Have you seen this?
It’s a little dusty now, but it’s gotten much less press than I’d have expected – or hoped.
The Sally-Anne test has been in desperate need of an overhaul, or at the very least a broadly recognized critical rebuttal for years. While study after study, abundant literature, anecdotal evidence and first-person narratives have refuted its findings for years, the autism Zeitgeist is still based on its faulty and inherently biased (and faulty because they’re inherently biased) conclusions.
Bring up the word autism and you’ll hear a great many theories. Simon Baron-Cohen, the man who I believe has singlehandedly done more damage to the perception of autistics than any other human being (though there are arguably a number of people vying for that title), has a number of theories regarding autism.
His most famous is the “Theory of Mind,” based on the results from the now-famous “Sally-Anne“ test. The Sally-Anne test, where 61 children (20 autistic, 14 Down’s Syndrome and 27 neuro-typical) were shown two dolls, is an example of bad “science.” Sally has a basket in front of her, while Anne has a box. The Sally doll, presumably made to move by an adult, which further complicates the test, puts a marble into her basket and leaves the room. While she is gone, Anne takes the marble from Sally’s basket and places it in the box. When Sally returns, the child is asked, “Where will Sally look for the marble?” Only 20 percent of the autistic children were able to correctly answer the question — Sally will look in her basket.
From the test results Simon Baron-Cohen concluded “that the core problem in autism is the inability to think about other people or one’s own thoughts” according to the blog, holah.co.uk. Except that his test did not take into consideration the challenges many autistic children have in sequencing, language problems, misunderstandings of prepositions, the level of anxiety or stress levels of the autistic participants at the time of testing. Nor did it take into account literal thinking, something many autists have, all of which made the test and the questions asked that much more challenging.
Later in that post she says what is really the crux of this for me …
“Simon Baron-Cohen based his theory, which is taken by many as proven fact, on the assumption that the autistic participants understood the question.”
I would argue that not only have we, as a society (and researchers and doctors and evaluators as an extension thereof), been problematically posing the wrong questions, but that we have dramatically failed to look exhaustively for the answers when they’re presented differently from the way that we expected to find them. I know, that sentence was really awkward. Stay with me.
When my husband drives my car, he often forgets to take the keys out of his pocket and hang them on the key hook by the door. When looking at the empty key hook, I could conclude that he lost the keys, or threw out the keys, or that the keys never existed in the first place, because they are not in the place that I am looking. Or, I might just look somewhere else. Like his pocket.
You still with me?
When we use ‘standardized tests’ to evaluate intellect and examine capacity for perspective taking / empathy and those tests, based on our execution of them, lead us to empty key hooks, what do we do? For the most part, what we’ve collectively done so far has been to conclude that these qualities for which we were seeking evidence did not exist, when what was actually lacking was the evaluators’ ability to take the perspective of those whose neurology varied from the their own. And we all (parents, teachers and society at large) took these bogus conclusions at face value and agreed that the keys didn’t exist. In some cases they may not. But in many, they do.
Time and time again we hear and we see that the manifestation and expression of the human experience is different for those of divergent neurotypes than it is for neurotypicals. It is expressed, well, a-typically. But because we don’t recognize the expression as the same as those manifested in and expressed by our neurotype, we dangerously dismiss the possibility of its very existence.
Expressing an internal emotional response in a different way than one’s peers does not necessarily equate to feeling it differently internally. (That’s not to say that it isn’t experienced differently as well, but one’s outward expression of it is not enough to make that assumption.) Not expressing it at all, or at least not in a way that is recognizable to the majority, does not necessarily mean that it doesn’t exist.
The other day, an article called Autism: After 20 Years He Finds His Way Out of the Silence was making its way around the Internet. Various friends posted it to Facebook and tagged me in their posts. Among them, a fellow autism mom, a few family members and my friend Kate, a fabulous young woman with Asperger’s whom you may remember from HERE.
There was a lot of commentary swirling around the article, but it was Kate’s post that illuminated what, at least in part, had contributed to my lack of comfort with the way in which it had been written. By the time it reached a listserve of local autism parents, I felt compelled to respond. This is what I wrote:
Thank you for sharing the article. While I applaud the reminder to always presume competence, I’d like to share what an autistic friend just wrote in response to the following section of it:
“It goes back to the lack of motivation Ramsay mentioned. For some reason, people with autism don’t receive pleasure from interacting with others.”
This is what she said ..
“Can’t they see how wrong they are? People with autism do not receive pleasure from interacting with others USING THE SAME LANGUAGE THAT NEUROTYPICALS DO. While I can’t speak for anyone but myself and overall general knowledge I’ve acquired, the vast majority on the spectrum WANT to be included and have interactions with others IN THEIR OWN WAY, which requires the other person to do some learning and exploring to figure out what that way is.”
Kate’s words are the fundamental truth of this post. And its implications are huge.
My daughter tends to laugh when people close to her get hurt. If you didn’t know her, you might very well conclude from that isolated fact that she lacks empathy. In fact, you might even think her cold, callous, even cruel upon hearing that she laughs in the face of others’ pain.
But to know her well and to hear the laugh is to understand that it bears not even a remote similarity to the one that she emits when experiencing joy. Instead, it is a visceral pressure release valve. An automated response to far too much input because, contrary to what the old Sally-Anne test might have us believe, she FEELS others’ pain so intensely that she needs a way to process the emotional overload.
But if we don’t take the time to search for context, if we don’t dive beneath the surface to look at WHY her behavior is what it is, we can easily convince ourselves that she is deriving pleasure from someone else’s pain. This conclusion, drawn without context or depth of knowledge or broader understanding of how she experiences the world would be not only useless, but terribly destructive.
That, to my kid, is Sally-Anne. Or a neuropsych’s declaration that because she didn’t yet have the tools for successful social interaction, she must not crave it. Dangerous conclusions based on limited and overtly prejudiced observation.
I know that some will argue that for some autistics Baron Cohen’s findings ring true. I don’t doubt that they do, nor that many of the challenges that those particular people face can be illuminated by his study. So too, I know that there are autistics, just as there are NTs, who prefer solitude to the company of others. The spectrum is vast and varied. But these things simply do not describe nor reflect the experience of my child, nor so many like her for whom the Intense World Theory reads like a well-worn map. I’ll say again, autism is one word, but there is no one autism. Sweeping generalizations based on limited and rigidly imagined observation hurt people.
And they send us looking in the wrong place for the keys.
Huge thanks to Ariane for writing the fabulous post from which I so liberally quoted and to Kate, for allowing me to share her thoughts here. But most of all to my beloved Brooke – for teaching me to never, ever stop looking.