I’m delighted to see that autism is being portrayed in a positive light. Maybe more people will pay attention now that a team of neuroscientists is saying what autistic people have been describing for years. I’m totally supportive of what has been described as the “Intense World Theory” and wish to praise the Markrams for having the courage to advance this idea in the midst of skepticism and even scorn.
My interest in the Intense World Theory was piqued by a recent article by Maia Szalavitz, a science writer whose work I’m familiar with and have always found interesting, particularly when she writes about autism. She obviously writes from a deep understanding of the issues, in a clear expository fashion that is at the same time sympathetic, sensitive and understanding. She is a past master at seeking out and quoting experts on all sides of controversial items, such as this one.
All that said, I have found some of the language and statements in this piece to be objectionable. My criticisms of these things I wish to direct not to the author, because I know that there are editors involved, and also that she is often simply reporting on what authoritative people are telling her. Instead, my comments are directed to the world at large, so that my thoughts may be considered alongside what others have had to say on the matter.
I might as well start with my objection to the lede.
SOMETHING WAS WRONG with Kai Markram.
I sense the heavy hand of an editor here, honoring the sensationalism that journalism seems to ache for: “If it bleeds, it leads” is the expression. My problem with this statement is that the article is about autism, and even though most of the article is upbeat and positive, starting with this negative statement sets the tone, and is out of keeping with the entire piece.
George Lakoff has been preaching for years (in what I have seen him refer to as Linguistic Neuroscience) that the way we speak of issues evokes a whole “frame” of emotional content. To link “wrong” with “autism” in talking about a boy, for example, brings up images of dysfunctional children who are to be pitied. This is totally contrary to the message of the entire article, which is that autism is “different” and not “wrong.”
This, Markram and his wife, Kamila, argue, is what it’s like to be autistic.
The behavior that results is not due to cognitive deficits—the prevailing view in autism research circles today—but the opposite, they say. Rather than being oblivious, autistic people take in too much and learn too fast. While they may appear bereft of emotion, the Markrams insist they are actually overwhelmed not only by their own emotions, but by the emotions of others.
It’s unfortunate that “we” autistic people are spoken about as if we are not here. It would be nice to have autistic people describe what it’s like to be autistic. And it wouldn’t be hard to find such descriptions. As one example, I wrote about empathy earlier this year. And the autistic blogosphere is full of such references to how we experience the world.
The developmental disorder now believed to affect around 1 percent of the population is not characterized by lack of empathy, the Markrams claim.
Yes, that was one of the main points of my post, just referenced. So, bravo for that recognition. Autistic people have been saying that for a good number of years now. One might think that it shouldn’t take a debate among neuroscientists to recognize that. And, again, I, and many other autistics, object to the (common, if not nearly universal) use of the word “disorder” to describe autism. It is a developmental difference.
The 1% estimate is a conservative one, and is on the low end of the estimates I’ve seen lately. This year’s CDC number is “1 in 88″ children (and presumably adults) is in that range (about 1.1%), but a recent study in Korea put the number at 2.6%. The CDC also published the results this year of a self-reported parent survey that found a 1-in-50 rate (2%).
There is another important discussion, in my opinion, that goes beyond the inquiry into the prevalence of autism. Without going into detail here (I’ve commented on this before, and will do so again, I’m sure), let me just point out that there are many other conditions that are (to me, certainly, and to many scientists as well) vaguely similar to autism. I like to use the term “neuroexceptional” to refer to this group of similar profiles. People who are dyslexic, schizophrenic, bipolar, and so on are not exactly autistic (though perhaps someday all of these and more will be recognized as variations on a general class), but they are certainly not neurotypical either. My point is that the number of people who experience the world in a different and intense way may be something more like 10% (or even 15% or some other percentage) of the population.
AT FIRST, MARKRAM THOUGHT Kai had attention deficit/ hyperactivity disorder (ADHD)
Like I said. There are some who think that ADHD has been vastly overdiagnosed, but maybe it is autism that is under-identified. Speaking of autism, the article goes on to say:
… while experts now agree that the condition is neurological, its causes remain unknown.
The most prominent theory suggests that autism results from problems with the brain’s social regions, which results in a deficit of empathy. This “theory of mind” concept was developed by Uta Frith, Alan Leslie, and Simon Baron-Cohen in the 1980s. They found that autistic children are late to develop the ability to distinguish between what they know themselves and what others know—something that other children learn early on.
Here we have further usage of the “medical model” terminology; autism is a disorder that is “caused” by some unknown defect. In my view (and I am not alone here), autism is simply a different way of being in the world. So far as I know, the neuroscience community is not looking for the “cause” of left-handedness, yet being left-handed is a disability for those who have to figure out how to get by in a world that was mostly created by and for right-handed people. Leonardo da Vinci is one of the most famous left-handers (though he may not have been one congenitally) who developed his “mirror writing” (it is thought) to avoid smudging the ink as he wrote.
The quotation just given mentions a couple of the myths that have grown up around autism,  the imagined deficit of empathy and  the so-called “theory of mind” concept. While these may be two aspects of the same put-down, I like to distinguish between empathy, with its highly emotional content, and perspective-taking, which has more of a cognitive element.
Add to those two myths  the idea that autistic people are not adept at central cohesion and  that autism may be characterized by a dysfunctional mirror neuron system, and you have a nice catalog of some of the silliest things that have been said about autism. Or, they would be silly if they didn’t cause so much harm by introducing and reinforcing stigma, disrespect, and misunderstanding.
As to  empathy, I’ve already referenced a post of mine that disagrees with the deficit notion. It is said in the quote just given that  “autistic children are late to develop,” but delayed development is not the same as arrested development. Professor Nancy Kanwisher’s lab at MIT has done some very creative research documenting no difference in performance on tasks by autistic and non-autistic children when adjusted for age (autistic kids need a bit longer to develop proficiency). And, autistic subjects are able to perform identically on tasks relevant to  central cohesion under certain conditions. I can’t supply citations because as far as I know the work hasn’t yet been published, but I’ve seen presentations on it and read preliminary copies of the papers. Look for that to appear soon.
I’ve also written about  mirror neurons and my understanding of why they might appear impaired. Long before I had heard of the Intense World Theory, I wrote “…mirror neuron functioning might be impaired much in the same way many other brain functions are hindered. Sensory overload.”
There is much more in the article; it’s pretty dense with topics like the ones I’ve just commented on. I highly recommend it, and plan to study related documents and have more to say later on. I’ve touched briefly on some of the things that appear in the second half of the article, and if I were to drone on here I would begin repeating myself.
This is a healthy discussion to have, and I look forward to more engagement between the autistic community and the neuroscience community.