Journeys with Autism

When I first began writing this critique, I tried to take the EQ test, and I found myself so stymied by it that I gave up. As a person who arrives at the “big picture” by putting together all the details, I find it maddening to be asked to respond to statements that are completely out of context. How I am to respond to a statement like “I don’t tend to find social situations confusing”? My mind visualizes a great number of social situations, and questions like the following arise:

What social situations?
How many people are there?
Are they all talking at once, or one at a time?
Do I know them?
Do I feel safe with them?
Do they know that I need extra time to respond?
Is there ambient noise?
Are people only engaging in small talk, or does the gathering have a focus?
Are there mostly autistic people or non-autistic people there?
How far did I need to travel to get to the gathering?
How tired am I?
How long does the gathering go on?
How much clutter is there in the room?
How many moving visuals are involved?
Will I have an opportunity to take breaks?
Will other people understand my need to take breaks?
If I get tired of talking, will people communicate with me using my text-to-text device?

It’s impossible for me to take all of the possible variations of a social situation implied by these questions and average them out in order to arrive at an answer. If you have a misunderstood disability like autism that makes you acutely sensitive to your environment, that requires you to work incredibly hard at things that other people take for granted, and that necessitates a great deal of time to rest and recharge, there are a huge number of variables that go into whether you end up feeling confused in a social situation. But the statements on the EQ test take none of that for granted; they come from the perspective of the able-bodied majority. There is no absolutely no perspective taking across neurological lines. None at all.

Moreover, the possible answers one can give to any of these questions are quite vague. For example, where does “Strongly agree” end and “Slightly agree” begin? To my mind, there is a long continuum between the two, and most of the varied social contexts that come to mind when I read each of the statements would require an answer all along that continuum. If, by some miracle, I could take all the varied social contexts in which I’ve found myself and average them out to arrive at something representative of my experiences, chances are that my response would end up somewhere on the continuum between “Strongly agree” and “Slightly agree” (or between “Strongly disagree” and “Slightly disagree”), and I’d have no way to provide the proper answer.

Of course, the EQ test was not put together with a view to the ways in which autistic people see, process, and experience the world, nor does it consider failures on the part of the non-autistic majority to understand our feelings, perspectives, and experiences to be failures of cognitive and emotional empathy. And so, compared to our non-autistic counterparts, we tend to score rather poorly on the test, with potentially devastating results in the real world.

For an idea of these results, let’s look again at Karla McLaren’s question to Professor Baron-Cohen, in which she delineates the difference between her impression of autistic people after reading work based on his theories, and the impression she came away with after meeting autistic people in person:

I have a question about the hypothesis that people on the Autism Spectrum lack empathy. went into a job supporting college-aged Spectrum students, and I read everything I could get my hands on — most of which follows your hypothesis about low empathy and incomplete or missing theory of mind. From all these books, I thought I knew the kind of people I’d meet, but I didn’t see a lack of empathy — rather, I saw people who were often overwhelmed by incoming stimuli and who had a very hard time organizing and understanding emotional cues. I’ve since worked with many Spectrum people, and I really think the theory is leading the data-gathering.

Is it possible that people on the autism spectrum actually have a normal range of capacity for empathy, but are often overwhelmed and unable to organize incoming emotional and social stimuli?

What I saw was that labeling Autism Spectrum people as unempathic obscures deeper inquiry. Sadly, that label also helps people treat Spectrum folks as aliens. The lack of understanding I saw “neurotypicals” show for Spectrum people made me ask: “Just who is the unempathic person here?”

Now, let us consider Professor Baron-Cohen’s response in the light of his own definitions of empathy. He begins by saying:

Certainly, the idea of portraying or treating people on the autistic spectrum as if they were aliens is abhorrent.

I’m certainly glad to hear that he feels this way, but of course, his response fails to take into account Karla’s suggestion that his own work has been at least partially responsible for this state of affairs. He says that treating autistics like aliens is abhorrent, and yet, he wrote in his 2001 paper Theory of mind in normal development and autism:

A theory of mind remains one of the quintessential abilities that makes us human (Whiten, 1993). By theory of mind we mean being able to infer the full range of mental states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action. In brief, having a theory of mind is to be able to reflect on the contents of one’s own and other’s minds. Difficulty in understanding other minds is a core cognitive feature of autism spectrum conditions. The theory of mind difficulties seem to be universal among such individuals.” (Baron-Cohen, 3)

Is it any wonder that people who read words like these treat us like aliens? And is simply saying that such treatment is abhorrent an appropriate emotional response to being told that your work may be causing others to dehumanize autistic people? It rather misses the point, I think.

He goes on:

I also think your point that people on the autistic spectrum are ‘overwhelmed by incoming stimuli’ is very important, since the implication is that under the right conditions, people with autism would show no empathy difficulties at all, if the incoming stimuli were not overwhelming. On this view, any empathy difficulties might be secondary to difficulties due to the rate of information processing.

No, professor, not might. Replace the word might with are, and we might be getting somewhere. Using might betrays a spectacular failure of perspective taking. After all, what have so many autistics, parents, occupational therapists, and specialists been saying, so many times, in so many ways, for so many years? And why does Professor Baron-Cohen not have the cognitive empathy to understand that yes, definitely, difficulties in the rate of information processing — along with other factors, internal and external, having nothing to do with empathy at all — account for why we have difficulties with conventional expressions of empathy in real time? Could it be that, like us, he has difficulty understanding experiences different from his own?

And why, oh why, does this line of thought appear in a Q&A session in Google+, and not in his latest book The Science of Evil (known in the UK as Zero Degrees of Empathy), in which he insists that autistic people are on the zero end of the empathy scale? Given that the quality of life for so many millions of people is potentially at stake, wouldn’t a book on the subject of empathy be an “appropriate” place to speak to the issue in a nuanced way?

The professor continues:

I have some sympathy for this view, because I have met many adults with Asperger Syndrome who can cope with one-to-one relationships and are very caring within these, and only find it difficult when they have to process information in fast-changing social groups. Equally, I have met many adults with Asperger Syndrome who can display their excellent empathy when they have the “luxury” of considering all the facts “off-line”, that is, when there is less time pressure creating demands to respond in real time.

Anyone else notice the sleight-of-hand here? Karla asked about people on the spectrum — not just people with Asperger’s. Personally, I don’t find it an appropriate emotional response to turn the conversation toward a subgroup of a subgroup, when the question was about all autistic people, and when Karla was expressing her concerns about the dehumanization of all autistic people.

As for his comment that people with Asperger’s Syndrome can “display their excellent empathy when they have the ‘luxury’ of considering all the facts ‘off-line,’” using the word “luxury” here, even in quotes, is highly prejudicial. It implies that we are asking for some sort of special treatment when we need the time and the space to understand the intensity of our experiences. It’s not a luxury to process the facts off-line; because of the rush of sensory and emotional stimuli, it is a physical necessity. For the professor to call it a “luxury” is like calling a wheelchair a luxury for someone who can’t walk. It derives from an inability to put himself in the shoes of autistic people and understand the ways in which we experience the world

Professor Baron-Cohen concludes his answer with the following:

These ideas also suggest new lines of research that the autism research community could follow up.

We’re suffering out here, every day, from the lack-of-empathy trope, and his response is that perhaps, someday, the researchers need to follow up? From where I sit, that response is not emotionally appropriate. It’s not even close.

After all, we’re not just research subjects. We’re not just fascinating objects of study. We’re human beings who suffer from assaults on our humanity.

Certainly, we deserve a more empathetic response.

© 2011 by Rachel Cohen-Rottenberg