Those who danced were thought to be quite insane by those who could not hear the music.
—Angela Monet
I’ve never been shy about my feelings concerning the deficit model of autism. I object to its focus on “impairments” and its dismissal of our gifts as “splinter skills.” I dislike the hierarchy of human value it implies and, every time it leads a parent to believe that his or her autistic child will never feel love, I want to cry.
Lately, though, I’ve come to feel that the deficit model isn’t simply prejudicial, but entirely misleading.
In my view, the language of deficit hides the intrinsic nature of autism. In my experience, autism is not a condition of deficit, but of overabundance. I’ve never viewed my difficulties as deficits, because I spend a great deal of my daily energy dealing with an experience that is laden with perception and feeling. I hear everything very clearly, with very little filtering. My eyes are constantly taking in the visual world: color, texture, pattern, and motion. I have a vivid emotional and visual memory, both for events that have just occurred, and for experiences long past. I feel other people’s emotions immediately upon meeting them, and it’s in my nature to see things from a multiplicity of points of view.
When I look at autistic people who have been deemed “low-functioning,” I see people whose sensitivities make me look absolutely wooden. Our presentation is very, very different and, obviously, I can do a great many conventional things that others cannot. But intuitively, I know that they are not dealing with perceptual deficits. I see people whose overabundance of feeling and perception is both fundamentally different from mine and altogether overwhelming to their ability to function in any kind of normative way.
It’s this relative lack of normative functioning that brings in the deficit model. And, in terms of helping people to qualify for services and obtain needed assistance, it’s not a bad model. After all, if you need a service, you need to be able to document why. The problem is that once the deficit model is in place, it becomes impossible for most people to see beyond it. If you start talking about your internal experience, you get dismissed, because what becomes important is how you appear and what you do, not who you are or what you feel.
And how you appear is generally what shows up on an assessment, because the questions are geared to the surface level, and not much else. So, for example, if one were to ask whether I hold tenaciously to my own feelings and ideas, it might appear that I have difficulty seeing multiple points of view. But part of the reason I am so tenacious is that I’ve gone through a process of looking at things from so many different points of view that I would drown in the sea of other people’s perceptions if I didn’t make a judgment as to where I stand and what I believe. In arriving at a conclusion, I work through an immense number of possibilities and, once I’ve gone through the process, I generally form a strong opinion. It doesn’t mean that my mind is closed; it means that I’m not going to be convinced out of an idea or a feeling simply for the sake of social form or expectation.
Apparently, because I hold firmly to my conclusions, I can appear to be unempathetic to those who do not think as I do. If people only knew how intuitively I bounce from one person’s perception to another, how intensely I feel other people’s feelings, and how much mental and emotional discipline it takes to parse experiences that aren’t even on most people’s radar, they would see that my way of thinking is anything but inflexible—or easy.
Fortunately for me, I can speak, write, and express my internal life to other people. Where would I be if I didn’t have words? Where would I be if I weren’t able to navigate the world in a language it understands? Then I’d just look like a walking deficit model. And people without the empathy to see what’s going on below the surface would call me unempathetic, incapable of seeing things from other points of view, and without feeling. And they would be very, very wrong.
In describing autism as an experience of abundance, I don’t want to minimize the difficulties of living a life of intense perception, especially for those who cannot function in conventional ways. What I want to do is to signal that far from lacking the basic essentials of humanity, we feel our humanity acutely, and we suffer when others choose not to honor it.
© 2011 by Rachel Cohen-Rottenberg
i have tried, with a little success, to articulate what you write about in the 5th and 6th paragraphs, our tendency to see multiple points of view. i think it might sound self-serving when i’ve explained that i come to my surety after weighing seemingly bewildering possibilities, and coming to a decision (usually fairly quickly, probably of necessity, to keep up with all the other stuff i’m trying to process in parallel). kind of like all the times i want to say, ‘i’m not really being rude’
i think you’ve nailed it, how regular people think i seem when i’m sure. no matter how many times i’ve said ‘i’m not sure’, ‘maybe’, ‘possibly’, most people only remember the times i was adamant. after all, i cannot say ‘yes’, or ‘i’m positive’ unless i am sure of my facts. that would be a lie, and i have trouble telling lies
my experience has been that most people don’t appreciate surety, and how difficult it is for me to get there. like you, once i’m sure, i probably appear intractable.
i doubt i’ll be able to remember your succinct explanation the next time i feel like i need to explain myself. maybe next time i won’t care, and won’t try
Ben, I think it’s the fact that sometimes the process goes so quickly that seems to catch people off-guard. I can appear to be very decisive but, as you say, it’s that I’m putting the process of parsing the possibilities into overdrive just to keep up with all the other processing I need to do—or with the emotional demands of the situation. Most of the time, though, it doesn’t go that quickly at all, but when I’ve finally examined all the possibilities for how to look at something, I’m pretty much drenched in them, and I have everything I need to make a decision.
um…yeah..what y’all said.
Only I think I’ll just send people the link to this post.
Go for it!
Rachel, this is a fabulous explanation and with your permission I’d like to send a copy to a couple of BB’s therapists (with a link, of course!)
Do you think it’s possible for some people to be both hyper-aware of other emotions, as you describe here, and under-aware of these same things at other times? I’m just picturing the disorientation that someone like BB might feel if there were times when he ‘sensed’ so much and other times ‘sensed’ so little, and couldn’t predict when or if the switch would come? I’m just guessing here.
This is a good question. I tend to be hyper-aware, so I’m not sure that I’ve ever experienced the disorientation of sensing too much in one situation, and too little in another. However, I do have a point at which I’m simply unable to parse anymore and get overwhelmed, at which point it can feel like I’m just numb and can’t take anymore in. The fact is that I’m not numb and that I’m continuing to absorb everything, but I just don’t have anything left with which to process it. It’s still coming in, but I can’t really do anything with it. The illusion of having gone numb is my system’s way of protecting me and getting me to move away from the situation.
Sometimes, the overload happens very quickly, as when I walk into a very noisy room (and that’s why I stay away from very noisy places). But when it happens slowly, it still catches me by surprise. It can feel very disorienting if I’m not paying attention to the fact that my sensory and emotional cup is full. Once I “get” that, I can go get some quiet space.
is it ok to tweet a link to this?
Of course! And feel free to give copies to BB’s therapists as well.
Thank you for writing this. I am still pondering it but I think you are expressing something incredibly profound and necessary for people to hear.
Thank you, AM.
This is a very interesting perspective. From an educator’s point of view, I have always interpreted the “deficits”, not from the actual “disability” but from how the disability makes it hard for the person to function comfortably in the environment. So, for those with sensory issues…which as you say usually involve an overabundance of stimulation…the deficit comes only in terms of the child’s inability to receive a proper education, say, in a regular classroom. If I take away the overstimulation by putting the child in a quieter environment, then the deficit could potentially be mitigated. Of course, this perspective doesn’t work for everything. My daughter has definite “deficits” that cannot be mitigated in any way, just dealt with.
Claire, I think that if you see a person’s difficulties in the context of the person’s sensory, physical, social, and emotional environment, then the model makes more sense, because everything becomes relative. A deficit isn’t absolute, but contextual. Some deficits are absolute, of course, but many are not.
The problem is that most typical people have weaknesses that come out with reference to a particular environment, but those weaknesses are not viewed as deficits at all. For instance, some people have to work in an office with a lot of social interaction in order to be productive, and they do very badly working at home; their inability to function well in a quiet, secluded environment is not seen as a deficit, however. In fact, the home office environment itself is considered to be deficient in terms of what seemes “natural,” i.e. lots of face-to-face interaction and office banter. And, as a corollary, my ability to function at a very high level in a quiet, secluded environment is not seen as a particular strength, even though I am a very capable person.
Thank you for writing this Rachel. You explain so well what I could never formulate into language. I have always been consistent in telling the therapists I have spoken with that my experience of Autism is not one that lacks feelings, or perception but is one of an overabundance of it. I notice peoples movements and moods down to the tiniest details (which sometimes gets me intro trouble socially because I can see the “stuff” that they don’t want others to notice). Because of this overabundance it is extremely hard to lump any two people together except for the fact that they are human… which in turn leaves a need to learn every single person I meet intensely before I can interact with them without feeling completely overwhelmed with information. A simple “feeling” other people get can tell them whether or not to trust someone but for me the factors to answering a question like that are endless… Never mind the fact that there isn’t actually an answer that leads to 100% certainty. The hardest part of Autism is explaining to others that I think in my own language (i.e. not spoken or written language), the language of feeling, of sound, of sight, of endless possibilities and infinite detail. I simply tell people I have a language processing delay which I guess in social terms I kind of do seeing as how I have to constantly my own language into english and other physical social meanings of the modern society I currently live in.
Thanks for your kind words, Jess. I hope that we can keep getting the word out about our internal experiences, because people so often misread us.
Hello! beautiful blog!
I followed Jess here, and I too am in awe of your amazing way with words.
Its funny, …this double sword of an Idea that Autistics both do not feel and feel too much at the same time. And yet, this paradox is the best way I have found to come to understand my own experience. I feel, understand, sense, grock, or experience so much, that If it becomes something that I wasnt “ready” for, aka, a loud sound, emotion, or strange experience, I cannot feel at all.
I’ve always just called it “burnout”. But to a Person who is constantly seeing the world in motion,I get I tend to get rather sea-sick when It stops. It takes me a while to get my land- leggs back, so to speak. I am intruiged by this post, and the Idea that others (particularly females) may have the same experience.
If so, I would love to hear more about them.
Corabelle, I’m so glad that you and Jess arrived here!
I also have that feeling of needing to get my “land-legs” back. I wouldn’t say that I stop feeling things. It’s more a sense of getting full and needing to withdraw in order to empty out and refresh myself. I go through regular cycles of re-simplifying, re-emptying, and getting back to basics after taking in a ton of emotional and sensory stuff.
Very thought-provoking post.
I have had the sense for a long time that both my diagnosed son and myself perceive too much and get overwhelmed by it, rather than not perceiving as much as others do. I also think that once we feel overwhelmed, or sometimes in order to protect ourselves from that, we have a tendency to shut out whole channels of incoming information just in order to function. But then we miss the information from those channels.
I think life would be much more difficult if we didn’t have the ability to block off some input so that we can handle processing something else. I don’t know if I’m explaining myself very well. I’ll use the example of when I was working at a bank and having to count out large cash transactions. If another person wanted to talk to me while I was doing that, I either had to stop counting completely or to block them out entirely – I couldn’t process their words and their frustration with my not listening, and all the sounds in the background and still be able to count or even to remember where I was in my counting. So someone could be right next to me very insistently demanding my attention and talking right in my ear, and I would have to finish my counting, because that was my job.
For me it’s mostly a conscious choice in order for me to be able to function, although not always. For my son it’s less less of a choice and more just something that happens to him, though he is making some progress with time. I can only try to imagine what life would be like with a constant stream of overwhelming input from all directions and no way to slow it down or shut it off.
Diane, I very much identify with the strategy of shutting down one channel in order to be able to concentrate on another. I always tell people, “One sense at a time, please.” Non-autistic people can filter input more readily, and so they can have all those channels going at once. They also miss a great deal, because less is coming in to begin with, but since most people are missing the same kinds of things, they don’t tend to get called out on it.
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I think you described the overabundance of autism very well. While Willy and Ben (my children who are more able to function effectively) have an overabundance, the first person I thought of when I read those words is Alex.
I often describe Alex as non-verbal, because he doesn’t have a functioning use of language. The more distress he experiences, the less able he is to talk. His default position in every day life is to be on overload. Words don’t come for him, or when they do they don’t make much sense. But then there are times when he’s either really, really calm and in a calm environment or not so calm, but in a calm environment with people he knows are willing to listen.
The words that come out then are meaningful, recognizable, but his pronunciation is unpracticed and can be difficult to understand. For example, at the dentist’s office (which is some place he’s not particularly calm, but it’s a calm environment full of people who are willing to listen), he says, “I don’t want that.” But it comes out, “ah-I dough wan tat,” usually spoken in a soft, breathy voice. It is meaningful and recognizable, but you have to be listening closely.
One of the reasons that I dislike the deficit model is because Alex shows me repeatedly that there are abilities that he has that he cannot regularly access through his sensory overload. I hear parents tell me all the things their children can’t do, and I cringe and I worry. How do you know what a child can’t do? You may know what a child hasn’t done or what a child can’t do on a regular, normal basis. But does that mean the child can’t do it? I’m not convinced it does; but I do know people can convince themselves of things that aren’t true and create unnecessary limits. If all you say, as a parent or a teacher or a service provider, is “He can’t do this, he can’t do that.” Then, not only are you going to believe it. The child or adult you’re talking about is likely to believe it, too.
Beautifully said, Stephanie. I agree with every word.
I, too, cringe and worry when I hear people talk about what their kids can’t do. The deficit model is static, and it ignores the fact that autistic people grow and change and learn like everyone else—and that we have plenty of internal experiences and capabilities that simply need the right environment to become apparent. The model can become a self-fulfilling prophecy, and that’s a terrible injustice to everyone concerned.
While I agree the concept fits, I was trying to stay away from “self-fulfilling prophesy” in order to express what I was thinking, because, at least from many of the things I’ve seen, it’s not so much a matter of self-fulfilling prophesy as other-fulfilling prophesy. As much empathy as I feel for the many parents who struggle to raise their autistic children, the limits aren’t being placed on the parents, teachers and therapists who create those limits in their minds; those limits are being placed on children and adults who are being disempowered and ill-equipped to defend themselves against it.
(I’m confident you recognize this difference, Rachel, but at the risk of stating the obvious I wanted to state it–since I’ve found what’s obvious to me isn’t always obvious to others.)
From my own experience as a child, I know how “disabling” honesty can be in a world that does not value it. When people said I’m stupid or ugly or whatever, I believed them. After all, why would they lie? It took decades before I really understood that some people would say things just to hurt someone else. I just didn’t have the “normal” defenses against statements like that (though, the more I learn about bullying, the more I question how adequate anyone’s defenses are against such an on-slaught). I imagine that willingness to believe simply because one expects the kind of truth from others that one seeks to provide is a problem for many people on the spectrum as well. While, for me it was my sense of self-worth that was damaged (which I’m not trying to belittle–that can be devestating all by itself), for others it is actual or potential abilities which are destroyed.
Oh, yes: “Other-fulfilling” is a much better word than “self-fulfilling” in this context, since it speaks much more clearly to the problem. (Of course, I meant that the prophecy itself is self-fulfilling, but I really like the way that your turn of phrase shines the proper light on the issue at hand.)
And I totally agree with you about the issue of destructive honesty. For a long time, I also took people at face value, wondering “Why would they lie?” only to figure out, hundreds of therapy bills later, that they were bullying me and taking out their pain on me. Nice to get it figured out, but I wish it hadn’t taken quite so long.