen it thousands of times, but I have to check, just in case I’ve been mistaken.
Nope, it’s still the same. A puzzle piece shape in bright blue with legs, arms, and a shrunken little head. I’m pretty sure this is a person. Am I the only one who sees it? And while the Autism Speaks logo might not be the original autism puzzle piece, it is certainly the most recognizable. It represents a person, and despite my history of pareidolia there is no way you are going to convince me otherwise.
Autistic people have been writing about the offensive nature of the puzzle piece symbol for years. This 2008 post by C.S. Wyatt is a good example:
Ribbons and wristbands are a fairly poor way to indicate interest in a cause. When there is a dedicated color of ribbon or wristband for every issue or cause, none of the rainbow matters. A chest full of ribbons, aligned in some proto-military fashion, seems ludicrous.
So, one more ribbon should matter. But it does.
The Autism Awareness campaign uses either a puzzle-piece pattern or a tie-dye pattern with purple dominant. For some reason, these do bother me more than the dozens (hundreds?) of ribbons we are supposed to associate with causes.
Autistic individuals are puzzles? They are distorted, psychedelic minds? Exactly what is the message? Not that all people aren’t puzzles, but to think one group is any more puzzling is a curious claim. How does this promote understanding? The claim that we are all part of the greater puzzle… no, a puzzle is a mystery. The message to me that autism and autistic people are strange, mysterious.
I wish there were other symbols, less reductive symbols, for autism awareness. Puzzle pieces are simply offensive.
C.S. Wyatt blogs at The Autistic Me. Read more here.
It seems likely that everyone has some concept or situation he or she finds puzzling. I find statistics difficult, but that doesn’t mean that objectively, statistics don’t make sense. The fault lies with my comprehension, not with statistics. This 2010 post by Rachel Cohen-Rottenberg discusses the problem with those who attempt to portray autism as intrinsically puzzling. Theory of Mind, anyone?
When I read blogs by the parents of autistic children, I often happen across the puzzle metaphor. It finds its way into statements such as “My autistic daughter is such a puzzle” or “We’re still putting together the pieces of the puzzle that is my son.” I’ve always had a visceral response to the puzzle image to describe autism and autistic people, especially when used in the puzzle-piece logo of the Organization-That-Shall-Not-Be-Named. It’s so offensive on a gut level that I’m having difficulty even beginning to write about it.
A puzzle suggests the idea that there might be some pieces missing. Of course, such an idea is anathema to me, when applied to any person on the planet. The only way in which you could look at a person and see pieces missing is if you begin with a preconceived notion of what a person is supposed to look like. If the person doesn’t fit that preconceived picture in your mind, then you see all kinds of gaps. But if you see the person for himself or herself, and accept the person as a given, without reference to an outside standard, then the picture becomes whole. The person is simply a person, on his or her own terms—nothing more and nothing less.
If you begin with an idea of “normal” that says that a person should be able to speak by the age of two like “normal” children, enjoy the same kinds of activities as “normal” adults, and socialize in a “normal” fashion, you’ve got a seriously complex, preconceived image of what it means to be a whole person. It’s nearly impossible that any atypical person could even begin to approach that image of normal. When we don’t, some of us are told that we’ve got pieces missing. Autistic people are told that we lack empathy, theory of mind, central coherence, and the ability to live as social beings—which, by the by, is all complete and utter nonsense, just in case you were wondering.
So who gets to decide what picture is normal? Other people who have the privilege of defining themselves as normal, that’s who. It’s a nearly invisible privilege for the most part, because it’s everywhere. It’s taken me a long time to see it and, ironically enough, I’ve begun to see it by virtue of what is missing from the language of many of the non-autistic people who talk about us.
Two words are missing from the statement “My autistic daughter is such a puzzle”—two little words that would change that sentence from an expression of privilege to an expression of a personal experience. And those two little words are to me. If someone were to write, “My daughter is such a puzzle to me,” then we’d be getting somewhere. All it takes is the inclusion of the personal pronoun. Of course, there is still that little issue of the puzzle metaphor, which runs the risk of portraying the child as a series of pieces, but at least the source of the fragmented perception would stay where it belongs: in the eye of the beholder. The speaker would be taking responsibility for describing his or her own limited perception rather than an objective fact.
Another example of this limited perception appeared on a recent blog by a parent who said that her autistic child is afraid of things “that just aren’t scary.” She didn’t say “that just aren’t scary to me.” She said, “that just aren’t scary,” as though there were an objective measure of what’s scary. These words imply that somewhere in the far reaches of the universe, there is some ideal called scary, we all know what it is and, if we’re scared of things that don’t measure up to that ideal of scary, something is terribly wrong. Now, I have always assumed that being frightened was a subjective experience, and that an image or a situation that frightened one person might not frighten another. I have never assumed that what went on in my own mind was exactly the same as what went on in other people’s minds. Far from it.
But wait a minute. I remember reading somewhere that being able to understand that other people think differently than I do is called having Theory of Mind (ToM). So, miracle of miracles, I actually have ToM, autistic though I am! And when a non-autistic person can’t imagine why an autistic person might be afraid of something, that non-autistic person seems to lack ToM. I see evidence that non-autistic people lack ToM regarding autistic people all the time. In fact, I see it in the work of “experts” on autism, and yet rarely does anyone call them on it. Usually, the ones who do the calling out are autistic people like me, who by definition don’t understand ToM, so we’re dismissed before we begin.
And once we’re dismissed, people can own the discourse about us and say just about anything they want. Consider the following:
A non-autistic person says that the world of an autistic person is a puzzle. That statement is taken as objective truth by most non-autistic people. In fact, it is irrefutable evidence that the person speaking is “normal” and that the person being spoken of has a “disorder.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Yes, you’re right. Poor thing. He certainly is a puzzle!”
An autistic person says that the world of neurotypical people is a puzzle. That statement is taken as a purely subjective perception by most non-autistic people. In fact, it is irrefutable evidence that the person speaking has a “disorder” and that the people being spoken of are “normal.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Poor thing. He’s so impaired. He just doesn’t understand us.”
Could the arbitrary nature of privilege be any clearer when one set of people has “understanding” when they don’t understand, and the other set of people is “impaired” when they don’t understand? Maybe it’s that I’m autistic, or a born democrat, or hopelessly addicted to fairness, but I find this kind of imbalance deeply disturbing and painfully unjust.
So what do I do when I meet the puzzle metaphor? Well, obviously, I write about it. And then, I create signs like this one:
Because I am a whole person, not a collection of jigsaw pieces.
Rachel blogs at Journeys with Autism. Read more here.