San Francisco Chronicle autism blogger Laura Shumaker today presents this quote from Dr. Susan Ashely's 2006 book The Asperger’s Answer Book: Professional Answers to 275 of the Top Questions Parents Ask as an authoritative, neutral statement on theory of mind:
Theory of Mind (ToM)is the ability to make attributions. Attributions are the thoughts we create about others in order to explain what happens in our interactions with and observations of them. No one actually teaches us to make attributions; we just do it automatically. For the most part, we can make good guesses at someone’s intentions. From these inferences, we determine how to react to them.
Children and teens with Asperger’s are deficient in ToM. They do not comprehend that others have thoughts and feelings that are different from their own. They cannot stand in someone else’s shoes.
What's wrong with that?
Laura presents one point of view on a controversial subject as fact. I recommend anyone seriously interested in theory of mind visit Rachel Cohen-Rottenberg's site Autism and Empathy and this essay she wrote on the topic:
Now, I will readily admit that I cannot infer a person’s mental state by reading nonverbal cues. And while I can reflect endlessly upon the mental processes of neuro-typical people, I find certain of their characteristics unfathomable. Why do people enjoy socializing? What do they get out of it? Why are most people put off by discussion about serious matters? I haven’t a clue.
But let’s turn the tables for a moment. Let’s look at how unfathomable autistic people seem to the vast majority of neuro-typical folk. For many decades, scientists had no ToM regarding the mental processes of an autistic person. Guess how they found out? An autistic person wrote about it. She put it into words. She had to, because your average human being could not infer the mental state of an autistic person by translating his or her nonverbal cues.
The Sally-Anne test which Simon Baron-Cohen uses to support his theory relies on complex verbal instructions which autistic people may not understand. When a similar test is presented through drawing, autistic children may do slightly better than other children.
Ashely's explanation is especially problematic because she uses exclusive language. Even if one embraces the theory of mind deficit as a core component of autism, it would be more accurate and professional to write this:
Children and teens with Asperger’s may be deficient in ToM. They may have trouble comprehending that others have thoughts and feelings that are different from their own. They may find it harder than their peers to stand in someone else’s shoes.
Autism is a spectrum. Having a child on one part of the spectrum does not mean that you are an expert on people on another part of the spectrum. If someone asks you questions about what things are like for people with Asperger's syndrome, it's not okay to use neurotypical experts and other neurotypical parents experts as your only source if you are answering for a major publication. If you're not willing to take the time to actually get some input from someone who has Asperger's syndrome, you should probably just not answer the question.
Rachel Cohen-Rottenberg starts with a Facebook graphic that says this:
See the person not the disability
Rewrites it into this:
See BOTH the person AND the disability. Because there is nothing dehumanizing or shameful about a disability.
And goes on to on an insightful discussion of the ableism embedded in person-first language:
My rewriting speaks to the heart of the problem with person-first language and its insistence on turns of phrase like “person with disabilities” rather than “disabled person.” Such language betrays the assumption that disability renders one less of a person. If that assumption were not present, there would be no reason to foreground the fact that we really, really, really are people, and that one has to put the disability aside in order to see how really, really, really human we are. Of course, that rather problematic logic begs the question: How exactly does one pretend not to see a disability once it has made itself known? In most contexts, that would be called denial and, occasionally, delusion.
Some reactions from the online autistic community to the murder of 4-year-old autistic Daniel Corby by his mother.
All attempts to explain this tragedy hide from view an essential fact about becoming a parent: In having a child, you make a commitment that, even if you end up in the worst extremity, you’ll protect the child’s life. That’s a basic, sacred trust. The child didn’t ask to be born, didn’t ask to be difficult, didn’t ask to be disabled. When people don’t speak to that commitment and that trust, but start talking about how difficult the child was, and how the parents lacked services, I get really scared. Because there will always be people without adequate support. And if people can’t simply say, “I don’t care how bad the parent’s life is. The parent broke a sacred trust with the child and had no right to do so,” I don’t see that there is any protection for disabled people at all. It’s very frightening to me. It means that I live in a society that is nothing short of barbaric.
When a four-year-old child is drowned by his mother, it’s not the time to wonder why she did it. It’s time to condemn that she did, and it’s time to look at how much we devalue disabled life that a mother thought her life would be better with her son dead.
Because the problem isn’t the lack of services. The problem is the devaluation.
Yet in the cases of disabled victims, the media does not speak up for the victim. Even when the killers have confessed or when it is obvious who the murderers were, the media pours sympathy onto the murderers. Articles about these cases emphasize how stressed the murderers were with the burden of having a disabled family member. They emphasize how difficult the victim was to live with and how the victim's deficits and challenging behaviors drove the murderer to the edge.In short, society blames the victim and exonerates the perpetrator.This is the same thing as blaming a woman for her rape because she wore a short skirt or had a low neckline on her shirt. It is the same thing as blaming a Sikh man for his assault because he wore a turban. It is the same thing. There is no difference.
You don’t know how hard it is to live with autism when your life may be in danger at any moment if a family member or someone decides to abuse or kill you. You don’t know how hard it is to die with autism. …….. and the matter is made worse by the news media tending to repeat the “it’s so hard to live with autism” or “the person was low-functioning,” or wore headphones. Wearing headphones or being afraid of dogs is not an excuse to kill a human being.
Rachel Cohen-Rottenberg at Journeys with Autism has written an extraordinary piece that does a better job than anything else I have ever read of expresing one of my most basic feelings about autism, as it affects both me and others. She writes that it is misleading to think of autism mainly in terms of deficits, the things we don't have, because it is the overabundance of feeling and sensation that defines us:
She continues to explain that what appears as rigidity to other people feels like excessive empathy from the inside:
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.
This is the best description of what my difficulties with conversation feel like that I have ever read. And yet. . .
I wish I could deny that part of my autism is deficits. My spatial reasoning is so poor I never really understood any math after Algebra I. I cannot find my way around without the support of a GPS, and even with one I get lost all the time.
And, worse, I really do have limited emotional and social capacities. I mentioned on Facebook that the Ingenious Minds episode on Temple Grandin made me sad, and part of the reason is watching how Dr. Grandin's extraordinary strengths still accompany genuine disabilites. I don't know if she felt lonely when she was trying to keep talking about her brain to scientists who were clearly eager to move on, but the image of her trailing them, talking about how she thinks while their minds were clearly on something else made me feel completely alone. And sort of hopeless.
Because most of my conversations feel a little like that. In part because of the investment in my ideas that Rachel descibes, I love them and know how dearly they are formed. And it makes me incredibly sad to love them all alone.
I am a limited person. Everyone is, but my autism gives me limitations that sometimes feel crippling. There are days, like today, when I genuinely feel I am less than the people around me. And when it is impossible for me to imagine a world that is not both exhaustingly social and depressingly lonely.
Gavin Bollard at Life With Aspergers offers a fascinating interview with Rachel Cohen-Rottenberg. She is the author of The Uncharted Path and has her own superb blog called Journeys With Autism. Their conversation is insightful, especially regarding labels: