The Misleading Nature of the Deficit Model
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 file 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. Of course, some people are so invested in the deficit model that they dismiss me immediately because a) I am autistic, and therefore incapable, in their eyes, of describing my own experience, or b) I am capable of describing my own experience, and therefore, I cannot be autistic.
But more and more, I’m finding, people listen, because I speak in a language they can understand.
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.
Rachel Cohen-Rottenberg blogs at Journeys with Autism.
The Misleading Nature of the Deficit Model appears here according to the terms of this Creative Commons license.
Rachel’s memoir is The Uncharted Path.
[image by Rachel Cohen-Rottenberg]
Rachel Cohen-Rottenberg on 03/4/11 in featured, Society | 2 Comments | Read More
Comments (2)
Well said Rachel! “Different” usually seems to mean “scary”, “not as good as”, but how unfortunate people can’t get over “different” as being something “GOOD”, something to celebrate, something to find joy in, a Gift, a true GIFT!
Autism is different, and it is scary, because there is sooo much that is misunderstood, and unknown. But is it “too different” , is it “too scary”, is it so misunderstood that the general populace has determine people with Autism are, or should be consider sub-human, not worthy, a detriment, a deficit? NO! Not once people get beyond the misconceptions, and the scariness, and yes, the prejudice of being different.
Hypersensitivities, which overload young children, who do not know how to cope with everything that bombards them, and lash out, or withdraw or both, the world is a very scary place. For parents who do not understand why their child cannot cope with normal everyday wonders, it is scary. But is it also ONLY different! Not good different, not bad different – only – different.
I’m willing to bet that there are some people who would love to have some of the hypersensitivities, as adults, who fully understand these sensitivities and who could corral them into something like a “superpower”, like a Super Hero. Then maybe it wouldn’t be so scary – but perhaps it still would, as the X-Men comics have portrayed. And then there are also the Super Villains as well, huh?
My grandson, who cannot speak as a normal 11 year old – could spell, with his wooden blocks at age of 3! The first word he spelled was “video”. Not too many 3 years I know, or knew, could spell video! But Alex did. Alex could spell out many different words with his wooden blocks, but he was not credited with doing so – only mimicking words he saw on a regular basis. Words he recognized from the videos he watches. Being “hyper-visual”, the favorite part of the video for Alex was watching the credits scroll – seeing all those words he could not say, but could spell out in wooden blocks.
Dr’s, therapists, teachers, and the like, would not give him credit where credit was due, and diminished his abilities, his gift – his “superpowers”. It was “too different” to comprehend that he might actually be able to spell, not just mimic. His school teacher did get him 4 sets of wooden blocks, so he could spell more words, and he did – but not “on command”, and only words he was familiar with, nothing “really useful in actual communication”. How unfortunate for Alex, to be so easily stripped of his misunderstood “superpower”, because the adults in charge couldn’t see the usefulness of his ability!
Keep talking Rachel – hopefully somebody will listen!
I just recently heard the term “deficit model.” After I did research, I really got upset. Students in impoverished areas have problems that are a multiple of students in more economically advantaged areas. I realize that there are teachers in inner city schools that have low expectations but NOT ALL OF THEM. I naively changed my profession because I wanted to mentor students in inner city schools. The Deficit Model assumes that there are parents in the home and the only problem is the low expectatons of teachers. My personal experience as an African American who grew up during the Civil Rights Movement is the basis for my comments. Black people knew the importance of getting an education. My father, who had an 8th grade education and worked 16 hours a day, always told us to get a good education. After my father passed away, our family spiraled done. I have two sisters with a crack addiction. The son of one of those sisters came to live with me when he was in the 9th grade. Prior to that he visited in the summer. During one visit, I enrolled him in summer school to make up a grade he had failed. After he came to live with me he graduated #5 in his class and went to Georgetown on a full scholarship. He is now in law school. Over time my nephew told me of drugs being cooked in the house, not being able to student because the electricity was off, wearing shorts to school in the winter because he had no clothes, etc. I have many students that go from one foster home to another. Many of them have parents in prison, on drugs, or dead. I’ve had to make reports of serious abuse to child protective service agencies. Anyone that denies the real challenges of students in these situations is cold and heartless. I have high expectations and a listening ear when they need it. When I can I direct them to available resources.