by Liz Becker
I know you’ve heard of it – Theory of Mind. You probably looked it up to see what it meant, came across the term “mindblindness,” and found it used as a way to explain autism. So many professionals use this in a detrimental formal way to characterize individuals on the spectrum. It suggests, whether intended or not, that autistic individuals are incomplete in their humanness. Let me ask you this: Do you agree?
Theory of Mind – the ability to relate to another’s thoughts and emotions. A very fancy way of declaring empathy as it relates to social communication. Can you place yourself in another person’s shoes to understand why he or she acts in a certain way? Do you feel the person’s pain? Take a look around you. How many neurotypical people do you know who could care less about the unemployed, the homeless, the sick, or the elderly? Neurotypical people are not always empathetic or our society would be a much better place. And yet, when discussing Theory of Mind, neurotypical individuals are assumed to possess such a depth of empathy as to declare it part of our humanness. As such, suggesting that autistic people do not have Theory of Mind is, in essence, stating in a subtle way that having autism makes one somehow less than human. Researchers conclude a seeming lack of ability to empathize as a result of data obtained from the infamous Sally-Anne test.
If you scan the research, you will find many references to the Sally-Anne test. Sometimes, this test is given as a set of pictures, and sometimes it is shown as a video. Here’s the situation presented to the child being tested:
Sally and Anne are in a room with a box and a basket on a table. Sally is shown putting her marble in the box and then leaves the room. Anne, having seen Sally put the marble in the box, walks over, retrieves the marble out of the box and hides it in the basket. Then, Sally returns. She wants her marble. Where will she go to retrieve her marble? To the box or to the basket?
Seems fairly simple, but then in autism, nothing is that simple. In asking the child “Where will Sally look?” they are asking the child to empathize with Sally – put himself or herself in Sally’s shoes. But in autism, some things are just not that black and white. We have to ask ourselves, “What is the priority of the child being tested?” The child, if he or she is anything like my son Matt, is always concerned about being right. As a young child, Matt had to get an “A” in every class. A simple “B” caused terrible pain and meltdowns. He just couldn’t think of himself as being less then anyone else. A “B” made him feel . . . imperfect. He still has this type of thinking, over 20 years later, and he still strives to do his absolute best. Yet underneath it all still lies a fear of failure, a possibility of imperfection. Now take this into account when evaluating a Sally-Anne test.
It’s a test and as such, he would want to be correct. He knows where the marble is and he knows that Sally does not know where it is. He is being asked to choose between saying Sally will look in the box – where he knows the marble is not (Sally would be wrong) – and saying she should look in the basket – where he knows it to be (Sally would be right). Since they are asking him to be Sally, and he would not want to be wrong, he will choose the basket. Basically, he is confronted with a dilemma: either pick where the marble is not (box) or where the marble is (basket). This has nothing to do with an inability to empathize and everything to do with self worth. If the child is empathizing with Sally, the child doesn’t want her to be wrong, because it’s an awful feeling to be wrong. The child just wants her to find her marble so she won’t be upset.
When a child states through whatever form of communication he or she prefers – whether it’s verbally or in gesture – that the marble is in the basket, the researchers assume this child could not put himself or herself in Sally’s shoes and, by deduction, must lack a Theory of Mind. The researchers missed an important component to this type of test: They forgot to put themselves in the shoes of the individual they were testing. So I have to ask, just whose mind are we really talking about here with regard to lacking empathy?
I see this as a perfect example of how autism myths arise and are then justified to society – with the end result portraying being autistic as somehow being less human. Isn’t it interesting that only neurotypical people declare autism as somehow less than human? Shouldn’t we ask autistic people what it is like and whether they feel empathy? There are plenty to ask. But instead, society as a whole ignores the plethora of information available from actual autistic people, preferring to listen to people who apparently have trouble communicating with actual autistic adults. Does this even make sense to one person? In articles written by autistic people, they are quick to say that they would not choose to be “cured” of their autism “disorder” because to them, their autism is an integral part of who they are. And yes, they do have empathy. But it shouldn’t matter anyway because all they really want is to be viewed as just as important to society as everybody else.
So why must we have a view of autism that constantly focuses only on ways in which to fix it instead of also including ways in which to promote cooperative communication? Shouldn’t neurotypicals (such as myself) be as willing to learn the various forms of communication an autistic individual (such as my son) chooses to use at least as much as the autistic individual is required to learn to communicate in the ways in which we choose? And, if communication really were a two-way street between neurotypicals and autistics, then wouldn’t researchers be aware of the empathy present in the autistic without such meaningless tests as the Sally-Anne?
It is my own personal opinion that for someone to state that an autistic person “lacks empathy” is to declare ignorance of the reality of autism. If you are a neurotypical parent of an autistic child, think about how you would characterize autism, in your own words, based upon the 24/7 interaction and experience you have with an individual on the spectrum. After taking into account all that you know – and remember, YOU are the expert on your autistic child – then how would you respond to someone declaring (in scientific journals, no less) that your child has no Theory of Mind?
My response to these researchers and professionals would be “Have you people no Theory of Mind yourselves?” After all, if they are unable to put themselves in the shoes of an autistic person, then they themselves lack theory of mind. If they cannot explain a situation involving an autistic person, then they must be suffering from mindblindness. And if they cannot see that these children are overwhelmed by sensory issues, communication differences, and fear of failure, and that they are bombarded by social cues being forced upon them, then perhaps the researchers and professionals lack real empathy.
So I ask you: Just whose mind is really deficient in the ability to put themselves in another person’s shoes?
About the Author: Liz Becker is a mother to four grown children, including her youngest son Matt, who was diagnosed as moderately to severely autistic at age 2 1/2. Doctors advised Liz and her husband to “put Matt in a home” out of fear that Matt would be too much of a burden on her and her family. They did not. Instead, they took him back home, where he progressed in tiny steps every year. Now 25, Matt is a well-educated, talented young man who shows just how wrong the medical community was.
This article first appeared on Liz’s blog, The World According to Matt, and is reprinted here by permission.