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.
© 2010 by Rachel Cohen-Rottenberg
first, i need to say that, before reading this, i hadn’t realized how beat-down i’ve felt about this issue.
it wasn’t very long ago that i was a very vocal defender of the importance of being aware of the subjective nature of experience. i argued, i yelled, i generally made an even bigger pain in the ass of myself. socially speaking.
i suppose that many times the two little words are implied, but jeez, implied pisses me off! implied meaning is nothing of the sort, simply an unspoken agreement between supposedly like minded people.
i know it can be tiring for those NT people in our lives, constantly having to explain things that ‘normal’ people assume implicitly. well, you know what? that lack of clarity is not a good thing. it saves time at the expense of clarity, accuracy and holy crap, even at the expense of understanding! the differences between implicit and explicit are a frequent topic for, ahem, discussion, in our household. our loved ones may love us, but they’re also victims to assumption. hey, why not? when the only people who disagree with you are autistic weirdos, why would you ever change?
grrrr. thanks for reminding me to be fired up, and thanks for listening to my rant
This is the second post I’ve read on this topic this week, and it’s very interesting to me. When I the first one, the author said something like, “why is it when we don’t understand someone’s reaction it’s because we lack empathy, but when an NT doesn’t understand our reaction it’s NOT because they lack empathy?” I read that and said , “Yeah! Why is that?” On a purely logical level, and in a Utopian society, it would be that “normal” wouldn’t exist and we would all try to reach out and understand each other. I can understand it from that perspective.
But I’m raising two kids on the spectrum (in addition to being one), and I gotta say, as much as it sucks, they get to define normal because there are substantially more of them. And my personal experience has shown me, that when my kids get out in the world, the “invisibility” of their conditions will mean that they get little to no slack form the rest of the world. So I have to teach them to self-advocate, and if not behave like an NT, at least try to make it so they can understand where NTs are coming from and what they’re expecting.
This doesn’t have much to do with your post, really. To be honest, I’ve never given any thought to the puzzle piece thing. I always thought it was that we were looking for the piece that would complete our understanding. Not that auties are incomplete, but that the rest of the world’s understanding of auties was. I don’t know. You sure do make me think, Rachel. I like that.
I don’t necessarily feel “irritated” by the puzzle thing but I do recognise it as an issue. I’ve only ever used it once on my web presence (see here: https://sites.google.com/site/gavinbollard/about-aspergers) and I struggled with using it at the time.
I liked the idea of having lots of colours but didn’t want it to seem like something was missing. After all, I put together puzzles at home where I choose the pieces which fit best and when they’re finished they look fantastic. Of course, not all puzzles get finished. Some are too hard. Sometimes we get tired and give up. That’s not a problem with the puzzle – it’s a problem with the person doing the puzzle. Maybe they need to get some help with their puzzle. Maybe the puzzle doesn’t need to be made – it might be better to simply leave it as it is.
I decided that “everyone is like a puzzle”. Not just people on the spectrum. We put people with the things that make the best picture; family, friends, special needs teachers etc. Sometimes it takes us a while to find where the right pieces go. Sometimes we think we’ve lost a bit but usually we find that we were just looking in the wrong spot. Sometimes you can even force a bit into the puzzle. You can make it look right at the time but it will only cause problems further down the track. If you can’t find the right bit, work on a different piece of the puzzle and eventually you’ll find it – if it really needs to be found.
In the end, you’ll notice that the banner I used has no pieces missing.
I guess it all depends on your point of view.
YES!!! I always enjoy your posts, and this one is definitely one of my favorites. I loathe the puzzle metaphor. My children have no missing pieces, and it frustrates me to no end that people would suggest that they do. I think this metaphor serves to dehumanize individuals with autism even further than the stereotypes already do.
I AM a puzzle, I see myself as a puzzle, with lots of pieces missing, and at some places totally mixed up. In my mind, they mean all the places where I don’t understand myself, where things just don’t make sense even for myself. And, honestly, if I don’t understand myself at all in many respects, how can I hope anyone else will? When I found out I am an aspie, a whole handful of loose pieces suddenly found their slots, big sections of the puzzle suddenly started to make sense – only to become painfully clear that it is a disturbing puzzle I have on my hand. And many many areas are still a blur, a blank, or a mess. I am a puzzle and that’s the way it is. I am not offended if people think I have bits and pieces missing. I do. What I don’t like is being told I have no feelings and compassion – because I have too many.
This is a very important post (to me!).
The “to me” appendage is so crucial for virtually all “subjective” communication — and especially when the speaker wants his/her statement to appear to be objective.
I first learned this when I was working with my Dad close to 40 years ago. He would come to my workspace with a request for me to to do something, which was usually either preceded or followed by “This is important.” After one of these times, I commented to my co-worker, “How does he know if this is important to me? I’ll grant that it’s important to him, but does that mean I should drop what I’m doing (which I thought was important, and which may have been important to my Dad the last time he came into the room) to do what’s REALLY important?”
Of course, this whole discussion is another example of the mis-use (or abuse) of personal power.
In the book “Stranger in a Strange Land” there were people known as “Fair Witnesses” who were trained to be completely objective. (The example was if you asked “what color is that file cabinet” the response would be “gray on this side” because they couldn’t report on what they couldn’t actually see.) Their role was to be like a human video recorder, to be able to state clearly what had transpired between people. Interesting idea, and I don’t think the Fair Witnesses would have seen anyone as a puzzle — they would simply say what they objectively observed about the person, and NOT in the subjective terms of majority or minority culture.
I prefer to think of myself as a mystery–somehow the word puzzle implies that one would only be interesting to someone who enjoys a specific sort of challenge. And if there is also the implication that there are puzzle pieces missing, well, that further implies that attempting to solve the puzzle is futile. It seems more accurate to say that we are each a mystery. And since I believe that God has created each of us and we’re His children, we are each sacred mysteries. Now, that has some dignity inherent in it. And who doesn’t love a mystery?
Wow! This type of post gets my jucies flowing. I am 54, I was diagnosed in December 2009. Before that time I remember hearing PSA’s all the time from the puzzle people bergade and was angered each time I heard them because it came across to me that they were trying to stigmatize a disability to raise money from people whose emotions they had jacked with their bogus statistics. Forget puzzle though, all the attention given to autism is just window dressing to make society feel good. The problem is that the community of people with autism is being bullied by a group of people that understand that the bullied need much higher social skills to redeem a bully encounter than the bully himself does.
I love this post! It’s one of your very best (which is saying a lot given the quality of your posts). I agree with Gavin that all people are puzzles in that we are all unique and need to be understood on our own terms. Saying all auties, and only auties, are puzzles is like saying “all Orientals are inscrutable” (sic).
Thanks so much for writing this, Rachel, this is an important topic.
Have to say this is the main reason I don’t interract with many
parenting discussions (even tho my son is also AS). Although
it needs to be addressed in those very places.
Interesting that you brought up this topic. Indeed, I have been a thorn in my mother’s side all my life. A puzzle is a polite way of putting it. But while many people, Autists or NTs alike, view us as ‘puzzles with pieces missing’, I have found a different way of seeing myself. Recent research for my thesis on the sensory and cognitive idiosyncrasies in AS and how these influence and affect the artistic process, has led me to view myself in a new way. Weak central coherence is not a ‘weakness’ but rather merely an innate intuitive preference for localised focused detail, a bias and not a dysfunction. When push comes to shove, I am able to achieve a solid central coherence as well if not better than NTs. However, the way I piece things together is from the inside out rather than outside in.
So I do agree with your thoughts about the mistake people make with forming the big picture (expectation and projection) of what they think ought to be, and then struggling in vain to put the pieces together to form a cohesive satisfactory entity. I would suggest to these people who truly do care about their loved ones with ASD to try to erase preconceived ‘big picture’ ideals from their minds, and just pick up those pieces and put them together bit by bit, and they will be most pleasantly surprised at the beauty that will most definitely be revealed slowly but surely before their very eyes! Work from the inside out, not outside in. It’s about casting away stubborn and foolish preconceptions of what ‘should be’.
Sorry-I didn’t address the “puzzle” aspect, as my comment is already far too long & abstract:
Am sympathetic to both sides of the equation. Which way my response leans varies, depending on the info. I have about a given set of circumstances.
Specificity vs. Expedience.
Explicit precision, spelling everything out at length/in detail vs. Implicit ambiguity, shorthand/shortcuts.
Accuracy, complexity, & comprehensiveness vs. Rapidity, simplicity, & certainty (however rightly or wrongly, possessing a sense of “sureness”).
Quality vs. Quantity-in this case, the bias towards saying less (omitting “to me” or “IMHO”-or similar qualifier of statement) is a time-saver (considered good), but it excludes important caveats.
A shorter sentence (spending less time to write/read) appeals because it’s easier-yet doesn’t reveal itself as being merely a belief (rather than a definitive fact) about the correctness, or completeness of the sentiment/assertion/perception/conclusion.
Determining where along that continuum (between those) a particular communication (receptive or expressed message) falls is a constant struggle-for me (and to some degree, for most individuals…IMHO).
Do I write an email back (or make a comment to a blog) as soon as I can-or do I wait until I’ve thought it over for eons to make sure I’m saying everything I mean while not saying anything I don’t intend ?
I would comment & write & speak a lot more if I weren’t perpetually worrying about making a mistake, by not phrasing things “perfectly enough”-that’s a consequence of my overall caution as a person, after feeling embarrassed at countless social missteps I’ve made.
On one hand, it is important to stipulate that my words are based on what I think & feel, my experiences & interpretations as just one person. On other hand, if I have to put that long string of words around each & every single communication in which I participate/contribute, it becomes unwieldy & acts instead as a barrier, a hassle, too much bother (and I may end up remaining silent).
I agree with the idea of signaling “this is a subjective sentence”, rather than letting things float along with the patina/aura of “objectivity”-but the implementation of how to do it is not always so simple. It becomes a new burden that one has to tack on to any statement, and should one forget or neglect to include that disclaimer, one fears having hurt or offended one’s audience (readers or listeners), and causing oneself to be seen as an unkind/callous voice.
Deciding what to write & whether to post this comment is an example of & exercise in the tension & apprehension inherent in daring to communicate (esp. with an anonymous public-it’s the closest I get to “public speaking”), knowing the risks I run of putting things imperfectly & being misunderstood as a result. It took me hours of mental frustration to create & edit this, and I’m still not satisfied with it-but if I don’t post it soon, I won’t post it at all.
as i was reading the first paragraphs, i thought, “how ironic.” i’m a puzzle-lover of long-standing and am always so comforted when the pieces come into place and everything fits. mostly i love word and logic puzzles—they have their own coherency and structure.
when i approach the nt world, i often hope for the same immediate coherency—of course, this is unrealistic. what gets communicated by silent bells and ultrasonic whistles is simply beyond my hearing range, and so many of the needed pieces are missing. i often have the sense of trying to work a very confusing puzzle with everything scattered, many parts of it beyond my reach. sometimes i get frustrated too, as ben noted. mostly i get tired of trying to say what i need to say and often not being heard—or worse, targeted because i’m really fumbling.
and then i reached the paragraph that noted many people on the spectrum view this as a puzzle too. i’m not sure what my point is, really—but that seems fitting in some way, and sort of a comfort. it feels a little less lonely “up in here.”
Hi Rachel : ) Great idea here and could I please take part, you can take a photo of me from my dazzlius blog and use whatever colors you like, the more aspie pics of people the better.
fleure : )
What a fantastic post! I have a daughter with autism and a daughter with Down syndrome, and it has not been easy raising them. Your post made me realize that part of the issue is that we SO live in this world of “normal” and “everything else” that supports parents of so-called typical children, whereas parents of children with special needs have to, at times, struggle to get and find the resources and support we need.
The plus side is that it has brought me closer to my children, and open my eyes to my own prejudices. And maybe I was lucky, because I’ve never really thought of myself as “normal” … and wouldn’t want to. It’s by throwing out our preconceived notions of conformity and allowing ourselves and our children to embrace who they were meant to be.
I just read a post by someone who feels the same way as you, Rachel. She has been trying to come up with an alternative and I left a link to your post in the comments:
http://nostereotypeshere.blogspot.com/2010/08/puzzle-less-autism-awareness-ribbons.html
[...] of a ribbon with a puzzle design on it. For Autism Awareness month. Leaving aside for a moment the offensiveness of the puzzle logo, I wonder in what world a lapel pin is an appropriate toy for a [...]
[...] of a ribbon with a puzzle design on it. For Autism Awareness month. Leaving aside for a moment the offensiveness of the puzzle logo, I wonder in what world a lapel pin is an appropriate toy for a [...]
[...] 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 [...]