The Misleading Nature of the Deficit Model

by Rachel Cohen-Rottenberg

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.

About the Author: Rachel Cohen-Rottenberg is a wife, mother, writer, and artist. She was diagnosed with Asperger’s Syndrome at the age of 50. This piece first appeared on her blog, Journeys with Autism.

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2 thoughts on “The Misleading Nature of the Deficit Model

  1. Lisa DeSherlia says:

    THank you for this blog, Rachel. You are blessed that, even the days before your high-functioning autism was finally diagnosed, you never, as you say in this blog, have ever seen your challenges as “deficits.” THat no doubt has helped you very much. Unfortunately, I grew up seeing my challenges as deficits and still I cannot get an autism evaluation because I can’t find anyone who evaluates adults for autism. I was steered away from the helping professions I aspired to because I was seen as not liking people or having empathy. Even though I may always have to be self-diagnosed, I wish I knew what I know today So I could have stood up for myself and followed my heart despite what people told me. But I can’t change the past. I just thank God that my daughter, because of her correct diagnosis, has a much better chance at success and support from others.

  2. […] also The Misleading Nature of the Deficit Model, and pretty much all the rest of Rachel Cohen-Rottenberg’s Autism and Empathy […]

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