On Puzzles, Privilege, and Missing Pronouns: From Journeys with Autism

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.

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9 thoughts on “On Puzzles, Privilege, and Missing Pronouns: From Journeys with Autism

  1. Thanks for writing this. It is encouraging for me. I relate too well to this feeling.

  2. One of my favorites was a teacher in an autistic classroom that said of her kids, there was a normal kid, “screaming to get out.” Jesus…I’m glad she never taught my kid!

  3. purpleaspie says:

    I’ve been trying to convince a member of the autism group that I run that the puzzle piece is offensive. He keeps trying to convince me that it means, “We’re all connected like pieces in a puzzle!” I keep telling him that that is not the way the you-know-what organization intended it to mean.

  4. I appreciate your perspective. I am not sure I entirely agree. I think many people are “puzzles” or “puzzling”. Some autistic people/people with autism are puzzles, indeed. Some NT people are definitely puzzles. I agree that it is not particulary approprite to use as a generalization for a “defined” group (ie. NT or ASD or OCD or….). To me, though, a puzzle does not necessarily suggest “missing pieces”; rather, it may infer complexities or a challenge to figure out. Thanks for your insightful perspective – it has definitely made me think to use more care in my choice of adjectives.

  5. Froggzzz says:

    I love your insight, it’s nice to “see” things from “inside”. I just have to ask or add, is there a reason you refer to dinnertime with Autism an autistic person? One if my pet peeves is when someone says things like “I have an autistic child”, I always want to rewrite it and say “I have a child who has (or experiences) autism”, because they are a child or person first, and secondly they happen to experience Autism. In reference to the puzzle.. I have never thought of it representing missing pieces, but I see what you are trying to Sat. For myself, I instead, saw the puzzle piece representing that autism itself is a puzzle. We as parents, caregivers, educators, etc. are trying to figure out how to put the pieces together so the person experiencing Autism can rise to their potential. The puzzle to me is deciphering why something that is “not scary”, is scary to them, why a behavior happens in the same location, or at the same time of day, and the list goes on, that is the puzzling thing for me and I am always trying to work on the puzzle. How can I take what is being shown, demonstrated, even directed at me and figure out how the puzzle fits together, can I help them turn that piece so it fits (makes sense to them), or can I alter the situation so that it can be avoided all together. I remember one child I worked with who had behavior “episodes” that happened in the bathroom at school. I decided one day, to go into the bathroom and sit with my eyes closed and ears open. I heard.water dripping, I heard noises from the gymnasium next to the restroom, I heard and saw a flicker with the lights overhead. We decided to try using a different bathroom, ( this was before I know about them, but now I would try noise canceling headphones). Guess what? No more “episodes”in the bathroom. To me, this represented the fact that I had helped to figure out one piece of the puzzle.

    • Froggzzz says:

      Sorry for the typos I wrote my response on my phone.. Dinnertime should be someone… if of etc. :-)

    • bev says:

      Froggzzz,
      The author of this post is autistic. Many of us prefer this term to “person with autism.” Autism is permanent and an integral part of our identity. Autism is not a disease or other terrible thing that needs to be removed. Just as you wouldn’t say “a person with femaleness,” it is not necessary to demote our neurology to something less than central to our experiences. I am glad that you were able to figure out the sensory issues leading to the “episodes,” but to me this does not indicate that the “behaviors” were somehow part of a puzzle before you understood them. They were things you didn’t understand. The autistic person involved understood it the whole time. Your approach to the situation was great. I wish more people would take the time to think about what might be causing us pain before labeling “behaviors” as problematic or inappropriate. Thinking of autism as a puzzle might promote the sort of detective work you describe, but at the cost of objectifying the autistic person. Rather than thinking of that person as the object of an investigation, why not accept her as a full partner who is doing her part to tell and show you where the problem is? This might seem like nitpicking to some, but this subtle shift in perception matters very much when you are talking about a group of people who have been often studied and rarely consulted as the experts on their own lives. Thanks for your comments.

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